Sunday, May 29, 2011
Wednesday, May 25, 2011
Tuesday, May 24, 2011
She was 1.7 kg (about 3 3/4 pounds), born almost two months early, with at least two major malformations in her tiny body. Her open spinal cord with its fleshy ballooning mass of flesh and nerve on her lower back was the most obvious one, and related to that her bizarrely hyper-extended knees with her ankles resting up by her ears. The on-call team scooped her up from the delivery room and settled her in an incubator in the nursery with CPAP, a high-flow bubbling oxygen tubing in the nose that helps babies breathe. By the time I saw her Monday morning she looked relatively comfortable, but I ordered a routine chest xray since she was on oxygen. We had a lot of other sicker babies (or so we thought) so her film was the last one I reviewed a couple hours later. I flipped it up on the light box expecting the usual tiny preemie chest and glazed appearance of immature lungs. Instead I did a double take. What was that? Her heart was pushed far to the right side of her chest, because her stomach and intestines had crept up into her left chest, filling the space. There was very little to be seen of lungs. This is an internal hole between abdomen and chest, called congenital diaphragmatic hernia. A condition that has no more than a 50% survival rate in the most technical of NICU's with heart-lung machine type therapy, let alone Africa, let alone in a premature baby with an open meningomyelocele.
However, most of Monday, she seemed to be defying the odds. One thing about Kijabe, you never know when you're looking at the baby that could be the first survivor of some difficult surgical problem, because we have great surgeons. And one thing about Jesus, you never know if you're looking at the most unlikely specimen of grace and miraculous healing. So we consulted the neurosurgeons (for her back) and pediatric surgeons (for her intestines-in-the-lungs problem), read up in some texts, and decided to give her as much of a chance as we could. Which would mean intubation (tube for breathing) and ventilation (putting her on a machine). Which would mean ICU. It took until about 6 last night to get that set up, but she did remarkably well. Amazingly the little bit of lung she had seemed to be working well. We gave her tenuous prognosis to mom and dad, and made plans for the first surgery to begin this morning.
But that was not to be. The poor visiting anesthesia fellow from TN who got stuck covering the call in ICU struggled with her much of the night, and by morning he was convinced she was not going to make it. He had "coded" her twice, giving strong drugs for a falling heart rate, re-intubating, taking her off the machine to manually push the air in faster and harder. I got another xray, spent an hour trying this and that, but she was failing fast. She was nowhere near stable, and surgery would have to be canceled for today. And if she was getting worse rather than better on maximum intervention, it was not likely that surgery would be possible later. It is so hard to make the change from "let's do all we can to give this baby a chance" to "we are prolonging the inevitable, giving her pain for no reason". After talking to the surgeons and nurses and ICU fellow, everyone was waiting for me to make the decision about what to do.
So I did, one of the hardest type I have to make. I called in the chaplain and family. Dad had disappeared and turned off his phone, sensing the disaster no doubt. So I went over the whole picture with Waithera's mother and two aunts, by the bedside. They listened soberly, with some quiet tears, but were very understanding. We prayed together, then I removed all the monitors, IV's, blood pressure cuff, and endotracheal tube. I wrapped her up in a blanket like any other baby, and handed her to her aunt. Waithera opened her eyes briefly and had one of those reflexive smiles, very sweet. Then we all sat for half an hour as her mother held her in her lap, watching her turn from pink to grey, with shallow gasps of breaths. Her little heart stumbled along at a very low, non-sustainable rate. She blinked and spasmed a few times. We waited. I read aloud from John 11 and talked about the truth that Jesus IS the RESURRECTION AND LIFE, that He will make Waithera a new and whole and perfect body to go with her sweet soul some day. But Jesus, knowing that, still wept over his friend Lazarus, so even as we held Waithera and affirmed the truth of her resurrection healing, it was appropriate to weep, to mourn her loss. Finally her little heart just gave out, and I pronounced her dead. The aunts both took another turn to hold her body in goodbye.
