Aaron the Heart Warrior

Written by Jennifer Obudzinski

While my pregnancy with Aaron was absolutely planned (and surprisingly very smooth), there were a few surprises that came along with his birth.

Aaron was born premature at 36 weeks, weighing just 6 lbs 7 oz. I remember feeling the most incredible high once he had arrived and I was able to finally hold him. We chose not to do genetic testing, or learn the sex, so finding out he was a boy was a wonderful surprise. While there was no initial mention anything was wrong with Aaron, the doctors wanted to keep us for a day or two for observation.

Less than 24 hours later, a pediatrician came in to discuss his concern that Aaron was showing some physical features of Down Syndrome, and he recommended a blood test to confirm. That incredible high immediately turned into the most awful sinking feeling in my chest. The little I knew about Down Syndrome was unfortunately negative. I remember feeling great fear after hearing my son might have it and held on to hope for a negative test.

The next morning, a different pediatrician came in and heard a heart murmur during Aaron’s exam and recommended an echo cardiogram. My husband had gone home to check on the pets and my mother who had flown in the night before, prepared to stay a month to help us settle in with our new baby. I was alone when a doctor rushed in to break the news of his heart condition. She drew a picture on a whiteboard of his heart and all the abnormalities they found. Not only did he have a large hole in his heart (a complete AV canal defect), but his aortic arch was narrowed (coarctation of the aorta), and there was concern he might need an immediate surgery for that. I was told they would have to transfer Aaron two hours downstate to the NICU at Helen DeVos Children’s Hospital in Grand Rapids, MI for further evaluation. Even though the blood test hadn’t come back yet, the doctor said it was highly likely he had Down Syndrome as congenital heart defects are commonly seen.

At that point, I was completely overwhelmed, and couldn’t stop myself from crying and the nurse leaned down to hug me. I called my husband to try to relay the information through tears. He rushed back to the hospital and once he reached my room, he immediately started crying. In the almost ten years we have been together, I had only seen him cry once before. We embraced in disbelief of what was happening to us.

The situation was serious enough that they wanted him to be transported by helicopter though inclement weather prevented this; we watched them load him up in an ambulance and drive away. It all felt like an awful nightmare that I desperately wanted to wake up from. I wanted to go back in time and start over, with a new baby, who didn’t have Down Syndrome or a heart condition. I mourned the loss of the baby I thought I would have, and the life I envisioned as a parent. I felt guilty and responsible for giving my husband a baby with Down Syndrome, because I was 35, and thought I had “old” eggs.

My husband started to make the dreaded phone calls. He told my mom that no, a baby wasn’t coming home from the hospital.

He arranged for his sister to drive us down to Grand Rapids as we were in no shape. He informed his parents and close friends as everyone was naturally curious for photos and updates on our new arrival. Gifts and dinners had started to arrive at our house, but we were not there to enjoy them and had no idea when we would be.

Aaron spent a week in the NICU at DeVos, and fortunately, did not need immediate surgery. It was confirmed that he did have Down Syndrome, at which point, we had already come to accept this reality. His cardiologist prepped us for surgery around 4-6 months of age, with the goal to get him to grow as much as he could before then. He did not breastfeed well and would tire out with a bottle, so he was discharged with a NG tube to assist with his feedings.

The first few months of Aaron’s life, I felt like we were on autopilot. We were going through the motions and consumed by what had to be done to prepare him for surgery. I exclusively pumped every 2-3 hours, and we closely tracked his intake and weight.

We avoided crowded public spaces and limited contact with friends and family to avoid potential illness. He had many doctor appointments and therapy sessions. All the while we still struggled with his diagnosis of Down Syndrome. The hardest part was accepting all the unknowns about his future. How delayed would he be physically and mentally? How much more time and effort would it take to help him reach his milestones or learn to do “simple” things that come naturally to typical kids? Will he ever live independently or go to college? Will he have friends, a significant other, or marry? Will people be unkind to him because he has Down Syndrome? What helped me through this was engaging in support groups and seeing other people’s stories and real-life experiences of people with Down Syndrome. I gradually became less afraid and more excited about Aaron’s future.

On November 22nd, 2021, Aaron underwent open heart surgery to repair his complete AV canal defect. He was barely three months old. Handing our baby over for such an invasive procedure was one of the hardest things I have ever experienced. We had done all the work we could, and now it was out of our control what happened next. The nurses kept us updated with texts and finally a call several hours later stating they were finishing up surgery and Aaron was doing well. I felt a full body wave of relief and immediate happiness that my son was alive, and his heart was finally repaired. Aaron was still sedated, intubated, and hooked up to many wires and monitors when we first got to see him. By the next day, they were able to wean him off sedation, extubate him, and he was eating from a bottle by the evening. He continued to improve daily, and we were able to take him home within a week.

Life "on the other side" was surprisingly challenging at first. After his surgery, the holidays, and my husband returning to work, the adrenaline I had been running on had come down, and I was left feeling lost and thinking “now what?”

I felt anxious, isolated, sometimes bored, sometimes overwhelmed, and guilty for all the negative feelings as Aaron was doing so well. I felt I should have been feeling more grateful and happy, and soaking up every moment with my baby boy. Looking back, I now know I was experiencing symptoms of postpartum depression and anxiety. I sought professional help to manage all those new feelings, and eventually settled into a new normal I was happy with.

Today, we have a healthy and spunky 17-month-old toddler. He is followed closely by his cardiologist and recently graduated to annual checkups.

I initially felt cheated out of the experience of having a typical child that most parents get to have. But after getting to know and love my son and embracing the unexpected joy that he brings to my life I can honestly say now I feel lucky to call myself Aaron’s mom.

I share my story to help others going through anything similar, as I know how helpful it was for me. My heart goes out to all the other parents of these amazing heart warriors, wherever they may be on their journey.

*To connect further with Jennifer and her family, follow her on Instagram @obudzinj