“I’m sorry, but there is something wrong with your baby’s heart,” were the words we heard when I was 28 weeks pregnant with our baby, Madden. After trying so hard to get pregnant and to start our family, it was difficult to hear. We were angry, frustrated and sad. We were also confused and didn’t know what having a baby with congenital heart defects would entail.
When Madden was born in March 2017, our new reality began. This was no longer a story we were being told about a baby we hadn’t met, it was our son’s heart journey. The first thing we learned along the way was that anything can change at any time with a CHD baby.
The day after he was born, Madden was transferred to CHOA. His CHD diagnosis changed significantly upon his arrival. We learned that Madden has Tetralogy of Fallot with presence of MAPCAS (major aortopulmonary collateral arteries). This includes a hole in the heart (VSD) and Pulmonary Atresia.
At first, we were told that Madden would need an operation very soon and that he would not survive without IVs to provide medications until then. His open heart surgery was scheduled for when he was 6 days old. In the best way we could, we prepared ourselves for what was to come. But change was coming – the morning of the scheduled surgery at the doctor’s meeting, they determined that Madden’s rare, extra heart vessels were providing his lungs with enough blood and oxygen. The doctors cancelled Madden’s surgery and performed his first cath lab procedure. With the surgery delayed for another time, we were free to go home a few days later!
Since being home, Madden has gotten to live life the way we never thought a baby with CHD could. You would never know he was battling such major heart defects. He has traveled to the beach, the aquarium, had a lake day out on a boat and has met other heart warriors. He’s blowing the weight and height charts out of the water, thriving when we were told he may not, and is full of life and personality. He has had no major issues pertaining to his heart defects. He lights up a room with his presence – we know he has a bright future ahead of him!
Madden’s repair surgery was rescheduled for his half birthday, but because he was thriving and the hospital was crowded, the surgery was postponed to the following week. Pre-op day came and went and we had another trying moment. Madden’s surgeon was sick and would not be able to perform the surgery as scheduled. Once again, we saw how in the world of CHD anything can change at any given moment. But I’d like to share with others on this path that everything happens for a reason and just because plans change doesn’t mean it’s a bad thing. Because Madden is thriving, we were able to push his new surgery date back and enjoy this fall with our heart warrior. This has been a blessing in disguise!
Sibley has been so wonderful in taking care of not only Madden, but also me and my husband. We see Dr. Brooke Lewis in Canton. She is a blessing who has been with us every step of this journey. It so nice to see her passion for kids like Madden. Nurse Sharon, who does Madden’s EKGs, is another smiling face we enjoy seeing at our visits with Sibley.
Madden’s open heart surgery is now scheduled for the day before Thanksgiving, when he will be 8.5 months old. We are actually looking forward to spending the holiday at CHOA, surrounded by the wonderful care takers of Sibley Heart Center and all the other inspiring heart warriors and their families. It will be a humbling time for our family and a true experience of what the word “thanksgiving” is all about. We are forever grateful for the love, care and encouragement we have been shown by our Sibley family.
Update: Since Laura wrote this story, Madden has had his surgery. But remember, this is a story about unpredictability – Madden’s surgery was delayed from Thanksgiving to after Christmas. And while delayed surgeries are never fun, it did allow Madden to keep growing, which meant that his surgeon was able to give Madden a bigger valve than originally planned. Now, instead of another surgery being required in 3 to 4 years, Madden will be able to wait another 7 to 10 years. Since the surgery, Madden is doing well, but he did have respiratory issues. He and his family spent 2 weeks in the hospital, and now Madden is recovering with a feeding tube and therapy.
Madden has gotten to live life the way we never thought a baby with CHD could.