The life and struggle of baby Dave Vicente was recently chronicled in the six-part TV docuseries, The Frontline for Hope. The Vicentes traveled to St. Louis Children’s Hospital from North Carolina after several other medical centers refused to accept Dave’s case because it was too complicated, and Dave’s chance of surviving beyond a few days was slim. Dave made the Cardiac Intensive Care Unit at St. Louis Children’s home for more than eight months, until he eventually passed away. Dr. Allan Doctor is the director of critical care medicine at St. Louis Children’s Hospital. He was with baby Dave the night he died. In his own words, Dr. Doctor reflects on how the medical team copes with the powerful and often conflicting emotions that can arise from exceptional cases like Dave’s.
The Vicentes had a baby who had a combination of defects, each of which is life-threatening. There was a serious congenital heart defect, in which only one half of the heart developed, and a serious lung defect caused by a congenital diaphragmatic hernia, where the lungs didn’t develop properly. These two problems in combination have always been considered lethal. For this reason the center where he was born said they wouldn’t attempt to repair either of the problems and that Dave should go into hospice-type care. The Vicentes contacted 3 or 4 other places and were not offered an opportunity.
Here, when Dr. Warner and Dr. Eghtesady were asked if they would attempt to correct the defects, they were willing to try. They’re both outstanding surgeons. And we have a great support team. But they did not plan an innovative operation or any operation that anyone else couldn’t do. The difference in approach is simply that they seriously considered the possibility that it might succeed.
The first operative sequences were planned. Dave’s circulation was stabilized with a combination of procedures in the cardiac cath lab and operating room. He recovered from that. Then the diaphragm was repaired. He was recovering from that, too.
What happened afterwards, to be honest, was that Dave developed an additional problem that we did not anticipate. We eventually learned that the root-cause of this combination of defects in the lung and the heart was a genetic problem called Noonan’s syndrome. Noonan’s syndrome is associated with Myelodysplastic syndrome, which is a disease that occurs in the bone marrow and immune system, very much like leukemia. Dave’s immunity was very abnormal and he went through bouts and bouts of severe inflammation; his body behaved as if there was a severe infection, though there were no germs provoking this response. As a consequence of this, there was substantial strain on the heart – you get a high fever and the metabolic rate is increased to many times normal. Dave’s heart and lungs, both already marginally functioning, couldn’t handle this added strain.
Unfortunately, when we first saw Dave, there was no indication that this problem would develop . Dave had to live long enough for it to become manifest. By taking his case, he lived almost eight months. Over time, we recognized this third very serious problem, which made recovery from the combined heart and lung defects truly futile. On one hand, we gave the Vicentes an opportunity, but unfortunately it wasn’t in the cards. We did learn quite a bit by taking this case on and giving it a try. I think the Vicentes are happy they were able to give their child a chance at life.
I have mixed feelings about this, to be honest, because I worry. We’re responsible. I feel like I answer first to Dave. And I answer to his parents. And I answer to the medical team, and to my conscience.
If the truth is that the opportunity for recovery was not possible, did we do Dave any real favors? That’s a hard question to answer. On the one hand, Dave had a chance to live eight months, to experience the love of his parents, but he paid a price because there was a fair bit of suffering during that time. At some point, if we had become unable to manage his distress – at that point it would no longer really be serving Dave. We never really got that far with Dave, thankfully. This is a concern that we are always attuned to. His parents had the chance to experience him alive and to offer him love and see its receipt. There were times when they were able to interact in a very meaningful way. That was very satisfying. On the other hand, that was only a portion of the time Dave was here. The nurses who were caring for him had to bear the burden of seeing him suffer with some pain and distress.
Attempting to correct this combination of problems was not something we had previously attempted.. I’d say Dave’s case was uniquely challenging because we didn’t really know the likelihood of success. When we made the additional diagnoses of Noonan’s and Myelodysplastic syndromes, it became more clear that Dave was not going to survive. That became difficult explaining to the family who had become very committed to trying everything, and it became an extended process to reprioritize our goals (from focusing upon life-extension to focusing upon life-quality). We needed to think more about limiting the suffering that he might go through and consider that we shouldn’t do everything we possibly could to make him live another week. They were starting to accept that. As we were working through this decision, he became so unstable that we couldn’t keep him alive anymore.
We have to deal with death. We have to accept that it’s a necessary part of what we do in the ICU and we try to fight it.
Dave was a child who needed an opportunity at life and we gave him that opportunity. As it turns out, we learned a full recovery wasn’t feasible and that he was going to die in infancy. While it is sad, we still gave the family something. I don’t feel like we failed. We actually accomplished something and I feel like we did something with meaning. Because the family will remember how our medical team worked to give Dave a chance at life. Even if they didn’t get the outcome they’d wished, they know their child had a chance. If we ensure that an inevitable death is peaceful, we’ve also accomplished something. Unfortunately, most of us are destined to die alone and in pain. Dave passed away without pain and with his parents present. If we’re able to accomplish that, we’ve also done something worth doing.
In caring for Dave, I was able to learn quite a bit about the people with whom I work. I saw them make hard choices. I saw Dr. Warner and Dr. Eghtesady make hard choices. Only by doing things that are not routine do you begin to understand how people make decisions and I gained significant regard for everyone involved with this case.
Sometimes, an extraordinarily challenging problem brings out sterling quality in people. I think this case in particular brought out a lot of the qualities that I admire, and I had a chance to see that in action. It also helped us push a lot of boundaries of care here, so now the boundaries are a little further out, and that will be better for the next kid.
It also taught us some humility – we thought we knew what we were dealing with with Dave and in truth, we didn’t. Dave taught us a lot of medicine.
I feel very close with the nurses and therapists and other doctors who all want to work here. I see people doing truly remarkable things. I see the patient care techs, pharmacy aids, X-ray technicians going above and beyond, often doing something that’s courageous to help take care of these kids. It’s a chance to work on humility. It’s a struggle because it’s tempting to imagine that as a physician in charge, that you have a lot of power. When I see these other people on the team do something that salvages a case – not the surgeon or the intensivist – it keeps me grounded. To be perfectly honest, in moments of crisis, that happens frequently.
Hope is what gets everybody to work. It brings the children here. The hope that we can do something that hasn’t been done before is why I wanted to come here in the first place. It’s not enough to work somewhere where you are doing routine cardiac surgery or whatever your specialty is. Because professionals want the opportunity to do something novel and to make a difference you want to be at a place where you’re working with people who think like that. If you ask me what kind of hope drew me here and gets me excited about working at this place, it’s the hope that we can change the status quo for kids like Dave.