Etymology: from its possession by the heroes of the Persian fairy tale The Three Princes of Serendip
Definition: the faculty or phenomenon of finding valuable or agreeable things not sought for; also : an instance of this
If you’ve ever had occasion to ponder the course of your life, the decisions you’ve made, directions you’ve taken and wondered, how would things be different if I’d done this instead of that? Gone here instead of there? Chosen this person instead of that one? You are not alone. I think it’s something most of us contemplate at one time or another, if not regularly. Sometimes you may even question the paths you’ve chosen.
When I do this, I try not to do it with any regrets. I cannot change the past but I can be conscientious about how I look at it. Could I have made better decisions? Of course. Should I have made different decisions? Maybe. But I am one of those people who chooses to believe that everything happens for a reason. You may not always be fortunate enough to realize or discover these reasons, that doesn’t mean they don’t exist. It’s the “It’s a Wonderful Life” theory - yes I made that up - and I am a firm believer.
I am also very fortunate in that I already know the reason why the paths I took in my life led me to where I was and what I was doing 16 years ago.
Her name, is Tina.
I was working as a Neonatal Nurse Practitioner in the NICU at the Children’s Hospital of Philadelphia (“CHOP” from here on). I had completed my Master’s degree in January of 1994, then moved to Philly from Houston to take the job at CHOP in April. So I was still fairly new to the job and the unit. CHOP was the Mecca for Neonatal Intensive Care at the time, all of the top docs in the country in the field were there. The people who wrote all the textbooks I’d used all through my graduate degree were there. This is where the newest and most extreme envelope-pushing treatments were happening - including liquid ventilation (think “The Abyss”, only using a ventilator). So I took the job there, wanting to learn from these people, wanting to be part of the forefront in the field, and I was scared out of my mind. I knew it was the place to be, but wow, the stress and intensity of that job was mind-blowing. Even having been a neonatal nurse for years before becoming a practitioner hadn’t prepared me for what it was like. There’s a big difference between the stress of caring for the babies in the unit as a nurse vs being responsible for making the decisions about their treatment, particularly in urgent or extreme situations.
I had only been there for about 2 months when I met her. On Monday June 6th, 1994, I arrived at work in the morning to be told I was being assigned as the primary practitioner for a new admission that had come in the day before. Tina was barely 3 days old, the second of twins born at 26 weeks, she weighed 2 lbs 1.5 oz. She and her twin brother were delivered early due to their mom developing severe pre-eclampsia (hypertension) and pulmonary edema (fluid in the lining of the lungs). Her brother was a tiny bit heavier, and contrary to conventional wisdom in neonatology (premature baby boys tend to be sicker in general than premature baby girls), he was also the stronger and healthier of the two. In fact, he never came to our unit, they were able to take care of him at the hospital where they were born. Tina, on the other hand, was very, very sick.
As the crew that had been on over the week-end handed her care over to me, I stood staring at this baby. I had been working in neonatal intensive care for years, really sick babies were not new to me. There was something about Tina, though. Her mom was there, in a wheelchair, still sick herself - she’d been allowed to come stay with Tina for a little but she herself had not even been discharged from the hospital yet. I watched her, just sitting, watching Tina. Her tiny baby girl had a high-frequency ventilator attached to a tube in her trachea, 3 chest tubes, and multiple IV’s and monitors. If you have never been in an intensive care unit, I can tell you that contrary to what you might imagine, they are quite noisy. High frequency ventilation (she was on a Jet, if any of you have any knowledge of the field) is even louder than regular ventilation. I can’t really explain it, but, I just know that as I was listening to report on her and watching her mom, there was something, this inexplicable… thing… she was very calm, very grounded, but she was very focused on her daughter despite all the noise and intensity of the environment. It was like no one else was there. I introduced myself and explained that I was to be Tina’s primary practitioner, meaning, I would be the one managing her care day to day, with a Neonatologist over-seeing the plans/orders. I felt an immediate connection to Kathy. I don’t really know why, I just did. I was single at the time, never had any children of my own, but I empathized with her. I had no idea how she was managing - she had been so sick herself that they had to deliver her babies extremely early, that in and of itself had to have been the hardest part. Knowing it had to be done, also knowing that her children would be at very high risk because of how premature they were going to be. Knowing it was possible they might not survive. No doubt feeling guilty, though her condition was something she couldn’t have prevented. Now she was still recovering herself, had one baby in the hospital where she was, sick, but stable, and one in extremely critical condition in an entirely different hospital. How do you DO that? How do you not just fall apart? I have no idea. But she didn’t. She was there, she was intent on her daughter. She was my hero. There was just something in the way that she talked to me, they way she listened to what we were telling her about Tina, that told me - Tina may have been extraordinarily sick, but she was going to get through it. Her mom knew it. Then I knew it. She just would.
