|an EKG test|
I saw a news story yesterday about a wonderful teenager, Ben Breedlove. He had a rare congenital heart defect, hypertrophic cardiomyopathy, which means that part of his heart was thicker than it should be to the point where it was difficult for it to beat. Ben passed away this week after suffering a heart attack. His story hit home for me since we starting going down the path of cardiomyopathy with Ronan prior to his heart surgery.
Ben Breedlove's Story
The thickness of one of Ronan's ventricles was indicative of a more serious case of pulmonic stenosis than what Ronan was presenting. Our cardiologist, Dr. A, told us the day Ronan was born that the thickness indicated that the pressure gradient in Ronan's heart would increase to the point of needing a procedure. After birth, his gradient was about a 3, anything above a 5 means the individual needs an angioplasty or surgery. Dr. A felt that the thickness was what he normally saw in patients with a gradient of 5 or 6, but that Ronan's gradient remained low because the various holes that everyone is born with had not closed up yet. After Ronan hit 5 days in the NICU and his pressure had not changed, Dr. A felt Ronan could go home and be monitored. The next big milestone would be the pulmonic pressures normalizing, and this could produce the pressure change that would warrant intervention.
Once Ronan hit about 4 - 5 weeks with no change to his pressure gradient, his cardio case became more "interesting". Dr. A presented Ronan's case to a number of cardiologists, all of whom felt that Ronan's heart thickness and pressure gradients did not match up. Eventually, Dr. A consulted with a cardiologist whose specialty was cardiomyopathy. This would have made Ronan's case far more serious, and we anxiously waited for his opinion. The cardiomyopathy cardiologist felt that Ronan's heart thickness still could be a result of his stenosis, and that we should just continue to wait and monitor.
I never thought I would be relieved at the thought of my baby having open heart surgery, but the day that Dr. A performed an echocardiogram and we saw Ronan's pressure gradient at a level 5.5, we were all relieved. When Dr. A told us that Ronan's case was no longer unusual, and his heart thickness and stenosis were matched, this elephant in the room disappeared. Paul and I were both frightened after the little research we did into pediatric cardiomyopathy; some of these children end up with heart transplants. This was the point where we actually decided not to do research, not to do internet searches, and to just wait and see what happened with Ronan.
As Ronan recovers from his open heart surgery to repair his pulmonary valve, his heart thickness should start to go back to normal. In follow ups, we've seen the ventricle thickness decrease. It is still not normal yet, but it could take some time to get to that point. But for the moment, we can push a fear of cardiomyopathy to the bottom of our list of worries, and I can just remain a mild heart momma.