It’s So Personal

Perhaps the best posts of 2009 were penned by readers, and the most illuminating, gripping and emotional posts were related to late-term abortion, in the wake of the assassination of the abortion doctor George Tiller. I’ve never seen the power of this medium so clearly and up-close: one personal account caused a stream of others. How could old-school reporting have found all these women? How could any third-person account compete with the rawness and honesty and pain of these testimonials?

It was a revelation to me about what this medium could do. Like the Iranian revolution that broke out soon after this thread, it made 2009 a very special year for this blog. – Andrew

(To skip to latest few posts in this thread, from Jul/Aug 2013, click here.)

May 31, 2009 @ 11:42pm

It’s So Personal

A reader writes:

The murder of George Tiller reminds me of something about abortion that none of the advocates on either side get — it’s intensely personal. My brother and his wife’s first child, a  girl, was diagnosed with hypoplastic left ventrical with an atrial complication. Look up the statistics, they are grim. They found the diagnosis at 18 weeks during the initial sonogram, almost at the cutoff point where most doctors not working in Kansas will perform abortions. (The nurse doing the sonogram blanched when she saw the abnormality, panicked and immediately called the doctor in to look.) So imagine the scenario. My brother and his wife have almost no information about the disease their firstborn child has other than the terrible mortality rates and the thought of having to bring a baby to term that will need three heart surgeries before her sixth birthday, each one of which could kill her. Or the baby could die in the womb. What do they do? The choice is unimaginable, and they have only a few weeks to decide. Only Kansas will allow doctors to abort fetuses after 20 weeks.

I guess my point is this… my brother and his wife chose to bring their daughter to term, though she died three days after being born, never being able to come off the heart-and-lung machine after her first surgery. But they considered having the abortion.

And if they took longer than two weeks to decide, George Tiller may have been the one performing the procedure. It’s easy to take sides on abortion in the abstract because we only think of healthy babies. It’s much harder when the decision is sitting in your living room in the form of a fetus with an 80+ percent fatal heart defect. Would George Tiller have been a monster if he aborted my niece? Or would he have saved my brother and his wife sixteen weeks of agony and the searing torture of handing their three-day-old child to doctors for open-heart surgery, knowing there was an 80% chance that was the last time they would see her alive?

I’m not making Tiller out to be a saint — he’s not. I’m just saying that he was engaged in a legal, and sometimes helpful, practice and was murdered for it. There should be no rejoicing in his death.

Jun 1, 2009 @ 10:28am

It’s So Personal, Ctd

Another reader on the reality of abortion:

We were told that the ultrasound suggested strongly that our second child would be born, if she made it that far, foetus-insetwith a Trisomy 18 birth defect. There were cysts on her fetal brain that were indicative. Her death before birth or just after was highly likely. If she survived against the odds, it was almost certain that she would suffer from severe birth defects and profound developmental delays. Her short life would be taken up with corrective surgery and pain, none of which she would be able to understand but which she would suffer. The amniocentesis would let us know for sure.

There was that time while we waited when we had to decide what we would do if the news was bad. While my wife and I believe in a right to choose, we strongly feel that life is always the first choice if possible. Even so, we could not allow our daughter to undergo this. We would terminate our pregnancy and spare her. The news came back good and Meg is 16, wonderful and on her way to a career as an artist. It’s not the decision that matters; it’s why it’s made. It’s parents struggling through terrible choices. And their only hope and help is with the doctors. We are all struggling badly to find our way. Perhaps this is the fairest way to understand Dr. Tiller.

An earlier reader testimonial here. Illustration: Leonardo da Vinci.

Jun 1, 2009 @ 11:40am

It’s So Personal, Ctd: The Catholic Mother

testimonial from a Catholic family who sought out a late-term abortion from this site:

At 17 weeks gestation our baby had been diagnosed with major heart defects requiring a minimum of three risky open-heart surgeries beginning at birth, and would later require a heart transplant. At 19 weeks we were finally given our amnio results which revealed our baby also had Trisomy 21.

A surgeon at the major teaching hospital where we’d had our fetal echocardiogram informed us that even if our baby somehow survived his palliative surgeries, this latest diagnosis meant he would not ever be eligible for a heart transplant. As we sat talking quietly in our living room, our priest shared with us that he’d spent time at the same hospital where we’d had our fetal echocardiogram and where our son would have had surgery.

He was there to support the family of a three-month-old who was having heart surgery. In the three weeks or so that he tended to this family, he also met 10 other families in the waiting room, each of whom also had young babies undergoing heart surgery. Sadly, within the short space of time our priest was there, every single one of those babies died.

Our priest came away from that experience feeling that this world-renowned children’s hospital was basically experimenting on babies. He saw their futile suffering and likened it to being crucified. The family he had gone there to support later told him that if they had only known what their baby would be forced to go through before dying, they would never have chosen surgery. Our priest told us that he believed we were not choosing our son’s death, only choosing the timing of his death in order to spare him a great deal of suffering. Something he said that brought us great comfort was “God knows what is in your hearts.” God knows our choice was based on mercy and compassion. Who would better understand our hearts than God, who made the choice for His own Son to die?

Jun 1, 2009 @ 12:27pm

It’s So Personal, Ctd: The Trauma

A reader writes:

My brother and his wife received a diagnosis at the beginning of the second trimester’s  ultrasound that their child had anencephaly – a condition where the fetus’ skull does not completely close and the brain forms partially outside the skull.  It is a neural tube defect, similar to spina bifida, but it happens higher up on the body. They were told the child would die before, or shortly after, birth. There was no doubt about the diagnosis. My brother and his wife were encouraged by their doctor to go to Kansas for an abortion, the closest place where they could obtain one in the second trimester.

It was an agonizing decision, but they chose not to have the abortion for religious reasons.  The pregnancy went to term and the baby lived for several weeks.  She was surrounded by love for the brief time she was here.

I wish I could say unequivocally that they made the right decision, but the long-term effects on my sister-in-law’s mental well-being have been serious. She is very much changed from the person that she was before.

Imagine what it is like to walk around in your third trimester, obviously pregnant, while well-meaning people ask you about this baby that you don’t expect to be taking home from the hospital. Innocuous comments become incredibly hurtful in this context. Then imagine the baby survives and days later you take home this child who will die. In case you might relax and pretend for a little while that everything is okay, a hospice nurse comes to your house every couple of days and reminds you the signs and symptoms of death. Every time you open the refrigerator you see the narcotics you’ve been given to ease the baby’s suffering once things get really bad.

Eventually, this baby dies a grueling death in your arms and you go home to an empty house.  You want another baby, but are paralyzed by the thought of having another child with the same condition, yet you desperately want a child that is related to the child you lost. You find yourself unable to conceive and resentful of those who have many healthy children so easily. The infertility takes its toll on your marriage. The suffering and injustice takes its toll on your faith.

I often wonder what would have happened if they had the abortion. I’m not sure my sister-in-law could have lived with that decision, but at least she was given the gift of making a deliberate choice and this did make a difference in how my brother and his wife perceived their circumstances. How do people respond when they feel trapped?

I agree with those who believe abortion is a selfish choice, but in some cases the cost to the self is too high and the benefit to the other is too hard to determine. I’m afraid that the murder of Dr. Tiller will hasten the decline in doctors willing to do this work and deny desperate people of options.

Jun 1, 2009 @ 1:35pm:

It’s So Personal, Ctd: A Doctor’s View

A reader writes:

Dr. Tiller’s death – as any murder – is a great tragedy and subtracts something irrevocably from the human race. I don’t want to dim the burning importance of this terrible event. But I feel I must make one important point. I disagree with late-term abortions in general, but late-term abortions for congenital cardiac defects are inexcusable. As a physician who specializes in taking care of children with these problems, I can categorically say that their care has improved immeasurably in the last decade.

A number of commenters have specifically singled out hypoplastic left heart syndrome (HLHS). While it is true that, as late as 15 years ago, the two options for HLHS were heart transplant or what was referred to as “compassionate care”, in the hands of a skilled surgeon and a modern cardiac intensive care unit, children with HLHS have a better than 50% chance of surviving through all three surgeries.