It wasn’t a matter of denial or not understanding, Kathy is a smart woman, listened carefully and asked good questions. I wish there was some way to explain it. Tina’s dad, Mark, was the same way. Both very calm, very bright, very strong people who had a way of making me feel better when they were there. I think I felt better because I knew that they were good for Tina.
Science, experience, and “just knowing” don’t always work well together. I knew, as did my colleagues, that Tina’s condition did not bode well for her future, even if she were to survive. Neonatology is one of those specialties where, no 2 babies are necessarily going to have the same course despite having the same issues, but with years of outcomes to look back on, you can make some reasonable predictions based on what you’ve seen before. If I had been working strictly based on what I knew, I would have accepted the fact that she was not going to make it, or at best, would be severely handicapped needing years and years of significant medical care. I, however, am very good at suspending my beliefs, working around what my brain thinks it knows, in order to reconcile “just knowing” with my responsibilities. Sometimes this is a good thing, other times, not so much. In this case, it turned out to be a good thing.
Miss Tina did her best to make that difficult, though.
Extremely premature babies are at risk for many, many things to go wrong. There is a reason gestation is as long as it is - babies need that time for everything to mature and develop enough to function outside the womb, without a placenta doing all the work. 14 weeks early, means the lungs aren’t fully developed yet, the GI system isn’t fully developed yet, everything is immature and not ready to be functioning outside mom. Yet, they have to. Unfortunately, there is no going back once you’re out! Their tiny blood vessels are fragile, their immune systems are not ready to go yet, just so much going against them. Tina and her brother both had IVH’s (intra-ventricular hemorrhages - bleeding into the ventricles of the brain, the ventricles being the 4 spaces in the center that are filled with cerebral spinal fluid and are connected to the central canal of the spinal cord). Depending on how significant the bleeding is, this can be a minor issue not requiring anything but periodic ultrasounds to keep an eye on things, or a major issue due to significant bleeding that can lead to swelling, sometimes seizures, and other problems. In the latter situation, neurosurgery is often required to place a shunt in the ventricle, to drain the excess blood/fluid to the abdomen. Tina needed a shunt after they discovered that a clot had developed and was blocking the connection between 2 of the ventricles. So this tiny baby who needed the most high tech machinery we had just to keep her ventilated, went for neurosurgery.
Her lungs were a mess. The terrible irony of neonatal intensive care is that, many of the things we have to do to keep these babies alive, can also cause life-threatening problems themselves as time goes on. Mechanical ventilation is one of those things. Necessary, because babies born that early cannot breathe on their own, their lungs are not even finished developing yet. But the constant force and pressure of air/oxygen being pushed into them by the machine, causes damage. The longer the baby is on a vent, and the higher the settings are (basically, how hard the vent has to work to keep the baby properly ventilated), the worse the long term prognosis will be because the damage from the vent will be significant. So Tina needed a massive amount of ventilatory support for the first several weeks. This did not help her already compromised lungs.
