Wednesday, June 13, 2012

Thinking About Terminating for Medical Reasons - Trisomy 18 etc ?

This One's for the Girls

Who've ever had a broken heart,
Who've wished upon a shooting star,
Martina McBride, This One's for the Girls

This post is for the women who find themselves here as they contemplate terminating for a medical reason. Below is my personal thought process from when I was reaffirming my decision to terminate, suffering in the time between diagnosis/ setting the tx date and the actual procedure. For the record:

1) I am a lapsed Roman Catholic, so I had the guilt thing going on, but I was raised in a pro-choice household. I was taught that God-- he had a capital G when I was learning about him-- cared less about "the rules" and more about doing what you feel is right. Thank god for that.
2) Hub and I had determined before I was even pregnant that we wouldn't continue a pregnancy with a child with a low expected quality of life. We didn't feel it was fair to the child. We would take the doctor's advice on  the quality of life the child was expected to have. Because of this, when I got the 1:5 odds for trisomy 18 I looked it up (though I was told not to) and then knew I would be terminating if this was what our baby had. We were also 1:200ish for DS. If it was DS- which I was hoping it was when we got the bad odds- we likely would have carried to term as long as there were not major complications.

When I made my decision to terminate Blue Sunday it was based on what Blue Sunday would have endured in life. T18 in rare cases is survivable, but it isn't possible to have what I view as a quality life. Most kids who survive birth die before ever getting out of the hospital. They undergo painful surgeries if you can find someone is willing to operate on them, which is not a given. If they live to be more than infants- they usually never speak, walk, play or go to school. That is not a life I would want, so it was not a life I could have my child attempt to lead. I knew we would need heroic interventions: intubations, surgeries, medications. This didn't feel right to us.

I want you to remember that this is my opinion. I read a wonderful piece by Dr Lawernce Fenton, who works in pediatric palliative care (what a saint he must be!) talking about kids with trisomies where he related that parents of T18 and T13 kids say they hate the term "Quality of Life", he goes on to write:

How easy it is to assume we know what a good quality of life is for anyone other than ourselves....We perform ethical analyses assuming we truly understand how to apply beneficence or maleficence to a child with trisomy 18 or 13 or any other disorder in which there may be profound disability. As if the child can tell us what he or she is feeling. But we can do our best to assess and treat pain and discomfort. Smiles and laughter need no score pad. We know what they mean. The advice we give may often be centered around our personal notions about quality of life. (Fenton)
I believe that parents faced with the decision of termination or carrying to term a seriously ill child can and should make the decisions for their child on a whole. Yes, as Dr Fenton points out, a child with a trisomy (or NTD or Amniotic Band Syndrome or Turners or, or, or...) may smile and laugh one day, but they may not ever be able to tell you why. Only you can decide which is the lesser of two evils- living a life where your child cannot do activities of daily living (ADLs), or living one where you will never hold your child alive, much less see them simile and hear them laugh.

It was an easy decision for me, heartbreaking and awful, but I didn't agonize over it. I would never want to be in a situation where I can't tell someone what is bothering me, use a toilet, walk, swim in the ocean or go to school. That was the reality that Blue Sunday would have faced. Truth be told, I didn't want to live without seeing, holding and loving my child, but I had to do that. I deprived myself and not my baby- and I don't regret it.

Because of this, I chose a D&E. It was the best choice for Blue Sunday, hub and me.

I wish that which ever road you choose, you know that neither is "wrong" and you choose the one that gives you peace.

Fenton LJ. 2011. Trisomy 13 and 18 and
quality of life: Treading ‘‘softly’’.
Am J Med Genet Part A 155:1527–1528.

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