Yes, the surgeries are long and difficult, and the recovery periods are longer. This field is some of the most technical and demanding in all of children’s health care. But 100% of fetuses on the receiving end of an abortion die. It is indisputably a sad and disheartening thing that people in this country ever feel compelled to resort to abortion after the age of viability. But it is even sadder when that decision is made on the basis of bad information.

Jun 3, 2009 @ 8:11am:

A reader writes:

I agree with the doctor’s point about heart disease being not a good argument for allowing late term abortions. I believe they should be severely restricted, and heart disease should not be one of the reasons to allow it.

However, what if the parents don’t have the health insurance to cover this surgery? It’s not an argument to allow abortion, mind you, but it is a real concern for parents of a newborn that will have to have long and difficult surgery that is “some of the most technical and demanding in all of children’s health care.” It’s easy to say that every child should be born, but the practical implications of it for many parents in our society are making it unnecessarily hard for some to fully embrace that motto, even if they want to (and I’d bet that most DO want to).

Another writes:

That post could have only been written by “a physician who specializes in taking care of children with these problems.”  What about the emotional toll of parents and siblings, not to mention the stratospheric cost of three uninsured surgeries? Which parent quits a job to care for the sick child? Who takes care of the other children while the parents commute the baby back and forth to potentially distant specialty care? It all presumes a family or social support network that  all too often doesn’t exist.

All for a 50% chance that the baby will live (and nothing said about such a person’s long-term prospects, for good health or for being able to obtain health insurance). That’s a high-wire act made for a neonatal cardiologist, but not for mere mortals. I would actually argue that a pregnant couple facing a diagnosis like this might be more inclined to terminate exactly because of the medical interventions that might be forced upon their baby. Doctors like this one are not likely to take “No” for an answer, and parents would face enormous pressure against letting nature take its course.


Physicians like that are extremely disturbing – in particular those whose careers stand to benefit if more children with cardiac defects are delivered regardless of long-term health outcomes or emotional suffering.  Their involvement conveniently ends, but it’s the parents and children themselves that continue to deal with decision. Yes, it’s the parents of these children who chose to carry the pregnancy to term that have helped the field advance and for pediatric interventions to develop, but let’s not begrudge the parents who choose otherwise. There’s a great deal more to life than “viability” alone.


The intellectual arguments are often quite logical. It’s the practical reality that breaks one’s heart – and that’s where the parents should be supported for the decisions that they make, for their situation. Their God, their doctor, their family, and their finances. Not mine, not yours, and not every other person who thinks they know what’s good for them but don’t have to walk in their shoes.

Jun 1, 2009 @ 2.24pm:

It’s So Personal: A Tiller Patient

Metafilter commenter writes:

My wife and I spent a week in Dr. Tiller’s care after we learned our 21 week fetus had a foetus-insetsevere defect incompatible with life. The laws in our state prevented us from ending the pregnancy there, and Dr. Tiller was one of maybe three choices in the whole nation at that gestational age. My wife just called with the news of his murder, weeping. I can’t really come up with some profound political statement just now, so let me just list some memories of Dr. Tiller.

I remember him firmly stating that he regarded the abortion debate in the US to be about the control of women’s sexuality and reproduction.

I remember he spent over six hours in one-on-one care with my wife when there was concern she had an infection. We’re talking about a physician here. Six hours.

He told the story of his previous shooting, where a woman shot him twice in both arms as he drove out of his clinic. At first he wanted to run her down with his Jeep, but then he thought “she shot you already George, she’ll do it again!”

I remember being puzzled about a T-shirt he was wearing, which said “Happy Birthday Jennifer from team Tiller!” or something similar. Turns out it comemmorated the birthday of a fifteen year old girl who was raped, became pregnant, and came to Tiller for an abortion. As luck would have it, she was in the clinic the same week as her birthday. So the clinic threw her a party.

The walls of the clinic reception and waiting room are literally covered with letters from patients thanking him. Some were heartbreaking – obviously young and/or poorly educated people thanking Dr. Tiller for being there when they had no other options, explaining their family, church etc. had abandoned them.

I remember my wife, foggy with sedation after the final procedure, being helped from the exam table. He had her sit up and put her arms around his neck, and then he lifted her into a wheelchair. “You give good hugs” she whispered. He paused just for a moment. “You’re just fine,” he told her.

Jun 1, 2009 @ 3:15pm

It’s So Personal: A Target Of Terror

A reader writes:

I remember sitting in my bible study shortly after the Sept 11 attacks.  The women were discussing the horrible things Islamic terrorists do in the name of their God and their religion.  I was too private to let them know my experiences.

I ran three Plan Parenthood Clinics in the early 90s.  I worked for Planned Parenthood when Dr Gunn was murdered in Pensacola.

I had been followed home from work.  I had my car vandalized with pictures of aborted fetuses.  My nurses had to receive police escorts to their cars in our parking lots.  My office had rocks thrown through it.  The clinic had to be searched by bomb sniffing dogs one night after being broken into.  I received threats in the mail on a regular basis. My parents were always afraid I would be shot at going to work.

All this in the name of a Christian God and a Christian religion.  It was religious terrorism.  And it was US Citizen on US Citizen happening right here in our suburbs.

Jun 1, 2009 @ 6.51pm

It’s So Personal: The Regret

A reader writes:

My wife and I are/were staunch choice advocates; we’d both done our share of marching on Washington for the cause. Actually enduring the process gave us a much more nuanced opinion about abortion.

For us, it was Trisomy 21 — Down Syndrome. The test came after my wife awoke one night in a pool of blood screaming and thinking she’d suffered a miscarriage. After she ran to the toilet, it fell upon me to call her doctor and then scoop out the remains–that actually turned out to be huge clots–and take them to the doctor the next day. The geneticist said that because of all the bleeding and other complications there was almost no chance the fetus would make it to 20 weeks let alone full term.

My wife says one of my finest moments as her husband came when I somehow made her laugh while she awaited the abortion. My wife doesn’t talk about her feelings of the abortion and the “failed” pregnancy. But we’ve been together for more than a decade and I know she will always be crushed by it. I know we made the right decision for us but it still hurts badly. This was the son we would never have.

Jun 2, 2009 @ 12:05pm

It’s So Personal: When Principle Meets Reality

A reader writes:

 About a year ago, my cousin went into have an abdominal hernia fixed.  She was born with kidney problems that required multiple abdomen surgeries, which led to scarring and fibrous growths on her uterus that resulted in three complicated pregnancies. Just hours before she was scheduled for the operating room, the surgeon realized he had not conducted a pregnancy test. Despite using birth control, my cousin had somehow gotten pregnant. Considering her history and condition, the surgeon did not believe it was wise to bring the child to term. He believed she would probably miscarry without at least six months of bed rest, and that she would risk not only her health but possibly her life. She got a second opinion from another doctor who believed that he could safely help her bring the child to term, though it would be a very complicated pregnancy.

My Catholic, Republican, generally “pro-life” sister and mother related this to me at the time. My cousin had not yet decided what she would do, but my sister was certain: if she were my cousin, with three children under five years old who needed a mother to raise them (and a father who traveled often and for long periods for work), she would have terminated the pregnancy. I, on the other hand – a gay liberal pro-choice Democratic male – sensed I wouldn’t have been able to go through with an abortion. I would have felt devastated thinking about having ended the possible life of my own child.

It turned out my cousin felt the same way. My aunt and uncle flew from New Jersey to Seattle and took care of their three grandchildren while my cousin remained in bed. She gave birth to another beautiful girl. Having learned to temper my tendency to engage in political arguments with my Republican family, I never revisited with my sister what she said she would have done in that situation. Nevertheless, I doubt she would ever admit that despite her professed pro-life Catholicism, she actually believes in the right to an abortion.

Jun 2, 2009 @ 2.47pm

It’s So Personal: Serial Abortions

A reader writes:

Twenty-seven years ago I went to the ER after having suffered my fourth miscarriage.   After genetic screening, my husband had previously been diagnosed with a chromosal defect which would result in the spontaneous abortion of about 50% of our conceptions (actually, more like 66).  It’s called a balanced reciprocal translocation, and the anomaly is so severe that the fetus dies within about 12 weeks of conception.  We managed to eventually have a son and daughter, but both are carriers who will in turn someday face the same daunting experiences we endured.