For those first couple of months through that summer, it seemed like every week, usually on Friday, something would go terribly wrong. On several of these occasions, Tina tried to leave us. It was kind of a nightmare, I started to dread going in on Fridays, I can’t even imagine what it was like for her parents. Every week we’d have to intercept them when they came on to the unit to shepherd them in to the Meeting Room, so we could sit down and explain what dire straights Tina was in now. It was horrible, so many times having to sit in that room and tell them what went wrong this time, to expect the worst, that we weren’t sure if she would make it though the night. Again. And again. One of the worst Fridays stands out in my memory as probably one of the most difficult days in my life. She’d actually been doing ok for a couple of weeks, things seemed more stable, she was even being weaned off her IV nutrition and was being given tube feedings. Lulled in to a false sense of security though. We’d finished rounds, I was sitting at the desk putting orders in the computer when I head monitor alarms starting to go off, nurses running, then they were yelling for me and the Fellow that was on. It was Tina. My heart and stomach pretty much hit the floor. When I got to her bedside, she was coding, her tiny belly swollen, discolored and tense - I knew immediately what was happening and as much as I had believed she would “be ok” even through everything before, this looked like it might be the big reality slap in the face. She had NEC. N.E.C. stands for necrotizing enterocolitis, which is basically an acute inflammatory response of the intestines to feedings, in severe cases leading to intestinal necrosis (death). As with everything, this can be mild to severe, Tina of course, went all out with a severe case. Her onset was sudden, and almost killed her. We had to resuscitate her most of the rest of the day, and I mean, many, many hours, just trying to keep her alive. I had to hand the rest of my patients over to the other docs, the Fellow and I did not leave her bedside. Her gut had essentially disintegrated and she needed emergency surgery to remove the dead intestines to try to save what might be left. But surgery wouldn’t take her while she was still literally on the brink of dying any moment. So we kept working on her. I stayed in to the night, until we finally got her stable enough that surgery agreed to take her. It took more than a little convincing on our end though, they knew her history, knew how bad her prognosis was even without this terrible complication, they were very much against taking her at all. This is where the science and knowledge part gets in the way. Luckily for Tina, the neonatologist we had on her team, Dr Polin, seemed to have the same sense about her that I did - he was a tremendous ally and had a lot more pull with the surgical powers that were than I did or even the Fellow. So, at some point between 11pm and midnight, they took her to surgery. I stayed with her parents. I wasn’t leaving until she came back, I didn’t know if she would come back. I had to stay.
They brought her back to the unit at about 2:30, 3am. Now, I know from talking to Kathy that what the surgeon told them, and what he told us, was very different. I hesitate to write this now, because I know that what he said to them was important and it helped them get through a lot with her. He told them “where there is life, there is hope”. Which is certainly one of the only ways you can stay positive in cases like this. I commend him for his sensitivity with them. What he told us (“us” being the medical staff) was this: “We opened her up, looked around, saw that she had very little bowel that was not already necrotic, so we decided that there was no point in doing anything. She does not have enough viable bowel to survive. We put a drain in, but there’s nothing anyone can do at this point, she just doesn’t have enough left. We’re not sure why you guys pushed so hard for us to do something, she is not going to make it.” I’m sorry Kathy. That is almost word for word what he said to me that morning. I didn’t know what to do. Kathy and Mark were there, still, with that calmness and strength they had, and I had years of experience and science running through my head that were no longer staying neatly tucked away behind my “just knowing” she would be ok. I had to go home, at 4 am, I finally did. I needed a couple hours of sleep before heading back in the morning and I had to get my head together again. I was not ready to give up on her. I knew her parents weren’t, and wouldn’t be. I had no idea how to work around the not having enough viable bowel issue, that’s really pretty cut and dry. So I just took it one day at a time from there on out. I’d learned that you couldn’t ever get too comfortable with her, so it really was just day to day.
She had another terrible set back one day when she started seizing and we couldn’t stop it for several hours. Seizures are not good for your brain. On top of everything else she had going on, this just seemed like overkill on the “everything that can go wrong, will go wrong” scale. Once again we got her through it though, once again dragging poor Kathy and Mark in to the dreaded room to explain yet one more thing that was likely to result in a very poor outcome for their daughter. Seriously, how much can you take? They took a lot. I spent that summer feeling like I’d been run over by a truck several times, I can’t even begin to understand what it was like for them.
