Friday, July 6, 2012

Let Your Feelings Show - Part 2

Geeking Out:  Food For Thought

I think it is important to spread my story about termination for medical reasons. The numbers who TMFR staggering; though not as high as you might think. The data point that is most often parroted in the poor prenatal diagnosis community is that 92% of women who have a prenatal diagnosis of Down Syndrome terminate.  The study where the 92% termination rate came from was a review study conducted by Mansfield et al. of ten studies on Down syndrome published between 1980 and 1998. Only three of these studies were from the United States and comprised only 77 of the 5035 patients (1.5%). The US is a country where much of the population has access to high quality medical care, money,  quality education and good early interventions we also have a growing population of fervent Christians. Studying this population and their termination rates may show differences from other countries for these or other reasons. Natoli et al published a review of 24 studies, which were of three types- population, hospital and anomaly based.
The weighted mean termination rate was 67% (range: 61%–93%) among seven population-based studies, 85% (range: 60%–90%) among nine hospital-based studies, and 50% (range: 0%–100%) among eight anomaly-based studies. Evidence suggests that termination rates have decreased in recent years. (Natoil)
Still high. Still very high. I think it is also important to remember that this is for DS, which can have relatively few life threatening issues. I think (though I can't say for certain) that had my child had DS and not T18 and was lucky enough to be free of cardiac and other life threats I would have carried to term. That response may be different if actually faced with the situation, faced with a life where we could only be a one income household. I don't think I would ever have another child, and that is a hell of a sacrifice. It is certainly an issue I would struggle with much more than letting Blue Sunday free; that was a no-brainer. The crux of this geeky rant is: If 67-85% (the official estimate from the paper) of mothers of kids with DS terminate, even now, how much higher is it for T18, T13, anceophaly or the host of other 90%+ fatal issues? 
This brings me to my point:

Coming Out of the TMFR Closet

It is important to spread my story about termination for medical reasons.

As I mentioned here, my boss and a few others knew we had bad quad results since I had to take time off for the amnio. I was already 18 weeks along so most people knew I was pregnant. When we got the news that it was T18, I was actually at work. After calling my husband I went into my boss's office and told her that it was bad news and I would need to be out. The implication was obvious that I would be terminating, and I was too stunned to realize that this wasn't always a supported action in light of horrible fetal prognosis. Thankfully, where I'm from and in the industry I work, more people are very pro-choice. Unbelievably, my boss started crying, hugged me (neither are really "her style") and says that this happened to one of her kids as well. This was an amazing moment for a few reasons- TFMR is a small club, to work for another TFMR mom is really unlikely. This was also a great moment because she still referred to her baby as one of her kids. She has 2 (beautiful) living children, with a 4.5 year gap between them. I imagine that's where her lost baby should be.

The other night, we had a company softball game (beers all around). My best friend here at work was expecting a little boy any day now (he's the daddy, and his son was born and is healthy). Conversation naturally went back to his wife's pregnancy and his little son at home. One of the other woman in the office started talking about her kids (also 2 boys- 22 months apart just like my friend). I mentioned that I always wanted 4 kids- 2 close in age break and then 2 more- but that I planned the first 2 by 30. Then the dreaded "How many do you have" question. None living- that didn't work out for us". Eventually I mentioned that the baby had T18 and I only made it to 20 weeks. Then I said something to the effect of- "I couldn't imagine having a child who would have such a hard time". Then she remembered, I could see the memory bubble up in her mind in the expression of her eyes.  I had sent out an all company e-mail saying I was no longer pregnant and the baby had T18- no other information. And she started talking about her special needs son. He has a learning and sensory disorder and goes to a special school. One of the kids there has T18. She said the child's mother is younger than she (she might be 40) and that T18 mother looks 60.  She said it is such a hard road. She sometimes is down about her own son and then sees this poor woman and thinks how good she has it.  But that sometimes she wishes that she knew what her son would go through before he was born.. trails off and says "Not that it matters but I think you did the right thing." It was such a relief to have someone KNOW that I TFMRed and to have that validated- by a special needs mom, no less. Parents of kids with SN sometimes seem to view my choice as an assault on their kids and as judgement on their choice to continue with their pregnancy. I have never spoken to anyone with these views in person, only on-line, so I can't say if this is a common sentiment or not, but I do know that it happens. The crux of the argument is that we chose different and divergent paths, but that we do so for ourselves and our children. 

Hugs to all of you with a child with SN- here on earth or in the great beyond. This is not easy, but I really and truly think we all made the decision we felt was best- and there should be no shame in that.

Shout, shout, let it all out, these are the things I can do without
Come on, I'm talking to you, come on
Shout, shout, let it all out, these are the things I can do without 
Tears For Fears, Shout 

Natoli JL, Ackerman DL, McDermott S, Edwards JG. Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995-2011). Prenat Diagn. 2012 Feb;32(2):142-53. doi: 10.1002/pd.2910.

1 comment:

  1. Two things that are funny about the timing of my reading of this post. The other day I thought I wanted to tell you: you did the right thing. Because whenever I heard that I felt a little better about that horrible, gut-wrenching decision.
    And just today I thought how my mom sat with me on diagnosis day and said "Your life matters too." We think only of our kids in such a situation. It's up to our parents to look out for us as their kids. What life do we have as parents when our child spends half his life in the hospital? The T18 mom in your post is proof, not that anyone thinks it will be easy. It does matter. Your life matters too.