How I Became a Medical Mama

As I held my newborn daughter Paisley for the first time in September of 2023, I knew that my life would be forever changed. I had no idea, however, just how much it would change and how much I would come to love her. Being a mother has been the most rewarding experience of my life, but it has also been the hardest. Through it all, I have felt God’s presence and guidance, and I am grateful for His love and support.

Before Paisley was born, I was aware of the possibility that she might have DiGeorge syndrome, but I tried not to dwell on it. I trusted the doctors, who reassured me that she would be fine. However, as soon as she was born, I knew that something wasn’t right. She didn’t cry like a typical newborn, and her nasal flaring was concerning. The doctors decided to take her to the NICU for observation, as she was at high risk for DiGeorge syndrome.

After a week in the NICU, Paisley was still struggling with feeding, and the doctors decided to run genetic screening tests. The results were devastating: Paisley had DiGeorge syndrome. My husband and I were in shock and overwhelmed with emotions. We had no idea what this meant for our daughter’s future.

The doctor delivered the news harshly and abruptly, which left us feeling helpless and scared. We didn’t know what to do, but I remembered the verse of the day from the day Paisley was born: “For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13. This verse gave me comfort and reminded me that God was with us and would guide us through this difficult time.

We were transferred to the University of Mississippi Medical Center in Jackson, Mississippi, where Paisley received the best possible care in the NICU. We had no idea the extent of her health issues. In Jackson, we learned that Paisley’s VSD (ventricular septal defect) was very large and would require open heart surgery to close. This was devastating to hear as a mother. It broke my heart that my baby would have to go through something so hard. We also learned that Paisley has chronic lung disease. We are still unsure to what extent it is and what caused it. While in Jackson, Paisley was moved to bubble CPAP. It was hard to see her on this at first, but then it grew to be cute on her. She looked like a little ladybug with her special cannula on! Things calmed down for about a month, and my family got into its new normal. Paisley and I were three hours away, and I stayed in the Ronald McDonald house while my husband continued working. He would go without sleep to make sure he was there for us! (Make sure you find a Shelton!!) Things were normal for a while. However, in October, things changed drastically. Paisley began to reflux, choke, and drop her blood oxygen saturation to the 30s! It was so scary to see my sweet baby turn completely blue. The nurses then rushed in and bagged her. That was one of the scariest moments of my life. After this, she continued to do it quite often. The doctors eventually increased her respiratory support to NIV due to high CO2 levels. She began to steadily decline. Cardiology reassured me that she was fine and told me that they would not be able to close her hole until she was six months old. This was heartbreaking news to me. This meant that we would have to live in the hospital three hours away from home for the next six months, away from all family and friends.

Eventually, a friend who had gone through similar circumstances told me that there was no reason they would have to wait until six months. Her son had open heart surgery much sooner at Le Bonheur Children’s Hospital in Memphis, Tennessee. This gave me hope! This hospital was only an hour away from home instead of three hours. So after a long battle with social work, we were transferred to Le Bonheur. Within two days, they said she needed her heart surgery quickly! After many reschedules, within a month she went through open heart surgery. The recovery was long, but this gave Paisley a new breath of life (no pun intended!). Within four weeks of her surgery, we were headed home! However, this did not last long. Within three hours of being home, we were headed straight back. Paisley was throwing up non-stop. She stayed one week, and then we went back home.

After one week, we were headed back to the hospital. This time, it was more serious. Paisley was very sick. As of February 11th, 2024, Paisley is still fighting for her life. She has been intubated for a week. It’s hard as a mom not to see your baby’s precious eyes or hold them in your arms. However, I know God has a plan for Paisley, and she will continue to fight!

It was a challenging time for our family and still is, but we are surrounded by love and support from our community and medical team. The experience of becoming a mother and facing the challenges of DiGeorge syndrome has changed me in ways I never could have imagined, and I am grateful for the journey. God has truly turned this experience around for His glory.