We embrace CHD, but it doesn’t define who we are.
After a very normal pregnancy, my first child, Miguel, came into the world full force, screaming and a whopping eight pounds, four ounces, two weeks early. But after his birth, we didn’t see him for roughly eight hours. It felt like a lifetime. The staff told us Miguel was scheduled for all his newborn screenings and tests, which could take a while. What was supposed to be the happiest day of my life took a drastic turn for the worse; they diagnosed him with congenital heart defects. Miguel had transposition of the great arteries with a ventricular septal defect, atrial septal defect, heterotaxy syndrome, ventricular septal defect, situs inversus and congenital anomaly of aortic right arch. This sounded like a death sentence to me. I was overwhelmed with heartache and confusion – there’s no history of CHD in either my family or my husband’s. I blamed myself, thinking Miguel’s heart condition was because of something I did while pregnant.
All I could do was cry. I was utterly devastated. Miguel was placed in the ICU for three days and surpassed the expectations of the doctors and nurses. His oxygen saturations were in the mid-high 90’s. Once he was released from the NICU, we were sent home with a pulse ox machine to monitor his oxygen levels. Miguel is now three years old and still hasn’t had any corrective procedures. His oxygen levels continue to slowly drop, but today they reside in the mid-high 80’s. He regularly visits with Dr. Brian Cardis at Sibley Heart Center Cardiology in Macon, Georgia. He and his staff have been a God-send to our family, which we our incredibly thankful for!
CHD affects 1 in 100 children. When I was expecting my second child, I assumed they would be a normal, healthy kid. Boy was I wrong! At my 20 week sonogram, we found out we were having another boy, and then we waited to hear from the doctor. Our worst nightmare became a reality when the doctor informed us that they could only see two formed heart chambers instead of four. I felt as though God was punishing me, maybe for things I had done in the past, and that this was his wrath on my life. Having such great, experienced doctors, nurses, staff, and especially our family there for us really helped us to cope with things. For the rest of my pregnancy, I went to a high-risk facility.
Dr. Cardis consulted with me, and we discussed whether to continue the pregnancy. While pregnant, my body was providing my baby with all the heart function and oxygen supply his fragile body needed, but after my son was born, no one could know what his health would be. We discussed the hardship of caring for two children with CHD, both financially and emotionally, but we knew that God had put this obstacle in our path and that He would see us through this trying time in our life. Little did we know then that we were about to embark on the most trying, difficult and rewarding year of our lives.
As soon as I started pushing at the hospital to deliver Dominic, the room began to fill up with doctors and nurses, all waiting to care for my son. It was intense, overwhelming and scary. I had NEVER experienced anything like this before. However, as soon as I saw him, I became very calm. I had a motherly instinct that he was going to be okay. He was rushed to the NICU for testing and was diagnosed with transposition of the great arteries, heterotaxy syndrome, single ventricle defect, cyanosis, situs inversus totalis, pulmonary valve hypoplasia and asplenia. Miguel didn’t get to meet his little brother until almost a week later.
At two months old, Dominic had his first open chest procedure at Egleston. Dr. Shashidharan placed a shunt to keep his oxygen levels stable until his Glenn procedure could take place. His surgery went great; he stayed at Egleston for five days and was much more comfortable after his operation. We were able to enjoy his first Christmas at home with our family.
In March 2017 we headed back to CHOA for his Glenn Procedure. This procedure was much more invasive and intricate and would take up to six hours to complete. We waited together in the pre-op area, overwhelmed, knowing that this could very well be the last time we saw our child alive. Nevertheless, he needed this life-altering procedure. It was very hard for me to hand him over to the medical team. The nurse prayed for me and my son’s operation as I cried and watched them leave for the operating room. Six hours seemed like forever! They would call every hour from the O.R. to let us know how he was doing. His procedure went smoothly, thank God, and we were able to see him in the Cardiac ICU.
After the surgery, Dominic’s vocal chords were paralyzed from the intubation, and he aspirated when we tried to give him a bottle. The doctors explained that this could take days or months to heal, so we had to put him on a nasogastric feeding tube (which goes from the nose to the stomach). We learned how to properly insert the feeding tube and how to feed him using the Kangaroo Pump. After 22 days in the hospital, we were released!
We continued to follow up with Dr. Cardis, our pediatrician and Children’s Physician ENT Group for his vocal cord paralysis. The feeding tube was a real pain. Dominic was roughly seven months old and would religiously pull it out several times a day. It was emotionally and physically exhausting putting his tube in, because if he didn’t want to comply, he would just cough it up and spit it out. In July, we went for a swallow study at Sibley in Macon, and he passed with flying colors. The joy of not having to deal with the feeding tube anymore was elating!
Dominic is now 16 months old and he is the happiest baby! He runs everywhere and is super tough, trying to keep up with Miguel. He eats like there’s no tomorrow and he loves to dance. Miguel is doing well, too. One day, he’ll need surgery, but it’s very intricate, so we’re waiting until it’s absolutely necessary.
My boys are my world, and I couldn’t imagine living a typical, normal life. We embrace CHD, but it doesn’t define who we are.