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.

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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

 

To Give and To Get

As a midwife pregnant with a child with Down Syndrome, I am privileged to have both given and received a Down Syndrome diagnosis.

I remember her birth story- it was her first, they were teachers.  She was 36weeks, just a hair shy of term and the baby came fast.  They had declined testing.  After the baby was born into my hands I lay her right up on her mother’s belly, skin to skin, to cheers and tears of delight from her parents.  As the nurse dried the baby off on mom’s belly, she looked at me whispering something.  It took a few beats for me to realize she was saying that the baby looked like “a downs baby.”  Since baby was fine, she stayed on mom for a bit, as the family oohed and aahed over her.  Whose eyes she had, which family chin she inherited.  She was beautiful and the parents loved her unconditionally.  And then we called the pediatricians to check her out- mostly under the guise that she was technically preterm.  I don’t think either of us felt qualified to inform the parents of our suspicion.  The pediatricians did an exam and one came over and started going over the baby’s features.  I remember her stammering and I think she mentioned Down Syndrome somewhere in her talking. It was awkward.  After they left, I sat down with the mom, who just looked confused, in shock.  I had a feeling she didn’t absorb any of it.  She needed more.  I told her in simple words without the medical jargon of single palmar creases and flattened nasal bridge, that they think her baby has Down Syndrome.  She was a little unbelieving at the time- but she heard it.  I remember I was positive- we still talked about who she looked like and how fine she was.  Dad was more immediately accepting of the diagnosis.  Baby had to go to the nursery for a sugar check because mom had gestational diabetes, so dad went with her.  When he came back, I caught him in the hallway.  Mom had had a lot of attention, but dad had been whisked away during those moments- so I stopped him and asked him how he was doing.  He said “So she has Down Syndrome- but she’s still our baby.”  He was just so loving and immediately accepting.

Now that I have been given the same diagnosis, I think I know what went through that mom’s mind in those first moments.  My diagnosis went from “there’s a 1/3 chance of some sort of major birth defect or chromosomal abnormality” based on the first trimester screen to “it’s Down Syndrome” based on the CVS results.  I had a weekend to think about all the possible outcomes- mostly I focused on trisomy 18 (my biggest fear) and Down Syndrome.  I didn’t think this baby was chromosomally normal (is that even the right term?).  I had seen too many results from those first trimester screens to know 1:3 does not bode well.  In a way I was hoping for Down Syndrome, because my baby had a better chance of living.  So when my midwife called my Monday afternoon in the middle of my work day and she said “It’s Down Syndrome,”  I actually was relieved.  I didn’t cry.  I said “ok….ok… Ok.  I can do this.”  My midwife was great.  She was nonjudgmental. She knew me.  We had talked for a long time after the abnormal first trimester screen. So she knew my thoughts and fears about all the possible diagnoses.  She asked what I wanted to do.   I told her I wanted to continue on- my husband and I had talked about it- which at the time was all theoretical, but in my new reality, continuing on was my first instinct.   She went on to talk about all the positive things I would experience.  “Babies with Down Syndrome are born without malice.” I would still experience all the joys of pregnancy.

In comparing my experience with my patient’s, I feel lucky.  I have so much more time to adjust.  I am grieving.  I am seeking information.  I am angry.  I am worried.   But I get to do this on my own time.  When I finally get to meet this baby, I can welcome him/her without feelings of loss.  The birth will be nothing but celebration.  I can’t imagine having to process all this and adjust to a newborn all at the same time.  My tradeoff is the worry I feel through the pregnancy.  I would have had a much more carefree pregnancy if I chose not to do testing.  But my birth will be even more joyful than I could ever have imagined.

I have had the pleasure of attending my patient’s third birth as well as her first.  She chose not to do testing during the pregnancy.  And she was nervous- in a way I thought I understood before, but really understand now.  She just wanted to meet this baby and make sure she was ok.  She wasn’t in full blown labor, but I admitted her and broke her bag of water to get things going.  I could see the relief on her face, when she knew I was going to help her meet her baby that day.  And it was wonderful.  Baby joined us after a fast labor and was just fine.  Her relief holding her in her arms and knowing she was ok, was immense.  I look forward to that feeling with my baby.

I’m writing because…

I’m writing for me- Telling my story as a therapeutic outlet.  As a memoir.  As reflection. As a way to work through my feelings.  I’m writing for my family and friends- to keep them updated about health issues and baby’s well being.  I’m writing for others.  Getting a prenatal diagnosis of Down Syndrome and opting to continue the pregnancy is not the norm. Most people especially with invasive testing, like a CVS or amnio, choose to terminate based on a diagnosis of Down Syndrome.  I am writing to join the small community of us who take that diagnosis and embrace it, to contribute my story so others can feel connected, like I feel connected hearing about how others cope and adjust.