I wrote this email on 10/30/13. It was from me to another pregnant woman who recently received a prenatal Down Syndrome diagnosis. This is my second email to her. In the first I introduced myself and reached out to make a connection. She responded pleasantly but with a different coping mechanism than me. She was relying on her faith to help heal her baby, who was given the likely diagnosis based on a blood test and ultrasound findings.
“No I do not think you’re crazy! I think when we are given difficult diagnoses, we all look for ways to adjust and cope. If I were religious I would be relying on my faith too. I’m finding my own ways to cope. I’m not sure if [our midwife] told you, I am a midwife myself and so as new things came up by ultrasound I coped by diving into the internet, research, journal articles and medical opinions. Which was both good and bad at first. Sometimes it caused me more worry than I needed. Now I only research the most important things and I’m spending more time making connections with people in similar situations and learning about their experiences. I”ve been on some down syndrome message boards on facebook- which have been nice. And I’m a reader, so I’m reading some books- Bloom By Kelle Hampton and The Shape of the Eye by George Estreich. And I”m a talker- I’m surrounded by medical people at work and so its nice to be able to talk to people who I dont have to explain everything to. It can also be hard because at the same time I’m surrounded by pregnancy and can never really escape thinking about my situation.
I can also understand about ultrasounds- they are not perfect and I find myself hoping for the best too. They saw an enlarged bladder on ultrasound and now its resolved. They also see clubbed feet, but some people have told me that they were told their baby had clubbed feet on ultrasound too but turned out feet were fine at birth. So there is always hope. In the meantime, though I am hopeful, I am also preparing for clubbed feet, until I know more. And I’m throwing myself into preparing about the down syndrome diagnosis, because we had the CVS, so I do know that for certain and it is nice I have something certain I can hold on to- because there is so much unknown.
So, my apologies if this is rambling (i’m a talker). Its just nice to know someone who probably has been having some similar thoughts and struggles. And to see how other people deal with them. I agree, it does take a special person to take news like this and look to a bright future, however we envision it.”
This woman recently had her baby. I know that much. Her baby lived and mine died. I look back on this email and my heart aches for the person I was when I was writing it. I had been scared of the Down Syndrome diagnosis and all it brought, but I was hopeful. I was trying so hard to accept. I look back and think how optimistic I was. I don’t know any more about this woman and her baby- whether the Down Syndrome diagnosis was confirmed at birth, whether her baby had the birth defects they suspected on ultrasound. I’m not sure I want to know- because I’m jealous. And the unfairness of it all really hurts. I had accepted what was given to me as fact and went with it. And my baby dies? And someone who was hoping for a different outcome gets a live baby? I hope this doesn’t sound like I wish something bad to have happened to her baby. It’s the opposite- I’m glad her baby lived and I hope she is doing well. I just wish mine could have too. I feel like I earned it. Or maybe not? I remember feeling lucky compared to her because her baby had suspected heart defects seen on ultrasound and mine didn’t. That hurts to think about now. Was I too arrogant? Would she think that maybe my baby would have lived if only I prayed about her more? Should I have prayed?
These are just questions that run wildly through my head. I know there is no reason to it. I know it’s just numbers- chance. I’m not a statistic, I’m the statistic. 1/625 risk of Down Syndrome. 3% risk of renal defects in children with Down Syndrome. If I did my math right that’s a 1/100,000 chance of this happening. This is the only way I can think to cope. What are the chances of it happening again- 1/100,000. I can’t win the lottery twice, right? I’ve had enough unfairness. Enough.
I’m going to try to remember my own words, written by a more hopeful, optimistic me. Though today it’s hard.
“it does take a special person to take news like this and look to a bright future, however we envision it”