One day at a time though, we carried on. Tina made it through each crisis, defying all odds and reason. Dr Polin and I cautiously decided to work on getting her home once it seemed like there was truly nothing else that could set her back any further, she’d already been through it all. We started weaning her ventilator settings, slowly, but wean them we did. We started feeding her again. Why? We had no idea, we knew it likely wouldn’t work given what surgery had told us, but we also knew we couldn’t leave her on IV nutrition for much longer, that can also lead to problems… you know, that’s just what she needed… more problems. So, slowly but surely, we were making progress. She was tolerating the lower vent settings, she was tolerating feedings - which pretty much blew everyone’s minds. Surgery would come in to do their rounds in the mornings, stop by her bed, shrug their shoulders, shake their heads in disbelief and leave. It was completely inexplicable. Yet, it was happening, who were we to argue?
With all of our other patients, it was science, it was facts, it was evidence-based medicine. With Tina, we were flying by the seat of our pants by that point. Everything bad thing that could have happened, happened, yet she survived, and not only survived, but here we were actually making progress with her. None of this made sense to anyone. This also put me in opposition to most of the other medical staff on numerous occasions. In big teaching hospitals like CHOP, medical residents and Fellows rotate through the different specialties each month. Only the Neonatologists and the Nurse Practitioners were consistent. Even the Neonatologists rotated every month though, so at the beginning of each month a new group of docs would come in. Most of them would just look at me like I head 2 heads when I was giving report on Tina, not understanding why were bothering trying to get her to the point of going home. None of them believed she would ever make enough progress to be discharged and most believed her chronic lung disease and/or her lack of functional intestines and tendency toward sudden, intractable seizures would kill her.
By the early Fall, I was more convinced than ever that we were going to get her home. Her mom, dad and I became friends. This might be the point at which you think, well, now she’s letting her emotions get in the way of her actions. And you’d be right. However, this is where my part in the story becomes more significant. This is also one of those times when my “just knowing” and my emotional commitment to something I believed with everything I had, was a good thing.
With every emergency we had with her that summer, there was always some convincing that needed to be done on several levels. There was always someone around who questioned what we were doing, why we were putting this baby through so much, wouldn’t it just be best to let her go? Other docs, specialists, nurses, you name it. At those times I was lucky to have had a Fellow or Dr Polin around to back me up. As things settled down, and her issues no longer constantly threatened her life, it was more and more just me. Dr Polin wasn’t the attending physician for several months, and we had new fellows coming in. Tina’s history, x-rays, ultrasounds, and prognosis were pretty terrible. New docs came in and constantly questioned me on what we were doing. I had to work hard in the face of what everyone knew, to convince them to let us continue our plans for trying to get her home. Some eventually gave up and just let it alone. Others, did not. I would come in after a weekend off to discover her vent settings back up again. What happened? Oh, well, the docs on over the weekend didn’t think we should be weaning her when her x-rays look so bad so they put her settings back up…. wtf?! Are you kidding me? She was doing FINE. I don’t care what her x-rays looked like, I know what she looked like, I know that her blood gases have been good, I know that she’s tolerating the lower settings. So I’d have to work her back down again and continue to fight with people over how I was managing her. As I mentioned earlier, the longer a baby stays on a ventilator the worse the prognosis. So when people would turn her settings back UP after we had worked so hard to get them DOWN, was just frustrating beyond belief. These people were letting science get in the way of what was right before their eyes.
