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.