‘The genetic counselor acted as if it was a terrible, awful condition. The specialist suggested termination. ‘We will have this baby, no matter what.’: Mom urges ‘Down Syndrome is something to be celebrated’

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“Riley’s story starts April 23, 2019. We had opted to get the 3-month scan and NIPT test with our third pregnancy just for the extra ultrasound. The tech brought in the Maternal Fetal Medicine Doctor, and he pointed out there was an increased nuchal translucency measurement, which was common with different trisomy’s.

He suggested we have the materNit21 test to see which specific trisomy we were at high risk for. We opted for it. I got the call a few days later; the baby was at high risk for trisomy 21, otherwise known as Down Syndrome. I’m not going to lie, it took my breath away. I cried for what I thought I was losing and I cried because of the way the news was delivered from the genetic counselor – as if it was a terrible, awful condition.

Then of course I had to go back to Maternal Fetal Medicine, where the specialist suggested I get an amniocentesis or a CVS in case I would like to be certain and had plans to terminate, which was obviously not an option for us. We said, ‘We will have this baby, no matter what.’

It hurt me they would even suggest something. I just couldn’t fathom their reasoning. Why? I have a teenage nephew with Down syndrome. What if my sister-in-law had aborted him? HOW was he not worthy of life? HOW was my baby not worthy of life?

The rest of my pregnancy was very stressful, to say the least. I had terrible morning sickness, high blood pressure, and a high-risk pregnancy. I had two fetal echocardiograms, which were inconclusive.

Fast forward to October 10, 2019, (my 35th Birthday) the day I had an ultrasound. The OB told me I had an umbilical vein varix and I had to be induced ASAP because I was at risk for stillbirth. October 11, 2019, at 12:15 a.m., Miss Riley came into this world! She was just perfection.

newborn baby photographed wearing a knitted outfit asleep on top of a white fuzzy blanket
Courtesy of Jennifer McCormick

She cried right away, but then her color started to become gray, so they took her and gave her oxygen. We had a week stay in the NICU and also a diagnosis of an AVSD heart defect, which would need surgery. They also told me Riley had a few traits of Trisomy 21. I told them I was aware there was a high chance early in my pregnancy and it didn’t matter. She was the most perfect baby in the world.

Baby girl with Down Syndrome sitting in the couch wearing a red and with dress with fringes and a big red bow on her head
Courtesy of Jennifer McCormick

February 2020, Riley’s heart got the repair it needed. It had been a bumpy road, but since then we are starting to see the real Riley. She is a force to be reckoned with. I truly believe the world will know her name. Down Syndrome, heart disease, and being born a month early have NOT held Riley back.

She is meeting her milestones and wants to be a big kid like her big brother and big sister! It is truly amazing to see how strong Riley is, despite her low muscle tone she is rocking PT, doing baby signs, and getting into everything as any toddler should! I do know we will have some challenges ahead, but I also do know Riley is a rockstar and she will overcome them all!

Down syndrome baby with big pink bow on her head sticking out tongue at the hospital after heart surgery
Courtesy of Jennifer McCormick
Down Syndrome baby celebrating with her arms up in the air sitting at the doctor's office
Courtesy of Jennifer McCormick

Down Syndrome isn’t something to be feared, it is something to be celebrated! Riley has opened up a whole new world for our family! Riley’s smile can warm even the coldest heart, her determination is nothing short of extraordinary. Her extra chromosome makes her who she is! She IS Riley…she HAS Down Syndrome.”

baby girl with down syndrome wearing red boots and denim jacket smiling big while sitting on the carpet in the living room
Courtesy of Jennifer McCormick
Special needs mom hugging down syndrome daughter wearing red Christmas outfit and smiling
Courtesy of Jennifer McCormick
siblings sitting on a towel at the beach holding newborn baby and sister with down syndrome
Courtesy of Jennifer McCormick

This story was submitted to Love What Matters by Jennifer McCormick. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos 

Read more powerful perspective from special needs mom: 

‘As I sat alone in the NICU, postpartum body aching, one thought rose to the top of my mind: ‘You are exactly who our family needs.’: Mom navigates son’s Down syndrome diagnosis, multiple heart defects

‘I’ve never had this.’ I asked, ‘What do you mean?,’ thinking she was referring to the pasta. ‘A meal with a family.’: Family adopt 2 daughters with Down syndrome, ‘Every child deserves a safe, stable family’

‘It’s a boy!’ The doctor placed our sweet baby on my chest, tears of joy falling. But instantly, I knew.’: Mom vows ‘I’m going to celebrate’ son with Down syndrome

‘Poor thing.’ It’s not something to avoid or pull your children away from at the playground. It’s pure, unfiltered joy.’: Special needs mom advocates for Down Syndrome acceptance

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