Anyway, back to the ER.  As I was registering to get my D and C [dilatation and curettage], a woman barged in the front door demanding an abortion immediately.  The attendant told her she would have to wait her turn, to which she responded that she’d already had six abortions and it was no big deal, couldn’t they just rush her case a little since she had several more appointments to keep that day.

What a contrast we presented.  One woman who was devastated by the loss of four babies countered by a woman who could so blithely give up one after another. My daughter is getting married this summer and, as I said before, she is a carrier.  They will have to undergo genetic testing to confirm what we already know, and that is she will most likely have to endure the heartbreak of numerous miscarriages.

I am a firm believer in a woman’s right to choose to abort, but there must be a sane limit to the ability to obtain an obscenely large number.  And it’s difficult to envision the circumstance where the need to have such a late-term procedure would be truly justified.

Jun 3, 2009 @ 12:18pm

Dan Savage argues with a Dish reader:

Would a woman who ran out of abortions really be a fit and loving parent to the kid(s) born to her after she hit her abortion limit? What kind of a mother that woman would make?

Thu Jun 4, 2009 @ 7.08am

A reader writes:

I found the testimonial on serial abortions deeply hypocritical. Here is one woman condemning another woman for having six abortions when she herself has gotten pregnant at least six times, knowing that each fetus had a 66% of miscarriage. Furthermore, she fully expects her daughter to make the same choice — to continue getting pregnant as often as possible in the hopes of eventually having a live baby. I’ll stress that I don’t think she made the “wrong” choice, but she did make an explicit decision that the conception and subsequent death of four fetuses was worth the births of two babies. How is that somehow more noble than a woman accidentally becoming pregnant and then aborting the fetus? The woman seeking her seventh abortion almost certainly didn’t intentionally become pregnant, while the woman suffering her fourth miscarriage did — despite the risks and the knowledge that she might well be creating a child just to let it die. If the question is one of responsible behavior, I’m not certain you can logically decide between these two choices.

But reproductive choice isn’t about responsibility. It’s fundamental to human liberty exactly because the stakes are so high, so personal, so deeply felt and so resistant to philosophical, legal and moral theorizing. Every person has a right to decide for herself when to become pregnant, why to become pregnant and what to do after becoming pregnant. But casting judgment on the “irresponsible” behavior of others while turning a blind eye to the moral complications of one’s own position is hardly laudable, or even useful in the abortion discussion.

Jun 2, 2009 @ 5:23pm

It’s So Personal: Preparing For The Worst

A reader writes:

My third pregnancy resulted in the birth of twin girls – one with horribly deformed internal organs and the other normal.  I had chosen not to have testing done, because although I believed in the right to choose, I did not think I would ever choose abortion for myself.  The doctors wanted to do surgery on our daughter that held a 10% chance of survival and promised another decade of surgeries for a child whose disability would leave her blind, mute and severely mentally retarded.  We had to make the excruciating decision of whether to allow that course of events.  We chose to baptise and let her return to God.  We held her as she died three hours later.  Her sister, blessedly, survived after a 2 month stay in neo-natal intensive care.

The struggle and torment of burying and grieving for a child, and explaining to the three older siblings why we only brought home one baby, was an ongoing horror that lasted years.  It took a huge toll on our marriage for a long time.  The next time I got pregnant, I was terrified.  Your odds of having a child with birth defects goes up with age and previously affected children.  I did not want to be blindsided by another child dying in my arms.  I did not think my family would survive another experience like that intact.

I decided to have every test they offer this time.

I found out that I would get the amniocentisis results with only six days to decide and procure termination should I have another child with a life ending abnormality.  Six days.  If I struggled with indecision too long I would have to travel to Kansas.  Being unwilling to put my family through that situation again, I had the number of the clinic ready to make the appointment immediately if my amnio revealed another child doomed to suffer or die.  This time, thankfully, I had one healthy baby girl.

What happened to Tiller is a crime.  What is also a criminal is that we already have a nation where women are forced into scenarios where all the choices are bad and made worse by the lack of freedom handed unequally to our gender in being able to access a doctor and determine what is right for our children and our families. This is Terry Schaivo territory.  If the Christianists ever succeed in completely outlawing abortion, women in my situation will be forced to watch our newborns gasp their last breath and grow cold in our arms.

Jun 3, 2009 @ 11.31am

It’s So Personal: An Unforgiving Family

A reader writes:

Thanks for your stories from the families that went through agonizing choices. I come from a family of Christianists. They may have started out Christians, but I think the abortion debate started them on a path away from the followings of Jesus to the followings of some fairly wacko evangelicals. I respect them for holding on to beliefs that they cherish, but I found over time my respect for them, as thinking and supposedly loving human beings, has diminished. foetus-inset

I married late, at age 40, and my husband and I had no plans for children. As we were waiting for his vasectomy to “kick in”, using condoms, I somehow became pregnant. Ultrasound revealed that the pregnancy was ectopic. I was not well, feeling sick and in pain every day. There are extreme risks to the health of the mother in allowing an ectopic pregnancy to come to term.

I would have kept the whole issue to myself and not shared it with my family if it hadn’t have just so happened to coincide with a long-planned family reunion. I had to give a reason to not attend the reunion so I decided to share my predicament with my family. I chose to terminate at six weeks. My family heartily disagreed, saying that it was my duty to risk my life for a pregnancy I never wanted and had taken rational steps to avoid. This happened in 2007 and my tenuous relations with my family have not recovered. It still is a profoundly deep hurt that aches within me that my family felt that it would be proper for me to die rather than take the medical procedure that would save my life. My family seems to value the six week of cell growth over the person they have known for 40 years. Birthday wishes seem hollow; them checking in with me to see how I am doing seems hypocritical of them since they all would have chosen that I die, along with the fetus, during a painful ectopic pregnancy.

My story is nothing compared to the stories of women who were carrying faceless babies, babies with no brain development, or even dead babies and the mothers were unable to find medical help except by traveling to Kansas to obtain a late-term abortion. Your line “I still cannot in good conscience support these abortions” sends me right back to holding the phone and listening to my mother, sisters, father and a brother in law tell me that I was damning myself by choosing to save my own life rather than risking my life and the unborn fetus’ life by utilizing modern medicine. If the anti-choice position is supposed to be “pro-life”, I cannot understand how my actions, saving my life, don’t fall under that same rubric.

I have valued your open-mindedness and that you challenge your long-held beliefs as new evidence arises and that you have the courage to occasionally change your views as facts change. But I cannot wrap my mind around you reading these accounts and still believing that the right course of action for these mothers, and for me, was to risk their lives or bring into being children that will not have one day of fully lived life; that the right course of action would be to impoverish their entire families by committing themselves and their budgets to impossible medical bills with no hope of finding a healthy baby at the end of their efforts.

I have to say I am beginning to believe that these abortions, given their excruciating moral and personal choices, may be the most defensible in context of all abortions. And yet they seem to be taking life in a more viscerally distressing way. I need time to think and rethink these things. I would not have without reading these extraordinary accounts.

Jan 4, 2009 @ 8:17am

Should Men Even Have A Say?

A reader writes:

You state that in hearing the stories of women who have had to make agonizing personal choices over abortion, you “need time to think and rethink these things” and that you “would not have without reading these extraordinary accounts.”

Exactly.  Of course you do.  Of course you never thought of abortion like these people have.  You’re a man.  You’ve never been pregnant.  You’ve never been married to a woman.  You’ve never had that woman put into this kind of choice.

Every time I see some new abortion bill being signed, further making it harder for a woman to seek an abortion, it’s always signed by an old man at a table surrounded by other old men. Sometimes there’s the occasional big-haired Christian old woman nearby – a fig-leaf.  Abortion restrictions are almost always made by men imposing their views on women. The only women I know who support abortion restrictions are ones who’ve never been in the position that the overwhelming majority of women seeking abortions find themselves.

