By Nicole Halemeyer
Mommy to Jerry-Wayne
Preemie, 15q13.2q13.3q duplication, Chronic lung disease, & other complex medical diagnosis
Born August 2023
We found out when I was 20 weeks pregnant that Jerry-Wayne had a bilateral cleft lip and palate. I was pushed to do an amniocentesis to see if there was an underlying cause, and that’s when we found out he had a rare chromosomal duplication—15q13.2q13.3. After that, I was constantly asked if I wanted to terminate the pregnancy. I heard this question more times than I should have before I finally switched doctors.
They also saw a small tear in the placenta, but never told me. At 28 weeks, I started hemorrhaging and went to the hospital. I was only 1–2 centimeters dilated, so they sent me home. Every other day, I was back at the hospital bleeding clots, and every time, they sent me home.
At 29 weeks, I knew something was really wrong. I kept saying something wasn’t right. I was in active labor, 4 cm dilated, and still bleeding clots. His water was bulging, and it was clear he wasn’t going to wait much longer.
On our second night in the hospital, he decided he was ready to meet the world. My water broke and in a rush, at 6:29 AM, Jerry-Wayne was born. He couldn’t breathe, and no signs of life were coming from him. He had to be intubated and rushed to the NICU with his dad following.
Jerry-Wayne was intubated for a long time. He went through 10 different trials trying to come off the ventilator, and he fought so hard through every one. He spent 204 long days in the NICU clinging to life.
When we finally got to bring him home, he was welcomed by his older siblings, his grandparents, aunts, uncles—everyone. But not even two weeks later, he was rushed back to the hospital with hyperinsulinism and hypoglycemia.
Since then, he’s been hospitalized multiple times due to lung issues. He still struggles to breathe. There’s a cyst in his throat that keeps growing, and the only treatment option is to drain it—there are no further solutions at this time.
We can’t take him out and show him the world like we want to because he gets sick so easily. And when he does, it becomes life-threatening.
We still have hope. We hope that he gets better, that he can grow stronger, and that he can show the world just how far he can go.
We take things day by day. We cherish every moment. And to anyone else going through something like this—don’t be afraid to ask for help.