The turning point to all this constant pushing and pulling was one morning when we had a new attending and a new Fellow starting their month in the unit. We got to Tina, I gave them the whole story, including where we were at then and what our plans were. Once again, I started getting grilled on why on earth we would be even trying to get her off the vent, don’t you know she has chronic lung disease? The Fellow, right in front of me, walked over to her vent, and cranked up the settings. Oh. No. You. DIDN’T. I was livid, I’d had enough of this BS, I was her primary practitioner, Dr Polin was backing me up on the plans, Tina was actually making progress and doing well why couldn’t everyone just back the f*#% off ?! I let loose on both the Fellow and the Neonatologist right there in the unit. Fellow started yelling back. We were hauled in to the hallway. I was told I was letting my emotions get in the way of her care. I told them they were letting an x-ray get in the way of it. They weren’t looking at Tina, if they were, they’d see that she was doing well with the weaning. I threw my trump card at them - I went to Dr Polin, told him what was going on, and asked him to please tell the rest of the medical staff to not interfere with plans that he’d signed off on. He did. They finally left me alone to keep working on getting her home. Every morning on rounds they’d just nod and roll their eyes at me.
Until the day we sent her home.
We got her off the ventilator. We got her off all her IV’s and on feeds. She wasn’t having any more seizures. We sent her home.
Often when premature babies survive their initial ordeals in the NICU, they can end up with significant long-term issues, like, Cerebral Palsy, BPD (broncho pulmonary dysplasia, basically, chronic lung disease), feeding issues, learning issues, the list goes on. We got Tina home but I had no idea what her life was going to be like. I was glad she survived, that her parents and twin brother finally had her at home, but I also worried about her future. We kept in touch, after she went home. It was so great to see Tina somewhere other than the hospital and she seemed to be doing really well.
6 years later, in the summer of 2000, I left Philly and moved to Seattle. The last time I saw Tina in person she was only 6. But her mom and I have kept in touch over the years, to this day.
Tina is now 16. She has had some difficulties, some physical, though not severe. There have been some learning and social issues, too, most of which she is able to make progress with because of great parenting, great therapies, and support behind her. It’s not always easy for Tina, and I know her parents and brother worry about her. But I also know that with a family like hers, she will always have the love and help that she might need. Tina is special. She survived when she simply should not have. To this day, I cannot explain how it is she managed to not only survive, but eat, given how severe the situation was when she developed NEC. It’s beyond anything that makes sense. I mean, really, the only thing I can think of is that the necrotic bowel somehow didn’t die completely AND got better… which doesn’t happen, but otherwise I have no idea. Why we were able to get her off the vent, why she didn’t end up with severe CP, why she didn’t continue having the horrifying seizures, why, despite the things that are difficult for her, is she essentially a happy, healthy, beautiful 16 year old girl who wants to learn to drive and loves horseback riding? I can’t tell you. But her mom and dad knew. And I knew. We just, knew, that she would be ok, that somehow, she would make it. Make it she did.
I have had the great fortune of not only being in touch with Kathy all these years, but also Tina herself over the last year or so on, yes, Facebook. Tina and I talk almost every week. I tell my oldest son Zach, who will be 14 in October, the story of taking care of her when she was at CHOP and how I talk to her now on FB and he just thinks that’s the coolest thing - so do I!
I went to work at CHOP looking for a cutting-edge career. What I found, was far more valuable. Tina and her parents taught me a lot. About sometimes letting your faith in things you don’t understand guide you. About how science and medicine need to be careful about not having tunnel vision so they can see what is in front of them. I learned that sometimes my stubborn streak and tendency to let my emotions take over is not always a bad thing. I also was given the gift of knowing why I was there, in that place, doing what I was doing, at that time. I was there for Tina. Serendipity. She needed someone to fight for her and fight I did. Literally. To this day, aside from my own, wonderful children, I can say without hesitation that Tina’s survival is what I am most proud of accomplishing in my life. I know that I was not alone, there are a few other people out there that were an integral part of keeping her alive and getting her home. Dr Polin especially. He has since moved on from CHOP, and is currently the Director of Neonatology at Columbia University Medical Center in NYC. I think he’d be very proud of Tina too.
This was my part of Tina’s story. I know her mom and dad could tell you a better one. As her parents I can’t and frankly don’t want to, imagine what it was like for them. They were the reason I knew I had to do what we were doing. Mark and Kathy, you guys are amazing!
Tina herself has been asking me a lot about writing lately. Hopefully one day, she will tell the world her own story.