Of course women have a unique and often more legitimate perspective on abortion. But to strictly genderize the debate is a red herring. After all, Roe was decided by seven old men.

Jun 4, 2009 @ 6:18pm

A reader writes:

Your reader writes, “There are extreme risks to the health of the mother in allowing an ectopic pregnancy to come to term.”  I am sure you will hear from people with medical credentials on this, but for what it’s worth, let me make the point that it is impossible for an ectopic pregnancy to come to term.  An ectopic pregnancy (literally, a pregnancy “out of place”) is the result of the implantation of a fertilized egg in the fallopian tube rather than in the womb.  A baby cannot develop in the fallopian tube; that’s not what it’s for, and not what the baby needs.  Ectopic pregnancies, if left alone, result inevitably in the rupture of the fallopian tube, the death of the embryo, and possible peritonitis and death for the mother.

This is thus a completely different scenario than those described by readers who aborted seriously defective fetuses at 7 months’ gestation, because they thought it would be easier on them and on the baby for the baby to be killed in utero than for it to be born dead or die as a neonate.  I find this grotesque–to kill your dying child sooner rather than later?  I’ve had friends who have learned during pregnancy of defects in the fetus that were not compatible with life, and in each case the friends have cherished every moment they had with their unborn children, even as they mourned the fact that this baby would certainly die before, at or soon after birth.

Infant death is tragic.  It has also been a part of human experience since there have been human beings.  Late-term abortion doesn’t make that fact go away.  It merely means that our handicapped children die at our own hands, rather than simply being taken from us.  Isn’t it sad enough to lose a child, without adding abortion to the mix?

Jun 4, 2009 @ 3:44pm

It’s So Personal: Holding On

A reader writes:

My wife and I had our lives forever changed by an unexpected pregnancy that began one year ago, almost to the day. It was to be our first child, Zoey, and we were both very scared in the beginning. Everything had gone perfectly, when nearly four months into the pregnancy, we paid a routine visit to the hospital for an ultrasound session. The doctor’s face all of a sudden became grave, and he told us that not all was well.

Zoey had what is called a cystic hygroma, a buildup of fluid on the backside of the neck. These can, in some cases, go away, but in other cases they can grow, leading to hydropsy, which can cause the baby to die or be born in a severely handicapped state. Hers was a severe case. I will never, ever be able to forget those minutes inside the doctor’s office. They were the longest and most heart-rending of my life, and exponentially so for my wife. The pregnancy had forever changed our lives to begin with, and now everything had changed even more drastically.

In Korea, where we live, there really is no social issue regarding the rights and wrongs of abortion. The common phrase for aborting in Korea is to ‘erase’ a child, generally used in cases of pregnancy outside marriage, and this well illustrates the no-issue attitude held by the majority of the nation’s people. Virtually every OB/GYN clinic is an abortion clinic, and the procedures are as easy to get as anything. Further, hospital staff put great pressure on mothers to abort in cases of abnormality, big or small. This was our experience.

We returned to the clinic in a few days as instructed to repeat the ultrasound and monitor the cystic hygroma, and it had grown even in that short time. The doctors immediately began to prepare for the abortion without even so much as asking my wife what her choice would be, and she had to stop them. Then things got ugly.

Their attitude became extremely rude, and they condescendingly asked if we had a religious reason for resisting the abortion. My wife calmly explained to them that we’re Jehovah’s Witnesses, and that we only see abortion as a choice when the mother’s life may be in danger. At this point, the staff gave up, and sent us away without so much as an encouraging word.

We began to have personal doubts as to what to do, feeling torn apart. If the child was sure to die, then wouldn’t the most merciful path be to end its life before it began to suffer? This was something we had to grapple with very painfully, but we prayerfully decided that it would not be right for us to end the child’s life. There are a great many Jehovah’s Witnesses in Korea, but only the top hospitals in the country respect our beliefs, often having staff who specialize in dealing with us. One prestigious hospital, in particular, is famous for this, and we immediately sought it out and were connected with the senior OB/GYN specialist.

He clearly laid out the situation to us, and deeply respected my wife’s right to do as she chose from day one. There was little chance for our daughter to survive to birth, and even if she would, she would likely either die soon thereafter or have to live with major problems. Our sadness didn’t go away, but it was indescribably comforting to be understood and respected. Over the next weeks, we began to come to terms with our baby’s situation, relying on God for strength and praying for the most merciful outcome, whatever that would be. My mother in-law came and stayed at the house to help my wife, which is a nice Korean custom, especially if you have a wonderful mother in-law. It was a time of great fear, but we learned to cope, and little by little, we were overcome by a deep peace of mind.

And then we actually got to know Zoey. She began to kick, she began to jump whenever she heard music, and she exhibited all the signs of being a completely happy baby, just as she had all along. She was an absolute joy. But every time we went back to the hospital, the doctor’s expression would be that much more grave, and his tone that much more somber, explaining to us that her hydropsy was worsening, but that her heart was unusually strong.

Three months went by, and I can tell you without a doubt that they were the happiest three months of our lives. We treasured each moment we spent with Zoey, knowing that our days with her were numbered. There were a great many tears, and there was indescribable sadness, but there was an incredibly deep tranquility and peace of mind that transcended it all.

Later in November, Zoey died. Her heart held out for an exceptionally long time considering her condition, but the time had come when it could beat no longer. My wife told me one day that she knew it had happened. We packed up her things and went to the hospital, and within ten hours she was in labor, giving birth, but with a great void in her heart where the joy of a new mother was supposed to be. It was crushing, but there was peace in knowing that Zoey’s life ended mercifully in the womb. And there is indescribable peace in the belief that we will someday be reunited with her again. It’s been a long and slow road to recovery, but my wife is doing well. We went to Hawaii in February to scatter the baby’s ashes in a beautiful, untouched place, and were able to find a great deal of closure.

I’m not saying anything about anyone else here or what they’ve done — I learned firsthand the indescribable sadness and torment of being told your child in the womb has a life-threatening condition, and my heart goes out to any and all parents who’ve had to deal with such a situation. But the decision we made to keep our baby alive was the very best thing we could have ever done. My wife and I got to know the greatest love of our life, and it changed us forever in ways I can’t even begin to express.

Jun 4, 2009 @ 4.52pm

It’s So Personal: The Gay Fathers

A reader writes:

I’m not sure I feel comfortable having the all the details shared on the website, but I wanted to give you another story, this time from the point of view of gay fathers.

We had had a difficult road with our surrogacy, but by the 20th week, everything looked great — all of the tests and previous ultrasounds on the twins had been fine, the pregnancy had been easy, and we had (and have) a wonderful relationship with our surrogate and her family. We had flown halfway across the country to be with them for a week to celebrate, and plan the baby shower.

Then out of nowhere, a nightmare. The technician brought us into the doctor’s office, where he delivered the news that one of the twins had a grievous birth defect, one that would not only doom her to a short life of pain and suffering, but also one that would endanger the development and delivery of the other twin and the health of our surrogate. We were in the Midwest, and the specter of having to brave the protesters in Wichita was more than we thought we could put her through (or take ourselves). So we made arrangements to fly everyone home with us for the procedure, and hope that our other child would be OK.

I grieve every day. I agonize over the decision we made, yet I know it was the right one. I know because as I bring this to a close, my infant daughter is waking up and needs her bottle, and seeing her smile up at me lets me focus on the now and the future, and not the sadness of what might have been. As one of your other readers who shared her story remarked, it’s an intensely personal choice best made by individuals; we all had that same primal feeling that as painful and as heart-wrenching as it was, the four of us (my partner and I, our surrogate and her husband) had made the right decision.

Jun 4, 2009 @ 9.21pm

It’s So Personal: What Guilt?

A reader writes:

I cannot help but think you are cherry-picking your printed stories, highlighting those who have had enormous difficulty with abortion, simply because you yourself have difficulty with abortion.

Here is my own story. I got pregnant when I was 22 by my then-fiance (now husband).  I was, at that time, not ready to be a parent.  I certainly could have done it, but I wasn’t personally ready. And to me, if I’m not ready to have a child, I should not have one.  Children are a big responsibility – not one that one should assume just because they got unlucky one night.

