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

 

Advertisements

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

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 weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

Sometimes knowledge is power and sometimes knowledge is pain

I have a friend who is a doctor and she shares snippets of her daily life- the trials and tribulations of a resident physician, her patients and the lessons about life she learns. Some stories are beautiful and uplifting. Some make me cry. Some make me cringe. All are insightful.

Recently she wrote of a meeting of providers- discussing their patients’ cases and one of them, an oncologist was distracted because he had recently learned of his mother’s breast cancer. He had trouble focusing on the meeting because he knew better than anyone what the diagnosis meant for his mother and his family.

“Because sometimes knowledge is power and sometimes knowledge is pain.”

This was me, my entire pregnancy with Mabel. I had a week before my first ultrasound where I assumed everything would be okay. Until there was no heartbeat and we thought I had a blighted ovum. Seeing a heartbeat a week later, confirmed a viable pregnancy but I spent the rest of the first trimester knowing what it felt like to miscarry and worried I’d be feeling that way again. Though I told my family I was pregnant before my genetic testing, I asked them not to share the news until we got the results, because even though I had no risk factors, I knew it could still happen to me. When I learned Mabel had Down Syndrome, I decided to accept the diagnosis, but it wasn’t simply recognizing I’d be raising a child with special needs. It was also recognizing that I might not be- I was all too familiar with the risk of miscarriage and stillbirth with the diagnosis (ironically, I wasn’t thinking about neonatal loss). When we were told her kidneys weren’t working, she had no fluid and if she were even to be born alive, her lungs would likely be too small to sustain her life, I had some hope, because what mother doesn’t? But I also knew. I’ve told people myself when there is no fluid at early gestation that their baby will die. I knew.

Yes, sometimes knowledge is power. I was able to research and make my own educated and informed decisions about my body and my baby. But knowledge was also pain for me. I never enjoyed my pregnancy like I should have, like I wished I did; it was too tainted with worry.

I’m sure those of you out there who have had a pregnancy after loss also know that knowledge is pain. There are some of you who may have learned that lesson with your first pregnancy, like me.

Is knowledge power? Is knowledge pain? What is your experience?

I’m strong because….

I am strong because…

I went to work everyday with what I thought was an empty sac.

I chose to do genetic testing knowing I would likely continue the pregnancy regardless of the results.

I let the doctors push a needle into my uterus, near my developing baby, to get a CVS sample to see what exactly was going on with my baby.

I told people my baby had Down Syndrome in the same breath I told them I was pregnant.

Everyday I worried about miscarriage and stillbirth but still got out of bed.

I went to conferences, talked to experienced mothers and sought resources for the baby who would likely struggle inside me.

I knew enough to take someone with me to each ultrasound, just in case we got bad news.

I accepted the news that my baby had clubbed feet as good news.

I made a baby registry with all sorts of Down Syndrome specific things so I would be prepared.

When I was diagnosed with low fluid and my baby’s kidneys weren’t working and her lungs probably wouldn’t either, I still got out of bed.

I helped people end unwanted pregnancies of possibly healthy babies while I so badly wanted to continue my wanted pregnancy of an unhealthy baby.

I never once considered learning the gender of our baby before birth despite the numerous ultrasounds, because I wanted a good surprise for once.

I smiled at the woman who could not stop wishing me a healthy baby when she saw my large belly in the third trimester.

I decided a classical c-section would not be good for my health and future family.

I decided to prevent a very preterm birth because I didn’t think our baby could survive her medical complications and prematurity.

I cancelled my baby shower.

I went to work with pregnant woman, myself pregnant with a that baby might die any moment.

I listened to their complaints without judgement, even though they were having a healthy baby.

I still talked to my sister who was pregnant with a healthy baby.

I didn’t complain about legs in my ribs or difficulty sleeping.

I exercised all through pregnancy, even when hospitalized.

I was admitted to the hospital and lived for two weeks attached to a monitor, carefully watching every beat of my baby’s heart.

I was ok with two more weeks of hospital time when suggested we wait even longer for delivery to increase my baby’s chance of survival.

I asked my family to try to be there for her birth because we were unsure how much time we’d have with her.

I ordered a baby outfit and blanket so my baby would have something to wear in case she died.

I labored.

I got an epidural, knowing I’d be sad about it later, but also knowing it would help me survive emotionally.

I pushed my baby out in three contractions.

I fell in love with my baby even though I thought I would lose her.

I listened to the doctor who told us her lungs were not responding.

I called all my family to tell them our baby was going to die.

When the doctor said it was time to take her off the vent, I said ok.

I held my baby as she took her last breaths.

I bathed a dead baby instead of a live one.

I held her lifeless body as lovingly as I would if she lived.

I show her pictures even if it will make others uncomfortable.

I visit her grave .

I still get out of bed every day.

 

I’m strong and I know some of you are too.  Tell me, why are you strong?