The forms to fill out were minimal with her birth she was a textbook baby, mine a textbook pregnancy. Our eldest daughter Ariel was 18 months old when Elyse was born. It’s just something you have to get through. I read what I could, but ultimately, nothing can fully prepare you for your child’s hospital experience. I’m thankful we knew about the need for immediate surgery beforehand because I’m a mom who likes to prepare. She would die without surgery, no food able to pass through. In the case of Down syndrome, the two most common health concerns involve the heart and the gastro-intestinal system.Įlyse was born with duodenal atresia-an atresia meaning a blockage in the duodenum-a section of the small intestine. When a fetus is diagnosed with a chromosomal difference doctors consult their own forms and checklists. I wondered: aren’t all newborns disabled and dependent on their mothers? Then, in the NICU, after Elyse was born, I was handed a from with a checkbox and the word disabled. The high-risk obstetrician arrived, test results in hand: positive. With my husband Dan by my side, we waited for the results of my ultrasound and bloodwork. After my twenty-week ultrasound, which showed a soft-marker, or indication, for Down syndrome, I sat in the genetics clinic at McMaster Children’s Hospital filling out the same form for the second time that day with my family’s medical history. In the hospital, there were plenty of them. I used the questions as a guide, but the existence of the form itself prompted memories of my hospital experience.įorms. They asked me to share my family’s story by answering a few questions posted in a word document on their site. Two wonderful moms, Jess and Kayla, have created a space, Beyond the Beads, for families to share their hospital experiences and to come together and support one another. And if you’re reading this, you’ve come to a good place.
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