After I took the store-bought test, I immediately scheduled an abortion (which was a trick, since I had no privacy at work).  First, I called a place I whose ad appeared to be offering abortions (“Pregnant?  Don’t want to be?  Call us”).  I didn’t know about fake pro-life pressure clinics at that time (aka “crisis pregnancy centers”).  They didn’t tell me their agenda, just scheduled me for an appointment. But I could tell something was weird, so I canceled it.  I only later discovered that they put out misleading ads to trick women.  I think trying to trick desperate, pregnant women is about as shady as one can get.

My fiance drove me to the hospital on the day of the abortion. I was quickly examined, then given an ultrasound to make sure I was really pregnant. Unlike your previous reader, who felt that someone should have forced upon him some kind of waiting period or something, I think such measures are both disingenuous and disrespectful.  Obviously waiting 24 hours would not have magically made him a better person, dedicated to his girlfriend’s welfare and desireous of a child.  It’s not the state’s job or the clinic’s job to make him do whatever he now thinks is the right thing.

I chose to have a medication abortion (as opposed to surgery). At that time, methotrexate was used.  Medication abortions are basically an induced miscarriage.  A lot of the “orientation” that the kindly woman in the conference room gave me consisted of explaining to me how this could hurt a LOT and I could bleed a LOT.  It’s essentially a lesser form of labor, and can be scary if you are not prepared.  For me, it definitely was very painful.  BUT – I have since gone through labor twice, and I can safely say that labor is MUCH worse.  I am always bemused when people say “abortion is painful and bloody” to deter abortion.  Like birth is somehow not painful and bloody?

Since then I’ve been fine. A few nostalgic moments.  I’ve never cried about it.  I am not sad about it. It was the right decision.  Life goes on.  People do not tend to spend the rest of their lives wallowing in guilt and misery because they terminated a pregnancy.  They go to school, they fall in love, they get married, they have children.  One out of every three women in America has had or will have an abortion at some point.  The stories of ongoing misery that you are choosing to print are the extreme outliers.

We do not cherry-pick these emails. This thread began by dealing with late term abortions, and why they occur. And we did our very best to provide the broadest range of experiences and viewpoints we could.

Jun 5, 2009 @ 9:29am

It’s So Personal: Ectopic “Miscarriage”

A reader writes:

My heart goes out to the woman who had the ectopic pregnancy, whose family considers her ending of that pregnancy an abortion. But it wasn’t really an abortion. Ectopic pregnancies don’t last. They aren’t in the uterus. They simply don’t go to term, except in extremely rare and bizarre cases. You have one choice: seek treatment immediately. Or wait for a natural miscarriage and risk major abdominal surgery, infection, infertility, and death. The baby will not live regardless.

I had an ectopic pregnancy scare in January. (It turned out to be a run-of-the mill none-ectopic miscarriage.) My doctor didn’t hesitate to tell me to take a chemotherapy drug that ends the pregnancy. But she didn’t use the word “abortion.” No obstetrician would consider ending an ectopic pregnancy an abortion. No pro-life obstetrician would refuse to treat one and send you off to Planned Parenthood. They would consider it a medical necessity — a treatment of a life-threatening illness.

Ectopic pregnancies are extremely common, and I’ve known pro-life woman who have had them and had them treated without hypocrisy. It would sicken me if a woman was that twisted about abortion rights that she would risk death to save a six-week old fetus that CANNOT be saved.

My advice to this woman: next time you have an ectopic pregnancy, tell your family that you are having a miscarriage. That’s the truth. But don’t expect them to feel for you. Women who have miscarriages are the great silent minority in America. It’s not acknowledged. Many people don’t understand why I sank into a deep depression after mine. To many pro-life advocates it’s only a baby if it’s aborted by man. If God aborts it, they simply don’t care. If you want evidence of this, try to find one song about the loss of a child by miscarriage. There’s exactly one — a country song — and many radio stations BANNED it because it smacked too much of abortion. The twisted irony astounds me.

Jun 6, 2009 @ 1:09pm

It’s So Personal: What Do You Mean, Viable?

A reader writes:

My twins were delivered at 29 weeks and 3 days because I had severepre-eclampsia.  If I had continued to carry them I was at risk for seizures, kidney failure, and a ruptured liver.  My blood pressure was so foetus-insethigh that there was a risk the boys’ oxygen supply would be cut off, leading to brain damage.

So I had a C-section.  The boys were in the NICU for 9 weeks. Owen in particular had a hard time; he was on oxygen and IV for a long while, had a heart murmur, and aspirated his milk.  Retinopathy  affected both boys, so they both wear glasses and always will.  Oliver had surgery for a couple of hernias.  They are now three and speech delayed, so we’re going through testing to determine if they’re autistic.

The reason I give you a brief outline of my boys’ birth and development is because they were born nearly six weeks after a fetus is considered “viable”.  To be perfectly honest, I don’t view my children as having been viable when they were born; I couldn’t feed them by mouth (the suck/swallow reflex doesn’t develop until at least 35 weeks), they couldn’t breathe on their own, their digestive systems didn’t work properly, they couldn’t regulate their body temperature (having no body fat), etc, etc.

In the abstract, I would say I am pro-choice, but an abortion was not something I could personally choose. I certainly treasure my children regardless of the challenges they continue to face.  But as your readers have demonstrated, abstract concepts become difficult to apply in the face of deeply personal circumstances.  One of the abstract concepts that is too often bandied about is the idea that at a certain number of weeks a fetus is suddenly viable. But my 29-week babies were not viable at all without massive medical intervention.  Regardless of its gestational age, a fetus that is faceless or only has a brain stem is clearly not capable of sustaining life.  So why do the number of weeks that have passed since conception determine whether the pregnancy can be terminated or not?

There are no legal limits on abortion in Canada.  The law that governed abortion was overturned by the Supreme Court of Canada in 1988 and nothing has taken its place.  I personally think that’s a shame, because I’d like to see a public discussion of what we as a nation think is appropriate with respect to abortion and I’d like to see some guidelines in place.  Having said that, abortion rates have been steadily declining in Canada and are now lower than the U.S. (97,254 abortions in 2005 compared with births of 364,085), so maybe we are doing something right.

It seems to me that rigid formulas determining what options are available based solely on gestational age totally miss the point – you can’t just plug the data into a flowchart and ascertain the appropriate outcome.  This is personal, and the best system is one that assists mothers in coming to the decision that’s right for them.

Jun 7, 2009 – 8:21pm

The It’s So Personal Series

Kate Dailey understands what we are trying to do.

Jun 8, 2009 @ 9:42am

It’s So Personal: A Life Saved By Choice

A reader writes:

I know that you and many others do not approve of late-term abortions and those who perform them and I understand the reasons.  However, there is one aspect of this moral dilemma which I have not seen addressed by you or the media: the fact that clinics like Dr. Tiller’s can help SAVE the lives of unborn children. Here is my best friend’s story…

My friend “Katie” is pro-choice, and her husband “Rob” (raised Catholic) always considered himself pro-life.  They have two wonderful children, one of whom is a special needs child.  With all of the complications of raising their autistic daughter they decided against having a third.  But Mother Nature vetoed this decision and Katie became unexpectedly pregnant at the age of 39.  Though unplanned, there was no question they would keep the child. So they initially decided against any invasive screening.  However, due to her age and other factors, the doctors recommended extra testing.  And sure enough, one of the tests came back with measurements that indicated chromosomal issues and/or heart deformities.

It was then that the reality of their situation sunk in. Rob started seriously thinking about what their situation might be if they had another child with even bigger medical issues and perhaps Down syndrome.  So it was Rob who asked Katie whether they should get genetic testing.  She agreed.  In the meantime, Rob was experiencing ambivalence about the future and what the best choice might be.  Time became a factor; Katie was starting to show and was bonding with the baby, whatever its condition.  Rob, on the other hand, became more and more certain they couldn’t handle another baby with severe health issues.

