World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

***

In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

Mabel

 

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To those expecting a baby with Down Syndrome

Today is World Down Syndrome Day.  3/21 –> Trisomy 21.  Brilliant.  And today I speak to those expecting a baby with Down Syndrome.

To those with a prenatal diagnosis of Down Syndrome, please don’t despair.  I was in your shoes six months ago and made the choice to say yes- yes to having a baby with Down Syndrome and whatever that diagnosis may bring.  I know what it is like to worry about what that means.  I know what it is like to worry about each ultrasound and what news it may tell.  I know what it is like to worry about stillbirth and loss.  I understand the concern that comes with the idea of raising a special needs child. I know how it feels to wonder how your child will look and how she will be treated.  I know how it feels to comprehend that the baby you are carrying might take years to potty train and may never move out of the house.  I know the challenge of looking for day care able to accommodate a special needs child.  I understand the concern that comes with the idea of raising a medically complicated child.  I know how hard it is to navigate the new world of therapists, pediatrics and specialists, finding ones familiar with Down Syndrome.  I know how it feels to wonder if your child will need to be delivered prematurely due to poor growth, will have bowel surgery as a newborn or need open heart surgery as an infant.  I know what it is like to consider giving up your career and life how you pictured to care for your baby.  These are all normal.  And the good news is, not all these things will come true.  Some might, but most are surmountable.  Most babies with Down Syndrome live.

You will find yourself in a new community, surrounded by people who already have children with Down Syndrome and are eager to tell you how wonderful it is.  They will support you in your worries and fears, your adjustment struggles and gladly give advice on how to navigate it all.  This is club you may have never wanted to join, but you will likely be glad you did.

I tell you this because I am not so lucky to face these struggles.  My baby was one of those with Down Syndrome who did not live.  What I wouldn’t give to still be facing those worries, fears and stresses.  With all that could be unexpected with a baby, I have learned that Down Syndrome is a welcome, livable one.  You can have a warm body to hold, smiles to capture and personalities to get to know.  I was ready to give up my career and lifestyle to have these opportunities.  As I sit here with empty arms, I want you know that some people yearn for a child with Down Syndrome and might even be jealous of your situation.

We never know what the fate of our children will have.  There are many unpredictable diseases and struggles our children may face- autism, cancer, mental illness – at least Down Syndrome is a known one; we know what the possible complications and struggles may be.  I don’t pretend to know other’s circumstances and I don’t pretend that having a child with Down Syndrome, with or without medical issues, is an easy journey.  Raising a child with Down Syndrome is a journey full of worry and wonder, of fear and joy, of anger and acceptance.  This I know: Down Syndrome is not a death sentence.  I chose to commit myself to raising a child with these issues but I was not fortunate enough to take that child home.  I consider someone lucky if she goes home with a baby with Down Syndrome.  May you be so lucky.