University of Utah Health/Primary Children’s Hospital doctor, Adil Husain talks about saving the life of a little boy who was battling cancer and heart disease.
Interview conducted by Ivanhoe Broadcast News in 2023.
Tell me about children who have problems with their heart valves.
Husain: People would be surprised to know that congenital heart disease is the number one congenital defect that patients are born with. About one percent of all births have some form of congenital heart disease. Not all of them need surgery, but it’s not an insignificant challenge in terms of kids that are born unhealthy within the U.S.
What can happen to these kids?
Husain: The spectrum’s wide. Some of them can be born where their oxygenation is not quite right, meaning their blood is too blue. In other situations, components of their heart might not form where they need a medicine to be infused in them immediately after birth so that certain blood vessels can stay open so blood can get to where it needs to get to. In some other instances, it may be something as simple as what people call a hole in the heart, which at various degrees of life may or may not need to be closed.
What are options for these kids? Is it usually surgery right away?
Husain: No. I would say about 35 percent of the heart operations we perform at Primary Children’s Hospital are done on neonates, meaning those operations have to happen within the first week or so of life, but not an insignificant number of kids can be followed. There’s usually another subset of kids that need an operation somewhere between three and six months of life and others that can wait even longer.
We’re talking about the Ross procedures. So what is that for?
Husain: The Ross procedure is a real novel operative approach for kids that are born with aortic valve disease. It’s important to know that kids that have aortic valve disease, which is the valve that opens and closes to let blood actually leave the heart and go out to the body, can at times be treated even with a catheter or other interventions prior to surgery. But the Ross procedure’s what we’ve been employing here at Primary Children’s when children actually need their valve replaced.
Is this is pretty common or not common? I got almost common for adults.
Husain: The adult population is quite different. Historically when it comes to a patient needing an aortic valve replacement, there’s all sorts of options, metal valves, tissue valves that are man made, and even a lot of advancements in terms of getting a value placed through a catheter rather than open heart surgery. Those options may be they’re in children but the options are not as long-lasting in children. The Ross procedure, whether it’d be in children, adolescents, or even young adults, is gaining favor in terms of being the best operative approach for these patients.
Explain the Ross procedure.
Husain: The Ross procedure is unique because you’re actually using another valve inside of your lung valve or pulmonary valve, and you’re harvesting it from the heart muscle and tissue and you’re using that as your new aortic valve.
Don’t you need that valve?
Husain: Now, people say, what you going to do with the pulmonary valve that you’ve taken? We can take a donated pulmonary valve from someone who’s passed away and actually insert it into the pulmonary position. If you try to do that same thing in terms of the donated valve from somebody who’s passed away in the aortic position, historically those valves don’t last long at all, but in the pulmonary position they do, and we take advantage of that fact. There’s really no foreign body in terms of metal or any stents or any struts in terms of these valves, and that’s what’s its most beneficial advantage.
Because it’s coming from that child, does it just grow with the child? And it’s also not anything foreign that you’re putting in the body?
Husain: Correct. In terms of longevity, meaning freedom from another operation, the Ross procedure for these young patients gives them the longest time period in-between operations.
Which is?
Husain: Fifteen to 20 years, is what we’d like to tell patients, and oftentimes that reoperation is on that pulmonary valve, not the new aortic valve. The new valve wasn’t designed to be an aortic valve. Sometimes we see that valve dilate or have some degree of dysfunction. But overall, these valves do grow with the patient and they have extreme longevity.
How does that with them as they’re growing up? Can they not participate? Can they participate?
Husain: That’s one of the benefits of the Ross procedure. With other valves, oftentimes you need to be on a blood thinner with metal valves, blood thinner for life. With Ross procedure, the medications you require are very minimal. We do like to follow blood pressure pretty closely in these kids. But overall, we want them to return to a life without congenital heart disease to be able to do things they like to do and really to have a high quality of life.
Does this cure this congenital heart disease?
Adil Husain: Cure is a word that I think sometimes people overuse. Unfortunately, I don’t know that there’s a cure once you’ve replaced an aortic valve because it’s not your own valve. I think the Ross procedure gets you about as close to a cure as you have in terms of all the other options that are out there.
Does this new valve, and their new heart function, as well as other kids that didn’t have had it?
Husain: If we’re along with our pediatric cardiology colleagues able to catch these kids at a time where they’re ventricle, the heart muscle hasn’t been diseased or damaged because of that abnormal aortic valve. Our hopes are that their heart can essentially be normal in regards to how it functions moving forward.
Is this a procedure that you would perform on a newborn?
Husain: We have performed it on a newborn. The risks and the outcomes are a bit more concerning on newborns. But in instances where we don’t have any other options, it really is the only option for a valve replacement in a newborn.
What’s the normal timeframe you would normally do this procedure on a kid like at two years old?
Husain: We’ve done them as young as two or three days of life. Now we’ve expanded where we’re helping some of our adult colleagues around the community do them in patients that are in their early to mid 20s.
Would this ever replace this for adults? Would this be a way that they would go for adults?
Husain: As with anything in life, even with health care, there are some people who really believe in one approach versus another. Some experts around the country that exclusively perform the Ross procedure have done it in patients that are 30 or even 40 years old. I would say the older patients, 60 to 70-year-old patients. The other options with catheter based interventions and whatnot are likely a better approach in that subset of patients.
Tell me a little bit about Creedon.
Husain: Creedon, like many children here in the heart center, has provided us with a lot of joy and a family that’s been fantastic to work with. Creedon is now five years old. He was born with many medical issues. He was born with the body aortic valve that one of our pediatric cardiology colleagues actually used through a catheter in a balloon to open up at one day of life. He was able to grow and do well with that valve. Unfortunately, he also had Stage 4 neuroblastoma. He had a really bad cancer that he had to deal with. He had a resection done. He eventually went through a bone marrow transplant. While all of those things were happening, he gained some fluid around his heart, and that aortic valve became much more dysfunctional, and so we were caught in a challenging predicament because he wasn’t healthy enough for an open heart operation. About a month after fortunately, he went into remission. We did a Ross procedure on him, and fortunately, he’s done really well with it.
How many years has he had that?
Husain: He had the Ross procedure done in March of last year.
Is his heart as healthy as it’s ever been?
Husain: His heart has been really healthy. From what we hear regarding his parents and his family, he’s playing with his siblings and acting as if he’s catching up on time. That’s the best news that we can get, that a child can really function in life, enjoy life, create problems and mischief, but really not act as if he or she has congenital heart disease.
What’s the best part about this Ross procedure for you?
Husain: I think a couple of things. I think first it’s really a novel therapy for kids with aortic valve disease. Second, it’s a procedure and a technique that myself and my surgical partners, as well as the entire heart center made a commitment to about three years ago, and our Ross program is taken off since then. I would say we’re one of the highest volume centers doing a Ross procedure in the pediatric population. Primary Children’s and the University of Utah are getting recognized for that in regards to national presentations and folks around the country really being excited about what we’ve accomplished with this operation.
END OF INTERVIEW
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