Katie and Rob started discussing the “what ifs”.  What if it had Down’s – keep it or not?  What if it didn’t have Down’s but major cardiac malformations – keep it or not?  All this they had to think through in a short amount of time while they waited for the genetic test results. They still were in an “acceptable” window to terminate.  Katie knew that if the fetus had any major issues, Rob wanted to abort.  She, the “pro choice” one, was not so sure.  Although the clock was ticking, they agreed to wait for the test results.

Finally, the genetic results were in.  No Down’s, but other signs still suggested major heart issues were likely.  More specialists and testing to be done, but they would have to wait another few weeks, since the doctors had to see the heart performing on an ultrasound at a later stage of development.

It seemed like decision time. Rob wanted to terminate, Katie was unsure. They were in a bind -well into the second trimester at this point.  Katie knew that if she waited any longer her OB/GYN would not be able to terminate.  Katie was in anguish.  I can’t tell you how many times we talked that week about what to do. Katie was on the verge of siding with Rob and scheduling an abortion.  She called up her OB about making an appointment.  Instead, her doctor gave her another option which Katie thought was off the table: waiting until they knew for sure.  If they still wanted to terminate, the OB knew a name of another doctor who would abort the child up until viability.

Although to Katie it seemed more ethical to terminate earlier rather than later, there was still a possibility that the fetus was generally okay.  In her heart she knew she could live with a late abortion if the fetus would die eventually anyway, but she didn’t know if she could live with the uncertainty of aborting a child which might have been healthy. So they agreed to wait.

After what seemed like a lifetime, they finally got the good news: a heart with no fatal malformations. It did have a minor defect, but it appeared operable without any long term complications. So they kept the pregnancy going. A few months later their daughter was born. After some surgery, she is now is a happy, healthy child.

Because Rob and Katie had the option of going to late-term abortionists like Tiller, they chose NOT to have an abortion. Without the ability to terminate after 18 weeks, they would have aborted much sooner, given the 90% chance of serious defects. But just knowing they had the option of waiting without limiting their choices allowed them to obtain the critical information. And that choice ended up saving their daughter.

Jun 8, 2009 @ 5.36pm

It’s So Personal: Anencephaly

A reader writes:

In August 1989, my then five-and-a half-month pregnant wife and I went in together for a routine sonogram at her OB’s office. The sonogram showed that the fetus was anencephalic.

Immediately after the test we sat down with the OB in her office where she told us the reality of what we were facing. We scheduled a hospital visit for the next day. At the hospital they induced labor and the pregnancy was terminated. The baby was a little girl and she died during delivery. We were able to hold her for about an hour after the procedure. We named her and buried her.

It was a traumatic time and decision, but it was the right decision to make. How can you make a woman carry a baby to term when she know that the baby will die soon after it is delivered? Psychologically how much damage does that do to the mother and the family who cares for her?

Luckily for us, 14 months later we had a very healthy baby girl. A girl who is set to graduate from high school at the end of this week.

Over the past day, I have thought a lot about the OB who sat down with us almost 20 years ago and gave us the facts about what we were facing. The doctor was caring, empathetic, and honest. I’m going to contact the doctor who helped us in the next week just to say thanks for what she was able to do for us so long ago.

Jun 10, 2009 @ 1.30pm

It’s So Personal: Holoprosencephaly

A reader writes:

While I’ve always considered myself a pro-life conservative, I do admit to having mixed feelings about abortion.  I’ve been following your series on late-term abortion for the past several days, and I thought I’d pass on our story.

About 5 years ago, after a lot of effort, my wife got pregnant with our second child. We did the regular genetic screening (I can’t recall the name of the test, but it was just a simple blood test). It came back positive for Down’s Syndrome, but only at a slightly higher risk. Our OB/Gyn said the odds for someone my wife’s age (27) to have a Down’s baby were about 1 in 10,000. The positive test result put the odds closer to 1 in 150. He recommended we go to a doctor who specialized in high-risk pregnancies to confirm there was no problem. She was 5 months along at the time.

During the additional testing, we had an ultrasound done with an amazingly high-tech machine. During the scan we kept asking the tech if she saw anything, but she kept telling us she wasn’t legally allowed to say one way or the other. We sat quietly until the end of the test, at which point the tech turned to us and said, “Well, I’m going to be honest with you, because it’s the only way I know how to be. I see some problems with the head.”

I could hear my wife’s breathing quicken, and my hands started to shake uncontrollably. The doctor came in and said he saw holoprosencephaly, which, as we learned, essentially means that the brain did not divide into two hemispheres. In fact, although we were 19 weeks along, the brain had stopped developing at 11 weeks.

He recommended a second scan with a different doctor. That doctor verified what the first doctor said, but his diagnosis was even worse. Not only had the brain stopped developing, but our daughter had a malformed heart, her bones were horribly misshapen, and her face consisted of just a hole where her nose should be. (He showed us a picture of her hand; around the middle of the fingers, the bones turned to the side at almost a 90 degree angle.)  The doctor maintained that even if she were born alive, she would immediately die because she wouldn’t have the brain function to work her lungs. “Birth defects don’t get any more serious than this,” he said.

All three doctors involved recommended abortion. It didn’t take us long to agree. All I could think about was trying to tell my wife, “You need to carry this baby another 3 months, and, assuming she doesn’t die in the womb and put your life in danger, you can deliver a horribly deformed child that will die immediately.” Even though my wife’s health was not in immediate danger, the psychological damage of this (for both of us) would have been devastating.

We went ahead with the abortion. It was a two day procedure, and truly the most horrible days of our lives. I have no delusions about what we did, and to this day I’m aware that we chose to abort a baby we tried so hard to have. At the same time, I thank God every day that we live in a country where we could do it.

Anyway, thanks for letting me get this off my chest. It’s something I long to talk about, but it doesn’t exactly come up in regular social circles.

Jun 11, 2009 @ 1.18pm

It’s So Personal: Marfan Syndrome

A reader writes:

My wife has Marfan Syndrome, a condition that (among other things) leaves people susceptible to sudden dilation or aneurysm of the aorta. It weakens the walls of the aorta with no symptoms, followed sometimes by catastrophic tearing.  When it tears, there’s an 80% of death – 65% en route to the hospital, 15% at the hospital – and only 20% survive through aortic graft surgery.  Pregnancy greatly exacerbates that risk.

We knew about the dangers during my wife’s first pregnancy, so she had repeated measurements of the aorta.  It got a little bigger, but never to the danger zone. Our daughter was delivered by C-section without serious complications.  Once the aorta gets bigger, however, it never gets smaller, so the pregnancy left my wife on the precipice of serious medical catastrophe.

A few years later came the second pregnancy.  Her OB/GYN sent her to a Marfan specialist at Johns Hopkins.  He treated us like we were murderers – or rather, treated her like she was a slow-motion suicide.  He insisted on an immediate abortion.  He plied us with his recently published study demonstrating that all of his previously pregnant Marfan patients died during the second pregnancy.  And he pointed out that all the women in his study were at least 5 to 10 years younger than my wife at the time.

We decided to proceed instead with the help of an OB/GYN who specialized in dangerous and difficult pregnancies, fighting to make them safe and successful.

The aorta grew a little bigger, approached the danger zone but never crossed the line. Then, a catastrophe!  She was walking down the hallway in the Senate, where she worked, when a sudden intense back pain caused her to fall – luckily, just outside the office of Sen. Bill Frist, M.D., who immediately diagnosed the pain as an aortic dissection and got her to Georgetown. She was stuck in a big blue bag of ice, doctors performed a C-Section, the operating-room gurney was spun around, and other doctors came in to replace the part of her aorta that had burst.

The tough decision was not at Johns Hopkins, where we ignored (foolishly ignored, you could say) this cold research professional with his certitude that pregnancy = death.  The tough decision was at Georgetown, in the few minutes while we were waiting for the MRI results to confirm the aortic dissection and set the wild night of surgeries into motion.  My wife and I discussed what to do if there were complications during the C-Section and it came down to saving her or saving our newborn son.

Our son is now 16, and my wife is fine. So is our daughter, age 21.

