Four words you never want to hear: “Your child needs surgery.” We’ve heard these words too many times. In fact this is the now the fourth time we’ve been told this in the last few years in regards to Beckham’s heart and lungs.
Beckham had another heart catheterization at Stanford last Tuesday. His pressures have shot back up yet again and his heart is working too hard to compensate. The pulmonary arteries that go to the lower lobes of each of Beckham’s lungs have severe stenosis (narrowing). Back in February they put two stents in to try and keep these arteries open. The cath doctor ballooned open those stents last week. The problem is we’ve been traveling back to Stanford about every 6 months for interventional caths with ballooning, which seems to provide some relief initially, but after a few months the arteries narrow again and pressures shoot back up. If you can imagine a garden hose shooting out water and you kink a section of the hose. Pressure builds up, there’s excess back flow, and other parts of the hose might have to expand to compensate. It’s similar to what happens with Beckham’s pulmonary arteries. The blood flow going to his lungs cannot successfully travel when there are narrowed or “kinked” sections. There is backflow back to his heart. His heart has to work harder to compensate and in turn becomes larger. There are more complex pieces to the puzzle but that is the gist of what we have been dealing with for over a year.
Initially the cath doctor told us that she did not think surgery was going to be an option right now. She did not believe that Dr. Hanley would want to put Beckham through another grueling surgery for this. We figured that we would continue on our regular cath and ballooning schedule in hopes that eventually things would stabilize. Beckham was presented in the surgical conference on Wednesday morning and we were anxious to hear the results before discharge. Although to be honest we didn’t expect any difference in the plan. Well to our surprise our cath doctor came right to our hospital room after the conference to tell us that surgery was back on the table. She was just as surprised as we were and wanted to personally give us a heads up since she had just told us the day before not to expect surgery.
Dr. Hanley is a miracle worker and has saved countless lives. Most complex CHD babies born with MAPCA’s have a unifocalization, aka pulmonary artery reconstruction, then hopefully a complete intra-cardiac repair, and follow up with a post-op cath one year later to make sure things are growing and looking good. Ideally things would look acceptable at that time and the next surgery wouldn’t be for another 3-5 years for a conduit replacement. Well this has been Beckham’s 3rd cath since his last open heart surgery. Which is abnormal even for your “average” complex MAPCA kiddo, if there is such a thing. Beckham has not followed that ideal timeline. Not even close. But let me also say that I know many other kiddos who haven’t either. That’s one of the hardest parts with complex CHD and MAPCA’s. It’s unpredictable. Even kids with the exact same congenital heart defect can have vastly different medical journeys. So even though Dr. Hanley is a miracle worker, he can only do so much with the anatomy he is given. And he can’t control how the body reacts and grows, or lack there of.
Dr. Hanley wants to do things a little differently this time. Due to Beckham’s traumatic surgical history and post-op recoveries he wants to do a staged repair. This means breaking the repair into two separate surgeries, tackling one side at a time. He also wants to go in through Beckham’s side, called a thoracotomy, instead of re-opening his chest for the 4th and 5th time in a 3 year period. Re-opening the sternum and working through all of the fibrous scar tissue that has built up is extremely time consuming and a delicate process. By choosing a thoracotomy they will be opening fresh tissue which will also allow for a quicker procedure. I mean just about anything is quicker than a 21+ hour surgery… But by choosing to just do one side only during each staged surgery will keep the surgery time down. All of this will mean hopefully less time on by-pass for Beckham’s heart and ideally a smoother recovery. Fingers crossed Beckham won’t need to be on ECMO life support and that his body will heal quicker. Going in through Beckham’s side will also give Dr. Hanley more direct access to patch and repair the pulmonary artery. The narrowing is out distally meaning it’s closer to his lungs than his heart.
They will be doing stage one of surgery on Beckham’s right side first because that is the side with the worst stenosis. Then (assuming his recovery isn’t anything crazy) we would go back approximately 6 months later for stage two on the left side. We are currently working with the team at Stanford to narrow down a surgical date. Right now we are looking at surgery as soon as January or February, but I will update when we have a concrete date.
In addition to surgery the team is also looking into starting Beckham on 1-2 new medications. He has been on the borderline of receiving the dreaded diagnosis of Pulmonary Hypertension. Essentially his pressures are extreme enough that some would say he absolutely has PH but it has not technically been added to his long exhaustive diagnosis list. The medications they are considering would ideally help dilate the arteries and relieve some of the pressure from his heart. There is not a lot of data using these medications in pediatrics. From what I’ve heard of others experiences it seems like it works mildly for some and does nothing for others. So we don’t take this decision to add these meds lightly. However it seems like it’s probably worth a try to see if it can help Beckham. We are still waiting to hear what the final recommendation is from Stanford. There are many people who have to weigh in on these decisions including our surgeon and the pulmonary hypertension team.
I know this is a long update with a lot of medical information but we wanted to be as transparent as possible. It’s important to me to help others understand what is going on inside of Beckham’s perfectly imperfect heart. So many people see his rosy cheeks and infectious smile and don’t realize the daily battle he is fighting on the inside. As a family we are still processing all of this information ourselves. Surgery is the last thing we want to put Beckham through, yet alone two sets of surgeries. But we trust his team and want to do whatever is best for him. We will also have to figure out how to navigate all of this with a baby brother in tow and a dad/husband in medical school. We’ve been so busy since we received all of the news that I don’t think I’ve fully processed everything. It’s still sinking in. But sharing this news with the world definitely makes it more real. And I already know the second we have a surgical date scheduled that I will have my typical break down. It’s all a part of this life as a heart family. Thankfully we have the strongest heart warrior we know to get us through all of this.