There’s this excellent book that I checked out from the library called Almost Home, by Christine Gleason, the chairwoman of the neonatology department at the University of Washington School of Medicine. I got to see Dr. Gleason speak at an event called the Duncan Seminar at Seattle Children’s Hospital back in March. That event was for therapists, caseworkers and others who deal with special-needs children to learn more about prematurity, its history, and current and future treatment methods. And, they let me in even though I’m not a professional. (That made me feel special.)
This book is a collection of Dr. Gleason’s more memorable patients from the beginning of her time as an intern in the late 1970s to the mid-2000s, when she was a professor. The book is quite accessible. While she uses plenty of medical terminology, she does also explain what the words mean (although as a preemie parent, I already knew most of them) and the book has a lively, sometimes suspenseful pace that makes you want to keep going to find out what eventually happens to the babies and parents in the stories.
It’s also a pretty stark book, providing no sugar-coating of the risks that face a preemie. You have to get up to chapter 5 before you find a survivor. Sorry for the spoiler, but this is worth pointing out. If you are a parent who currently has a child in the NICU, this book is not for you. It’s got stories of kids who were making good progress and really impressing the staff, and then the child takes a turn for the worse and dies within 12 hours. If you’re a future medical student and you’re thinking about neonatology, then this would be an excellent book for you to read to see if this edge-of-life, experimental kind of medicine is for you. Or, if you’re a friend of a preemie parent, and you wonder why the preemie parents turn pale whenever they talk about the time in the NICU, this will make you understand why.
The book also shows the somewhat dark world in which medical staff relate to each other. One baby has a 15-year-old mother who never visits and is probably going to give him up for adoption. Dr. Gleason makes several attempts to contact her despite the objection of the teenager’s mother, encouraging her with information about the baby’s progress. But, just before the mother and grandmother come to visit, the baby’s condition worsens, meaning that they get to sit with him for a short time before he dies. A colleague sarcastically congratulates Dr. Gleason for “staging a death scene” when it would have been better to just let the mother and baby be separate.
Another story involves a code blue in the NICU, but it’s an adult code blue because a visiting photographer collapses in the NICU. Dr. Gleason finds the largest IV catheter she can find (but it’s still a neonatal catheter) to administer the drugs to help resuscitate the patient. When the woman gets over to adult intensive care, the staff have a great laugh over this tiny catheter. (And, by the way, the photographer died later, ho, ho, ho.)
One point that I had a little contention with was a patient for whom she writes that the baby had one of the worst outcomes of any baby she’d treated. This was a baby who got all sorts of life-saving care at birth, but looked like he was going to die from persistent fetal circulation (meaning his blood vessels wouldn’t open up to circulate blood). With much effort, they were able to get him to turn pink, but then it turned out that they had missed his primary problem. A head ultrasound revealed that he had hydranencephaly, meaning that his cerebral cortex had melted in the womb, and he would be capable of basic reflexes such as sucking, but he would not be able to live longer than a year. At this point, Dr. Gleason questioned whether all of the life-saving work they’d done was worth it. The baby did live for a year, and had a profound effect on his mother’s life, who suffered from an eating disorder and other mental problems including agoraphobia, which made it so she almost never left her home. The mother got a new purpose in life, caring for her son, and yet, Dr. Gleason calls it “worst.”
The book also provides a little insight in to the life of a doctor rising through the ranks of intern, resident, fellow, attending, professor. She marries a medical student whom she met in medical school, but he leaves her. She moves to San Francisco, but can barely afford rent, which in the 1980s was a mere $585. She re-marries and has children. She testifies at a trial while nine months pregnant herself, which seems like a dramatic scene out of ER or Grey’s Anatomy or some other medical drama.
This book also provided me with some insight as to what was going on with our baby. Gabriel was born at 22 weeks and 6 days of gestation, and the doctor recommended against resuscitation. We told him to go ahead and do it. He did, and said, “first we have to see whether he’ll accept the breathing tube.” Almost Home gave more detail as to what that means — not accepting the breathing tube can mean that you put the tracheal tube in and puff air in there, and nothing happens and the lungs don’t inflate. Another possibility is that the lungs burst when inflated. Another is that the lungs do inflate, but the baby’s arteries are all clamped down and refuse to carry any meaningful quantity of blood around the body. We still disliked that doctor’s recommendation, but the book helped us understand his perspective and some of the bad outcomes that he was trying to avoid.