As a Congenital Heart Defect (CHD) Warrior, one learns that no day is promised. While today may be a good day, there is no guarantee that tomorrow will be. Interestingly enough, scripture tells us the same thing.
In the last couple weeks, congenital heart defects/disease got a boost on the awareness side of things when Jimmy Fallon shared about his son Billy being born with tetralogy of fallot (ToF) and having to have surgery. When Fallon went public, he also had Shaun White, famous snowboarder and skateboarder, share how he has survived with ToF. It is amazing and awesome that a Critical Congenital Heart Defect (CCHD) can be corrected so that the patient can live a VERY normal and non-restricted life.
But it isn’t always like that. There are some CHD that have life long complications and the quality of life is limited.
For those that follow my blog and know me, you are aware that I was born with Coarctation of the Aorta (CoA), Bicuspid Aortic Valve (BaV) with Stenosis, and Patent Ductus Arteriosus (PDA). The CoA was repaired by using my subclavian artery to create a flap around the aorta to allow blood flow and the PDA was fixed when I was a week old. The BaV was determined to be stable enough to leave so that I could grow and get stronger. I visited my cardiologist every three months, then every six months, and then once a year… up until this past January.
In January, the left ventricle of my heart (the lower chamber on the left side) showed a significant thickening in the muscle. This is caused by it having to work hard to keep the blood flowing with the BaV. Imagine if you only lifted weights with one arm, that arm would develop a thick muscle. While the muscle getting thick may be good if you are a body builder, it is not good if it is your heart.
This thickening, or stenosis, is not a surprise. When a child hits puberty there is massive growth everywhere! They get taller, their heart grows, everything gets crazy for a minute. In children that are born with CHD and CCHD, the heart has to be watched especially. Any repairs that have already been done and any existing defects can cause issues.
This thickening, or stenosis, is not a surprise. When a child hits puberty there is massive growth everywhere! They get taller, their heart grows, everything gets crazy for a minute. In children that are born with CHD and CCHD, the heart has to be watched especially. Any repairs that have already been done and any existing defects can cause issues.
Fast forward to Tuesday.
After my visit in January, the cardiologist brought us back to 6-month visits. We did not know what to expect this visit. I went to the cardiologist knowing that there were several different scenarios that could play out. Rather than worry, we prayed. God is more than enough.
I was weighed and measured, had my blood pressure checked and o2 stats taken. Nothing odd or scary there except I am 5’7” and 12 years old. Brought up that I tend to stay cold and was told that we needed to pursue the issue with the pediatrician since my circulation and blood flow is good. Then came the echocardiogram.
Dad got to see that my ventricle looks like the sand worm from Dune, only slightly puckered. There is significant stenosis, but it is not notably increased since January. The aortic valve is regurgitating at about the same rate it has been. Pulse is strong in the 70s. Blood Pressure is good for a twelve-year-old. My cardiologist believes we are still going to wait, but she is going to run everything by the cardiac cath lab doctor.
No news is good news for now.
The downside is that I am now on physical restrictions. No running, only recreational swimming with breaks to rest often, no hiking… pretty much everything a twelve-year-old boy does during the summer. Thankfully mom is working on activities that I can do, and I have some friends that are willing to be patient with me.
We go back in November to see how things are. We are praying for the Lord’s healing touch.
