Corben was due for his one year check up and Hunter hadn't been seen in 4 months. You would think that I would be more nervous about Hunter's news since he was the one who has had open heart surgery, but no. Hunter's path, while rockier, is pretty well known. We don't know specific times but he will need multiple open heart surgeries in his lifetime, with at least 2 more before he's an adult. Barring any freak things happening to his valves, we should be able to plan ahead with surgeries (all will be at CHLA..... I will not allow anyone at PCH to touch him, or Corben, if needed)
But Corben is the unknown. Currently he has a bicuspid aortic valve that could cause problems. We don't know what he will need. He hadn't been seen in a year, he grows like a weed, and we have the knowledge of how bad it can be.... so there was no telling what news we would get. He doesn't have any symptoms that worry me of anything..... just my mind that never shuts down.
Thankfully, it was good news all around. I will start with Corben.
Last year at age 1, his aortic valve was not leaking at all and also had no stenosis (narrowing). His heart was functioning perfectly normal with his defective valve. The only small issue he had was that his aorta was slightly enlarged. It wasn't something the doctor was concerned about but it was a red flag that needed to be watched. The next step, if the aorta significantly enlarged more, was to talk about medication. Sure, I don't want him on meds, but it's not a catheter or surgical intervention.
Thankfully, because of his growth, the aorta is now not enlarged AT ALL. He still shows no stenosis or regurgitation. Basically he is heart healthy with a bum shaped valve. The "book" says the better the child does with this defect in the first couple of years is a good indication of what the future holds. Since he has made it to 2 years old with no issues whatsoever, the likelihood of him needing ANY intervention within his first 3 decades of life is rather slim. Dr. S also seems to think that the chances are good that he may not need anything in his lifetime. Wow. Of course, things can change and he will always be monitored but for now things look great. His next follow up will be in a year. Dr. S said that he doesn't want him to get an echo first even, that he will listen to him and be able to hear if there is a major change. If he hears something he is concerned about then we will get an ultrasound that day.
Corben won't have any major limitations on activity. He can't be a power weight lifter and shouldn't be doing any sort of max weight exertion lifting. Contact sports aren't out of the question for him, but also aren't encouraged. He should have a very normal life.
Now onto Hunter.
Just a quick review on the physiology of his heart. Because of how deformed the aortic valve he was born with was, it needed to be replaced. He had a Ross Procedure that took his own pulmonary valve and put it in the aortic position. This, because it is native tissue, will grow with his heart. This valve potentially could last 20-25+ years (before it could start leaking or narrowing) Then, he had a donor valve put in his pulmonary position. This will not grow with his heart. At some point he will either outgrow it, or most likely it will begin leaking or narrowing. At that point we will plan for surgery to replace it. The reason this surgery was done rather than just replacing the aortic valve that was sick is because aortic valve replacement surgery is much more invasive than a pulmonary replacement surgery. Yes, he will still need to be put on bypass and the heart be drained for it, so it's not a walk in the park. But it is less invasive than the aortic. Plus the body can tolerate leaking or narrowing on the pulmonary side much more than the aortic.... thus extending time before needing surgery again. Whew ok.... now onto his follow-up.
As of now neither of his valves are leaking or narrowing. Both are functioning wonderfully and doing their jobs. There is nothing to "watch" or be aware of. He was on a blood thinning dose of baby aspirin daily that Dr S stopped. They kept him on it 6 months post op just to help blood flow through the donor valve. His team all was ok with it being dc'ed.
Right now the only medication Hunter is on is his Zantac for reflux twice a day. We are letting him outgrow his dose though so probably by 10-12 months that will be dc'ed as well. He will be med free!!!!
The "plan" is most likely surgery to replace his pulmonary valve at around age 6/7. This isn't a guarantee though. It could cause problems and need to be replaced next year or could wait until he is a little older than 6/7. It is all wait and see. He goes again in 9 months!!!!
For now, we have two healthy little boys! For the first time, Dr S didn't give me the "let him be a normal baby" speech. Must mean he thinks I'm doing better! I truly feel like I am. When he had a cold a couple of weeks ago I went back into paranoid worry zone, but he fought it off and got through his first cold just fine.
We are so relieved that we got such good news. We are blessed :)
My good boys! Corben got a lollipop to distract him during his EKG. Hunter is eating a plastic motorcycle.... :)
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