In 2011, when I was approximately 20-23 weeks pregnant with my first child, Mason, it was discovered that he had hypoplastic left heart syndrome (HLHS). We never thought about terminating the pregnancy and always felt like God chose us for a reason to have this special child. Although, I was in disbelief at first, I just wanted to know what the next step would be and if there was a way to fix his heart.
I was sent to see Dr. Neill Videlefsky who reviewed Mason’s scans and requested to send them to Dr. Wayne Tworetzky in Boston to see if Mason was a candidate for an experimental procedure called balloon valvuloplasty. In a whirlwind, we found ourselves on a plane to Boston the same night we were notified that Mason qualified.
On our first day, we met with multiple teams that would take care of Mason and I during the procedure, which ended up being a success, and at first, Mason showed increased function in the left side of his heart. Unfortunately, as he grew, the growth of the left ventricle began to slow and it was determined that Mason would require all three surgeries; the Norwood, the Glenn, and the Fontan. We returned to Children’s Healthcare of Atlanta where Mason had his Norwood surgery at 5 days old and ended up needing a feeding tube due to failure to thrive. What should have been a simple insertion of this weighted feeding tube resulted in an emergency surgery when he was just 7 days old to repair a tear (perforation) in his stomach. After this, Mason was able to tolerate his feedings and we were released to go home after 3 weeks.
Mason never became completely stable after the Norwood procedure, and we found ourselves in and out of the hospital. Though in the moment it was hard to believe, Dr. Videlefsky would tell us that after his next surgery, we would find some sense of normalcy. One day, after an ambulance ride to the hospital, the Glenn surgery ended up happening sooner that we thought, which also ended up including a procedure to repair his coarctation. Always one to keep us on our toes, Mason went home on oxygen and another feeding tube because his diaphragm and vocal cords were partially paralyzed. Thankfully, after a month or so, Mason was weaned off of both and able to thrive. That normalcy Dr. Videlefsky talked to us about finally set in.
Four and a half years later, it was time for Mason to get his third surgery, the Fontan. Once again, Mason took the road less traveled, suffering two watershed strokes, one on each side of his brain. He came home from this surgery not being able to hold his head up, sit, walk or control his arms, hands, or legs. Mason needed physical and occupational therapy. The first day, Ms. Cheryl, his physical therapist, helped him stand and take a few steps. Mason never really looked back. Today, Mason is still in therapy and making progress. He recently served as a ring bearer in his sister’s wedding, and we take time out each year to support the congenital heart walk.
My mom and twin sister have been my biggest support system emotionally. They have been there for every smile, tear, fear and meltdown along the way. They have learned CPR, how to work feeding pumps and learned to recognize signs in Mason that they should be concerned about. Not all families are as lucky as I have been. For those of you just starting on your CHD journey, know that it is both a scary and blessed road that will feel like a roller coaster full of ups, downs, twists, turns and sudden stops. Some moments you may not be able to catch your breath, but it can also be the most rewarding path you can ever be on. Be your child’s advocate and learn what their normal is. Enjoy each moment.
Don’t think too far ahead, but still remember to dream.