Jun 12, 2009 @ 1:48pm

It’s So Personal: The Lesbian Mothers

A reader writes:

Last January, at the age of 41, I conceived my first child, a child I have wanted all my life. At 22 weeks into the pregnancy, my partner and I went for a routine ultrasound at a clinic in Overland Park, Kansas, near our home in Lawrence. We and all the expectant grandparents were eager to find out the baby’s gender. Before the appointment, my mother wrote a quick email: “What time is your ultrasound? I’m excited!! Let me know what gender my “Grand” is! Love, Mum.xoxoxoxo”

Our appointment began jovially. The perinatologist and nurse joked about names, and at one point, the doctor called the baby a “little rascal.” As the ultrasound continued, the room grew quiet. The perinatologist scanned the baby’s head again and again. He finally announced, in a solemn voice, “I’m seeing some things in the baby’s brain that concern me.” Time stopped, and everything in the universe shifted. Holding my partner’s hand, I struggled to listen despite the thick blanket of grief that settled over the room.

The doctor continued, “The baby has holoprosencephaly. It’s a brain malformation in which the forebrain fails to divide. Most of these babies die before term. Those that are born have severe disabilities.” He finally took a deep sigh and started to deliver the especially delicate part: “I don’t know what your beliefs are but some people would terminate a pregnancy of this nature. Since you are 22 weeks along, you would have to go to Wichita for the procedure.” Everyone in the room knew this was shorthand for, “You would have to see George Tiller, the infamous late-term abortion doctor. No one else will help you at this point.” Numb, I asked to know the baby’s gender. He placed the ultrasound wand back on my stomach and read the grainy image: “It’s a girl.” We walked out of the clinic with blank stares and wept in the car.

At home we looked up the diagnosis. The first pictures we saw took our breath away: babies with only one eye, noses on their foreheads, severe cleft lips. We read the unfavorable statistics: Most babies would die before term. Those that didn’t would likely die shortly after birth. Few would live beyond a few years. They would have problems with every human function: feeding, sleeping, walking, talking. It looked like babies with HPE who lived would be subjected to endless medical procedures and have little quality of life.

Devastated and sobbing so hard that we could barely speak, we called George Tiller’s clinic. The woman on the other end of the phone was compassionate and gentle. We set up the appointment for the grueling week-long procedure. We would be required to undergo counseling. The process would begin with an injection to stop the baby’s heart and then a slow induction of labor. After a few days I would deliver a still baby, a baby that had kicked harder than ever since we received the devastating news.

We spent the longest weekend of our lives seeking the advice of everyone: our parents, women in my partner’s online fertility group, coworkers with expertise in developmental disabilities. And to everyone’s surprise, we changed our minds. A lifelong pro-choice advocate and feminist, and a person who was finally, after so many years of yearning, a mother, I simply could not stop the beating heart of this baby inside me. We decided that if the baby lived to term – a baby we named Alice in the course of the weekend – we would love her and get her the best medical care she could have.

Although my partner and I decided not to terminate a pregnancy deemed dire at best and fatal at worst, we did need medical care appropriate to our situation. Scientific progress – and some would even say the hand of God – has enabled us to detect severe disability earlier and earlier in a pregnancy. But in some cases, such as mine, a potentially fatal deformity went undetected until one day over the limit for the procedure to be performed in a reputable medical facility. We were left with an agonizing decision. To add insult to injury, we had to make it knowing that we would have to walk through protestors in Wichita, protesters who felt moved to yell at us without the slightest inkling of our particular situation. Those with unchecked emotional fervor should put themselves in our shoes: What decision is most humane when you may have created a life filled with almost certain suffering?

Without the few doctors in the U.S. like George Tiller, we would have felt even more abandoned by a country too busy posturing for political advantage to do the hard work of reconciling its moral beliefs with its equal desire for scientific progress. If we have learned anything, it’s that we have to start this discussion with the particulars of each situation. It’s not politically expedient, but it’s what could move our country forward on the issues of sex, life, death, and the role of science and medicine.

Below are some followup posts we’ve run in the years since publishing the “It’s So Personal” letters:

Sep 6, 2009 @ 8:14am

It’s So Personal
by Patrick Appel

This video of a couple who choose to take their son to term despite his being diagnosed with a terminal illness in the womb is heart-breaking. It’s hard to get through without bawling.

(Hat tip: Dreher)

Mar 5, 2012 @ 2:29pm

When Is Abortion Merciful?

Emily Rapp, a mother whose two-year-old son with Tay-Sachs is dying slowly and painfully in front of her eyes, shares her anguish:

I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.

Bonnie Rochman, who wrote about Rapp last year, draws a distinction:

For sure, there is a huge difference between aborting a child who has no chance of survival and a dreadful quality of life in his shortened months on earth and a child with Down syndrome, who — depending on his abilities — can learn to read, to ride a bike, to live alone. Children with Down syndrome born today live, on average, until the age of 60; children with Tay-Sachs don’t reach kindergarten. Even if they lived that long, they are fundamentally brain-damaged, incapable of practicing their ABCs or coloring in the lines. Is ending one type of pregnancy wrong and another right?

Apr 14, 2012 @ 7:40pm

It’s So Personal: A Video Version

A reader writes:

Here is the story of Danielle Deaver. As she explains in the video, Danielle’s water broke at 22 weeks.  Doctors informed her that her fetus had virtually no chance to survive. With abortion banned after 20 weeks by Nebraska law, she was unable to stop a pregnancy that ended with her giving birth to a child who lived for 15 minutes.  The law – the Unborn Child Pain Awareness Act – is based on the disputed idea that a fetus can feel pain beginning at 20 weeks; ironically, the Deavers’ sought an abortion because of concern that the infant would suffer while it died, trying to breathe.

Apr 16, 2013 @ 2:18pm

It’s So Personal: Hydrocephalus

A reader adds another horrific and heartbreaking medical condition to this collection:

As someone who last year chose to terminate two pregnancies for massive hydrocephalus (all brain structures blown away by the pressure of the fluid), I find it very frustrating that the foetus-insetdiscussion of North Dakota’s law banning abortions for genetic defects largely centers on children with mild cases of Down’s Syndrome.  Because the conversation focus is on a trisomy, a case of improperly separated chromosomes that might happen to any couple, but almost certainly only once, it misses the truly spectacular cruelty of this law.

We don’t have a diagnosis, but my husband and I must have a recessive gene that combines to cause hydrocephalus.  For every pregnancy, we have a 1 in 4 chance of this happening.

There are lots of diseases like that.  Tay-Sachs is another fatal example.  Because of this, I spend a lot of time chatting on an Internet forum with other women in my situation.  They approach their pregnancies in few ways.  Some absolutely know that they will carry to term, with the hope of spending a few moments with their baby while it lives.  Some are so terrified that they use every kind of expensive fertility technology to avoid carrying a baby that carries a fatal flaw.  Those cost tens of thousands of dollars, with no guarantee that the pregnancy will take.  Some women choose to terminate their pregnancies if the genetic test come back wrong or it shows on the anatomy scan.  But they want living children.  They pin their hopes on a 3 in 4 chance of a healthy baby.

One of the women waiting on the genetic test results has a three year old at home on hospice care.  She is terrified of losing another and will terminate if the tests come back wrong.  She can’t watch another die at age three.  One woman had a baby boy who lived to be nearly one before he died.  Her second baby boy died at eight months.  Then she got a diagnosis and was able to test during her third pregnancy – another boy. It had the disease.  She chose to terminate.

The thing I cannot believe is the unbelievable, astounding cruelty of anyone who would dictate her choice in this.  Force her to birth and care for another dying baby?  She knows what that means!  She chose not to!  How can anyone be so cruel that he would tell her she must go through pregnancy, birth, months-long death of her baby before she can try again to have a living child?

Trisomies are one thing, and they are most often fatal.  They do not usually lead to living children that can interact socially. Mostly healthy Down Syndrome children are the exception – not a good example for policy-making.  But for almost all couples who come up against that tragedy, a trisomy is a one-off.  The people who face the dilemma of a recessive gene that kills their children, at different paces and with different amounts of pain – those are the people who know what it means to choose to go through with or terminate a pregnancy for genetic reasons.  How dare anyone else tell them which they should do?  Who would give them additional burdens if they get the awful diagnosis?  Who would do that?

