According to the Pediatric Congenital Heart Association, now Conquering CHD, 1 in every 100 infants is born with a congenital heart defect. February is Congenital Heart Defect Awareness Month. Although I was a NICU nurse for eight years, I was unaware of this until my son was born in November 2018. I’ll be honest with you; for the first time since my son was born, I can think about CHD Awareness Month without anxiety. In 2019 I was still processing my son’s diagnosis, and a crippling fear filled me thinking of his upcoming open-heart surgery. Last year, I was feeling overwhelmed by twice-weekly therapy appointments with my 1-year-old. This year will be different.
As a 33-weeker myself, I grew up knowing I wanted to be a NICU nurse. However, I never imagined I would become a NICU parent. After an almost uneventful pregnancy, my stubborn son Gavin was born at 37 weeks via C-section because he presented frank breech, and I experienced high blood pressure.
I often joke that Gavin wanted to see where Mommy worked because after 5 minutes of his birth, a friend and co-worker transported him to “MY” NICU, Baylor Scott and White All Saints in Fort Worth, Texas. He needed bubble C-PAP to help him breathe comfortably. As a NICU nurse, I have welcomed thousands of moms into our NICU for the first time, but it was surreal being the one in the wheelchair washing my hands for 3 minutes to see my baby. Although I do that before every shift, at the time, it felt like the longest 3 minutes of my life. Having my son in the NICU felt comfortable but also so strange at the same time.
I struggled to turn off my “nurse brain” and find my “mom brain.” I had a hard time not thinking of the worst-case scenario or performing nursing tasks while visiting. Thankfully, my co-workers saw my struggle and were amazingly supportive. After three days on oxygen, Gavin still showed no improvement. Our neonatologist decided to order an echocardiogram to see if his heart was the problem. At this point, our world turned crazy. The echo showed that Gavin was born with several heart defects. He needed open-heart surgery to repair them and would have to be transferred to our local children’s hospital.
Leaving the comfort of my hospital and transferring to Cook Children’s Medical Center was challenging but it allowed me to become “just a mom”. In this new environment, I turned my focus to my son’s diagnosis and learned how to care for him. After about three weeks, we took Gavin home to grow until he was big enough to have surgery at seven months old.
Our hospital time was pretty short compared to most, but it changed me as a mom and a nurse. First, I learned never to underestimate my son. He overcame every obstacle placed in front of him and is stronger than I could have ever imagined. He handled doctors’ appointments, surgeries, and therapy with giggles and smiles, flirting with every nurse he met.
Secondly, I learned the NICU journey does not end at discharge but continues with every appointment afterward. I now know the value of finding a support system to lean on for the hard days. This lesson is the one I most often share with my fellow NICU moms.
My heart races each time a doctor orders an echo for a baby. However, I take solace in knowing that if needed, I can offer a unique comfort to the parents that only a few people can.
CHD Awareness Month 2021 is different from previous years for me. Instead of fear and anxiety, my heart is filled with hope. I know that my story and Gavin’s is just beginning. If he touches only one person with his strength, or if I help just one momma feel a little less alone, then it is all worth it.
I am okay with being 1 out of 100 heart mommas.
For more information about congenital heart defects, visit https://mendedhearts.org/about-us/about-mended-little-hearts/