As death-watches go, I was thankful for the process. I'm glad we tried everything for a while, but I'm also glad we didn't keep coding her and injecting her and refusing to give up. It's a very hard line to establish, the line between giving our best effort for any child regardless of birth "defects" and a stubborn refusal to admit defeat. It is a holy privilege, a weighty one, to sit with a dying infant, to witness the last moments, the passage from this world to the next. I hope I don't have to watch another death soon, but if I do, I pray for the right mix of hope in the truth and mourning for the loss.
Sunday, May 22, 2011
Thursday, May 19, 2011
Tuesday, May 17, 2011
An hour or so later we were in xray with our kidney patient when we got the dreaded "999" pages to the nursery. Anand and I ran through the halls to find Nelly blue and limp. Nelly has been our patient since her birth more than six weeks ago. She was petite and fragile, with disfiguring clefts in her upper lip/nose on both sides, and some minor anomalies of her spine and fingers and toes. But her biggest problem was her heart, a hidden and serious malformation. We have walked a tightrope with her for the last month, titrating doses of cardiac meds, almost losing her numerous times, trying to get her to cardiac surgery experts (she's the one who came back after attempted transfer because the money demanded was impossibly high and the care less personal in Nairobi). Her beautiful mother and "do everything you can" caring father were constantly at her side. Usually when she became agitated and hypoxic her mother could calm her down and we would see improvement. But not today. Her heart just gave out, basically, becoming more and more tired, less and less functional, until it stopped. Her dad stood by us for the last hour or so of her life as we tried all we could do, and understood. Her mom simply cried her eyes out when it was all over, which is exactly what I would do. I love seeing how parents can wrap their hearts around a baby like this who is so tenuous and abnormal-looking, so precious and loved.
And while we were working on Nelly, an intern who was hovering nearby finally said "you're probably wondering why I'm here" (I wasn't, but that's OK) and told us the sad condition of a one-day-old who had also just come to casualty. I knew the nurses were at their limit (we had 20 on the service at that point) but asked if we could admit just one more . . and we cleared the body of the first baby away just in time to repeat the same story, newborn, high fever, not feeding, unwrap and find a baby convulsing and desperately ill. This one though was still breathing well, and still with a stressed rapid heart rate rather than a declining one. So our day ended with another all-out push to investigate and treat, to give fluids and antibiotics, to stop convulsions and modulate temperature. When I left about six this baby was still alive, so I'm hoping she can pull through. I thanked the bustling charge nurse for taking on yet one more admission, and we agreed that if we had declared the nursery full and transferred the baby from the emergency department to another hospital, she would have been dead before arrival. Still a very hard decision to make when we can barely manage the ones we already had. Not even mentioning the baby delivered in our own hospital this morning who would have died without resuscitation, or the one from yesterday with a similar story of rescue.
The nursery is an interesting place, in many ways a sort of intermediate station or gateway between heaven and earth, a territory where little bodies and souls seem to be only partly inhabiting one sphere or the other. A place where we watch in awe as the improbable healings occur, but also choke on our prayers with grieving parents as the reality of loss sweeps over them, where we clean up and move on to the next needy person.
Monday, May 16, 2011
Friday, May 13, 2011
Wednesday, May 11, 2011
Saturday, May 07, 2011
Friday, May 06, 2011
Wednesday, May 04, 2011
-Nelly, below in her traveling duds, a baby with cleft lip and severe heart disease, on day 40 of life and at her parents' request we transferred to a private hospital in Nairobi for expert cardiology management. A 36 hour nightmare later (they asked for a several THOUSAND dollar deposit pre-admission, transferred her to the public hospital, where the impatient dad wouldn't wait for the cardiologist) she came back, weight down a little but miraculously not much the worse for wear. This is a hard medical system to navigate for parents of special-needs kids.-