Jul 30, 2013 @ 2:19pm

It’s So Personal On The Silver Screen

A reader writes:

I hope you are still curating the long-running thread on suicide as you did for abortion. Around the web, I still see the abortion thread linked to, as recently as yesterday, when a commenter over at Pajiba did so regarding the trailer for a new documentary, After Tiller, about America’s late-term abortion providers.

I look forward to the film: the trailer states there are now only four doctors in the country who can perform late-term abortions. Four. “I can’t retire; there aren’t enough of us.” Keep in mind that it seems likely (film unseen, of course) that the four people so described are the only four of whom the public is aware, because they operate in clinics whose services are publicly known. This makes me angry, since whatever legal restrictions anti-abortion people enact, the same conditions won’t apply to rich women, who have access to money, privacy, and lawyers – power unimaginable for poor women. What was the birthrate for Congressional wives before Roe v. Wade? Before contraception? What does “preferential option for the poor” mean anymore?

The reason to continue the suicide thread is the same as for abortion: until we hear the stories behind life-and-death decisions, we base our judgments on abstracts and absolutes, missing the human part of the equation. We need these points of view.

Agreed, and we will continue both threads as best we can. From what Katie Walsh says in her review of After Tiller (a clip seen above), the film seems very much in the spirit of our anonymous “It’s So Personal” series:

[The film’s] heartbreaking stories [of those considering late-term abortion] are sensitively captured by [filmmakers Lana Wilson and Martha Shane], who chose not to show any of the patients’ faces to cloak their identities but also as a stylistic choice, and as they tell their stories in counseling sessions, the camera rests on a shoe fidgeting, or a hand clutching a tissue. Just focusing on their voices and stories is such a powerful thing within the film, listening to the women as the doctors and counselors listen to them. This gentle approach is what “After Tiller” does so well in its treatment of this tough material.

The doctors and nurses themselves are gentle and compassionate, and Wilson and Shane are wise to mirror that in their filmmaking. While the sight of anti-abortion protestors may inspire a certain reaction from an audience member depending on their personal beliefs, there is nothing in the film’s presentation to vilify or ridicule them. They are presented as part of the reality and struggles, the obstacles that these doctors must face in order to do their work, but the film also allows their voices to be heard in this debate.

The full trailer:

Jul 30, 2013 @ 4:44pm

It’s So Personal: Monoamniotic Twins

Dustin Rowles, who wrote the Pajiba post mentioned by a reader in our earlier post on After Tiller, recently went through a harrowing ordeal with his wife after doctors determined she was pregnant with monoamniotic twins:

The doctor told us that if we went forward with the pregnancy, if one fetus died in utero it would probably leave the other baby severely brain damaged. He said if that happened, we could make a plan to go to one of two states in the country — Florida or Colorado — that still have individual Doctors providing late-term abortions. Kansas used to be an option, we were told, but the Doctor who conducted procedures to terminate the pregnancies of severely brain damaged and deformed babies with no chance of a decent quality of life had been shot and killed. Ain’t that America.

We decided to terminate. It was the most difficult, most agonizing decision either my wife or I had ever made. We both are pro-choice, but when it comes to abortion, in the typical scenario, you decide to terminate a pregnancy you don’t want. We had made a decision to terminate the potential lives of two babies that we did want. That we wanted very badly. However, we felt that the risks were too high and that it would be irresponsible to risk not only our future but that of our son, who was four. We didn’t want him to have to grow up in a home with parents that had to devote all their emotional and financial resources to profoundly disabled siblings. More than that, we didn’t want to bring beings into the world that would have to spend a lifetime suffering, who might have a severely low quality of life.

The thing is, there was no one from whom we could solicit advice. There’s not even a lot of anecdotal information with which to work when you’re pregnant with monoamniotic twins. There is one major support page online, but there is a lot of self-selection in posters, and most of the people who write have had a positive outcome that has either confirmed or bolstered their religious convictions. Many of the posts make clear that termination was never an option — and/or should not be an option — for others in this situation, which we totally disagreed with. What we were aiming to do was make the right choice for us — a rational, logical decision that an objective couple in our situation would make. We were relatively young. We could still have more children. We could wait a few months or a couple of years and try again.

The more we thought about it, the more sense it made to end the pregnancy. We felt — and we still feel — that this is a fundamentally personal decision, and we were shocked at the politicization of this medical issue, when of course nobody else can tell you what is right for your family. It is a decision that has the potential to fundamentally alter the entire course of your life, and until you are personally faced with something like this, there is no way to know how you are going to react or what the right course of action will be.

Rowles and his wife subsequently changed their minds and opted to continue the pregnancy. Mercifully, though their twin girls were born premature, they both beat the odds and survived with no ill effects. You can read the rest of his story here.

Aug 5, 2013 @ 2:37pm

It’s So Personal On The Silver Screen, Ctd

A reader writes:

As a patient of one of the doctors in After Tiller, I can, most unfortunately, assure you and the reader who doubts the scarcity of late-term care in this country: No, wealthy women don’t get to have these procedures in hospitals. Very few people do, and in those cases, it is almost always the case that the woman is in imminent danger of dying because of her pregnancy. Even then it’s a maybe, not a certainty. Because of legal restrictions or simply lack of comprehensive doctor training in this procedure, many women have to be flown ASAP to late-term abortion doctors to have their lives saved when they, say, experience organ failure from pregnancy-related illness.

When I learned of my need for a late-term abortion, the doctors at my hospital – my HUGE, important, very legitimate hospital for high-risk pregnancies in Boston, the city of medicine and liberalism – did not know whether or not I had ANY options for termination. They turned up one clinic – only one in the entire country – and it was nowhere near here. I think that two of the doctors here might have been able to help me (not all four do the procedure as late as I needed it), but nobody in Boston could. So even if there may be a few more reputable doctors who practice late-term abortion, none materialized out of all of Boston when I needed help. Money and good insurance will not save you. Know that these few doctors serve most cases of late-term abortion in the Americas (including Canada) and even Europe.

I have heard of other doctors who practice late-term procedures coming out of the woodwork lately – unscrupulous doctors who operate illegally or in sketchy legal territory and take unacceptable risks with their patients’ well-being – doctors like the convicted Kermit Gosnell, and another operating out of New Jersey. They have terrible safety records, but they provide cheaper care.

Despite there being no hidden network of upper-class abortion providers for the latest-term procedures, money is a huge issue for access anyway. You hear “abortion clinic” and you think “cheap!”, but the doctors in this film preform a serious four-day procedure at a place that has to constantly stave off frivolous lawsuits filed constantly by political “pro life” activists, defend its right to exist in its legislature over and over and over again, and has to provide comprehensive protection from “pro life” terrorist attacks. The doctors are not getting rich off of this, but the procedure is not cheap. Mine cost $25,000. Because of the medical urgency of the situation, I had only one business day to come up with the cash or the credit – a business day I had to spend on an airplane to reach my destination. I incurred an additional $3,000 in travel expenses. My “Cadillac” insurance plan, which claims to cover this procedure, has only deemed a small fraction of it worthy of reimbursement. I can choose to sue or eat the difference. A woman without established and supportive connections (or a huge personal fortune) would have been out of luck.

I hope that this perspective is a little bit illuminating. My need for a third-trimester abortion was a deep personal tragedy. I lost a baby I loved and wanted, and she lost her shot at life – but our other options were just so much worse. To endure this situation, to travel this journey of loss … it added layers of pain and fear that I couldn’t stay home in my local care network.

My heart is full of gratitude for the doctors in this film. One of them saved my life and my baby’s life, too. But I will never get over that sense of fleeing into the night to find the care that was appropriate for my needs. It hurts me to hear the scarcity of care dismissed by those who erroneously assume that there are other doors open for care. The scary truth is this: I am an educated woman of reasonable means. When I needed my care, I could only find one door. I was lucky it was the door of one of these four capable and reputable doctors. In my desperation, I could easily have fallen into much more dangerous hands.