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?