Dom's Fight with Noonan Syndrome

"At 34 weeks, my third pregnancy took a hard left turn. If I’m being honest, the entire pregnancy wasn’t the easiest. Looking back, there were warning signs. Things just felt off and it was becoming physically hard to do anything. Covid hit and I was so happy to not have to get out of bed to teach 24 kindergarteners in clothes that didn’t fit me with swollen feet busting out of my shoes. Quarantine gave me the rest my body desperately needed but with two toddlers I still had my hands full and things still felt off. At my routine 34 week ultrasound the tech said, “Wow there’s a lot of fluid in there.” Twenty minutes later I was up in L&D and hooked to a heart monitor. Twenty minutes after that, I was being told that my baby was drowning in amniotic fluid and would most likely be born sick.

Two long weeks of daily heart monitoring appointments led to specialists deciding that Dominic needed to be taken out via emergency c-section because the fluid had doubled. So there I was, 36 weeks pregnant, being rolled into a cold, sterile room alone because covid protocols didn’t allow for my husband to be one of the dozen people in the room with me. Dom was immediately rushed upstairs to the NICU to be intubated were I was able to meet him 6 hours later, tubes and all. All the other NICU babies had one assigned nurse. My baby had four. So many machines. So many wires. And the beeps. So many beeps.

Dominic was born with a rare genetic disorder called Noonan Syndrome which set off a domino effect in his little body causing a laundry list of other issues. 103 days, 13 chest tubes, and a surgery later, he came home to meet his older brother and sister. This was by far the hardest thing I’ve been through. His story isn’t easy to tell and relive but it is necessary. Dom’s story is a story of strength, love, and the power of prayer. I will always remember every detail and look back at our NICU stay with gratitude. Dominic will be three years old this May. He has achieved all his milestones and is finally out of the negative on his growth charts. He has a heart of a warrior and doesn’t let anything slow him down. Noonan Syndrome has potential unknown challenges that he could face in the future but we’ve learned to live in the moment, one day at a time. And in this moment in time, Dom is thriving." - NICU Mom, Drina