Friday, October 14, 2011

{31 for 21} Loss: Fourteen.

This isn't a post to scare new moms.  This is a post to remind us of the babies who aren't physically present in our community, but should be.  

I was grateful to have a very early diagnosis of Down syndrome for Ellie.  I had seven months to emotionally prepare myself for having a child with special needs.

The early diagnosis has a downside, too, a downside of great fear.  The rate of miscarriage and infant loss is higher for babies with Down syndrome than the typical population.  October is also Pregnancy and Infant Loss Awareness Month. 

Despite Ellie's surgeries and birth via emergency c-section, she is a healthy kid.

This is a post sharing what I've learned from moms in the community and what they wish they knew.

In my own experience, I was told that unlike the twelve week point for most pregnancies, I would have a dramatically reduced risk of miscarriage at twenty weeks.  (From 20 percent down to 5 percent.)  Matt and I went out to dinner to celebrate one weekend last fall, because Ellie made it to twenty weeks.  From what I understand, the high risk of loss is associated with the health conditions more common in people with Down syndrome. 

I realized in retrospect how lucky we were to have a prenatal diagnosis.  Ellie's heart was constantly monitored during labor, and is the reason I had an emergency c-section.  In Ellie's case, the monitoring likely made all the difference. 

Kids with Down syndrome are at risk for pulmonary hypertension and persistent pulmonary hypertension of the newborn (PPHN).  The advice I received from one mom was to ask about a worst-case scenario plan and put the plan in writing. The odds are favorable for kids with Down syndrome, but the risks are still higher than the general population.  Sometimes, planning isn't enough. 

One of the saddest things I've learned is how some moms are treated when they lose a child with Down syndrome.  Many infant loss groups welcome individuals who have elected to terminate... including for Trisomy 21 (Down syndrome).  That's not a welcoming environment for a mom who loved her baby with Down syndrome.  Losing a child with Down syndrome isn't "less" than losing any other child. 

So here's the message for today, specifically for those in the Down syndrome community.  The odds are in our favor, but we've all found narrow odds before, because we have kids with Down syndrome.  Hug your baby tighter, and reach out in love to those who don't have their babies here to hug.  Talk to those mommies about their little ones, remember birthdays, and listen.
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  1. What a beautiful and poignant post, Megan. It's amazing really. It's crazy to me that I never knew Cora's risk during my pregnancy was higher since she wasn't yet diagnosed. And I even went on to have a natural home birth. It really makes me all the more grateful for her tenacity and will to hang in there. I will go give her an extra special cuddle right now. Thank you!

  2. Great post, Megan. I know it's difficult to talk about, but it's a heartbreaking part of the Down Syndrome story. We truely thought we were "safe", and were so relieved and happy after Max was born. We felt like we had the rug pulled out from under us when he developed PPHN. We were in shock, stunned and our hearts and lives were shattered into a million pieces when he died 16 days later. Life is so precious, and so fragile. Thanks for the important post.

    Edie, mom to Max

  3. That gave me chills, Megan. A good reminder.

  4. I agree with Megan, I didn't realize the odds and how late in the pregnancy we were in the "clear". We had a miscarriage 6 weeks before Hailey...I always wonder if that baby had DS too.

    I think I need to give Hailey another kiss!

  5. Beautiful post! A part of me is thankful that we didn't know before and that we did go ahead with our plans for a homebirth. Off to give Sweet Pea some extra hugs and kisses for being so strong.

  6. Thank you for writing this! Wonderfully written.

  7. I'm not a Mom and can't ever be due to health conditions, but this post touched me.


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