The statistic

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”

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3 thoughts on “The statistic

  1. I have been reading your blog for awhile and never was able to comment on my phone or reading on the fly, but when i read your post that you had Mabel and that she died, i cried. I am so terribly sorry for your loss and the horrible mostly downs and sometimes ups that come along with it. You are an amazing mom! Just wanted to let you know that i think of you daily in Ohio and sending you a great big hug.

  2. Meghan, I apologize in advance that this is going to be so long. I think in part I am writing this to help myself heal a bit – I find it helpful to share my story too. For me, it reminds me that it was real and that it happened because otherwise I have no real proof except a few US pictures and an ache in my heart. The pain of your journey will lessen but the hole in your heart will never fully heal…

    I came across your blog via a FB friend – I can’t remember who now but I grew up in Cheshire so probably someone I went to HS with who still lives around there. First and foremost, I am so sorry for your and your husbands loss. Mabel was absolutely precious in the pictures you shared and I have shed several tears for you, your husband, your family, and for her as I have read this. Your story hits particularly close to home for me as my husband and I have shared a part of your journey – though yours has been more difficult by many, many miles.

    My husband and I also tried for what seemed like forever to get pregnant (9ish months). I remember watching women around me getting pregnant without any issue or without even trying! My cousins unexpected, but very wanted, pregnancy as we were in the midst of not getting pregnant felt like a particularly low blow from the baby gods 😉 I was angry, jealous, sad, frustrated…and worried that we would never get our chance. When I found out I was pregnant at the end of July 2013 I was over the moon. I had the easiest 1st trimester imaginable and was looking forward to telling everyone. We had our 13 wk US and the baby was measuring a bit small, so they adjusted our dates and had us come back the following week…in hindsight, this should have been our first clue something was not right. The second 13 wk US was normal so we started telling family and friends before my lab work came back, assuming that would be normal also – how wrong we were.

    I got the call on a Wednesday that my blood work had come back and the labs were so low that they were not even measurable. They had never seen this and made the assumption that it was a lab error, so we were going to follow up with an 18 wk US and lab draw. I am also in the medical field and something about that didn’t feel right so I started doing all sorts of research and found that this happening in a genetically normal fetus can result in a viable baby but that there are possibly complications to maternal and fetal health and development (what we kept missing in all that was that everything said “genetically normal”…somehow we never considered this baby was not genetically normal since the nuchal translucency was fine). LONG story short, before I could call the office back to set up a meeting they called me to say they had looked more into and we needed to come meet with their genetic counselor/high risk OB. She started talking about triploidy (not sure how familiar you are with this – 3 chromosomes across the board instead of just at select markers) and suggested that we do an amnio to find out for sure. If it was a triploid pregnancy there are significant risks to mom if carried to term and the condition is 100% fatal to baby within a short time after birth. The week we had to wait for that amnio was torturous. During the procedure the OB told us the baby was still measuring small and she was fairly certain had a cerebellar malformation…we knew even before getting our preliminary results back 2 days later – the phone call from my OB at 5:30 on a Friday told me before she even did. Our baby had triploidy. Oh and in the middle of this two week journey from lab results to amnio results, my cousin had her perfect (and remember unexpected) little girl. It was VERY hard to be happy for her as we were going through all this.

    Due to the health risks to me and the fatal nature of the condition for us the only choice was to terminate…and while my mind understood and agreed with this decision my heart was very heavy. The procedure was the following Wednesday, Oct 31, 2013. The next few months were an odd time for me – similar to you I felt odd going out and enjoying things (and had a hard time doing so) since in my mind I was supposed to be pregnant and not able to enjoy that glass of wine or whatever. The emotions would hit at weird times and sometimes I just wanted to shout at people who were complaining about mundane things… I just wanted to be like do you have any idea what I just went through?? Whatever you are complaining about is meaningless compared to my experience. Luckily, we had not gotten around to making it completely public that I was pregnant before we got the bad news, so not everyone in our lives were aware – which sometimes made a situation easier, and sometimes harder to hide that I was struggling with this huge weight. People who did know mostly felt awkward about it all and dealt with my by just not mentioning it. Sometimes a good thing, other times I wanted our pain to be acknowledged.

    The ache of this whole experience does not go away, even as I sit here writing this a year and a half later, my heart hurts and tears come to my eyes. As I read about your journey and your emotions I see many of my own. We were told this happens in an estimated 1% of all pregnancies, although that number is likely very off since most terminate on their own so you would never know what was the issue. We were the “lucky” ones that kept carrying. We were told that it was not a condition that we would be any increased risk for in future pregnancies – our risk would be the same as anyone else’s. This past Oct 10, 2014 we welcomed the most perfect and amazing little girl, Ariana, into the world. I was pregnant with her when my original due date passed, and that day was a bit emotional. The year anniversary of the day we lost our first baby came and that was easier than I thought it would be since I was preoccupied with a newborn, but did think about the other baby that day.

    I think this particular post of yours hit so hard to home because I am also “the statistic”. I am the 1%. I was terrified of that 1% when we got pregnant with Ariana, and I will be terrified of it when we decide to have our future children. I still have that babies US pictures and every now and then will take a look at them. I see babies that are the same age that this little guy/girl would have been and wonder what they would have been like. Since we did not carry to term, and lost the baby before I ever felt any movement or looked/felt pregnant, I feel like we lost what should have been. I have no idea the heartache that you are going through having met and cuddled with Mabel, because you really lost your little girl. My heart aches for you as you go through this time. You will never, ever forget – but it will be easier to deal with as time moves forward. Even after you feel more like yourself again, the emotions will come back at odd times. For me its happens when the song Every Storm by Gary Allen comes on the radio. This song made me bawl every time I heard it when it first came out because we were in the midst of the storm. I printed out the lyrics and posted them in my office as a reminder to myself that everything bad will eventually pass. Now it makes me tear up and smile a little – while the emotions still gnaw at my heart its not so painful now. That storm ran out of rain and our lives have moved forward. I will NEVER forget, it will never not hurt – it just hurts less. My thoughts are with you.

    • Kate, thank you for sharing your story. Your story made me cry too- there is something so heartbreaking about losing a child to something so biological because things don’t form right. And to have to wait months, thinking things are fine, to even discover that they are not. Hearing about the difficult decisions others had to make and how the survived the grief afterwards is comforting.

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