In writing drafts of my book, people have said that it needs a preface. So, I wrote one. I haven’t been publishing every chapter of this book on the blog because they might not stand alone well, and because I don’t want to give away everything that’ll be in the book. But, the preface is generally a freebie to the reader anyway, so here it is…
Most parents worry about their children ending up on drugs and in jail, but not in the first month after birth. Our first child was born four months prematurely, put in an incubator, hooked up to pumps and monitors and given an assortment of drugs to make his heart go faster. He was kept in a special building downtown where we had to sign in and follow rules about when we could see him and when we could touch him.
He was sent to baby jail for breaking the rules, by being born so early that the doctors said that he was outside the edge of when life, when a baby might emerge alive. In fact, his doctor did not want to treat him at all at birth, saying that his chances were so poor it was better to just let him go. He was born at 22 weeks and 6 days of gestation, and weighed one pound, six ounces, or 652 grams. This made him an extremely low birth weight infant, also called a micropreemie, a class of newborn we had never thought about until the day we checked in to the hospital.
Micropreemies exist in a precarious space and time, generally born right at the beginning of the third trimester of pregnancy, making everyone asking “Who’s really here?” A few weeks before the stage when Gabriel was born, and a pregnancy loss would be called a miscarriage. A few days before he was born, the doctors were telling us to think about aborting him — he was incapable of survival outside of the womb, and Miri’s condition was putting her health at risk. At the stage in pregnancy when he was born, it is questionable whether babies would be treated, or left to die in the delivery room. In the 23rd week of pregnancy, doctors and parents have a complicated ethical and moral balancing act to decide whether it is worth trying to save the baby — Gabriel’s first doctor did not think it was worth it. Also, every day of pregnancy that goes by without a birth is precious, adding 3 or 4 percent to the baby’s survival chances. Add two weeks of gestation to the calendar, and a baby gets to a point where doctors feel ethically compelled to try to save a baby, even if the parents want treatment withheld.
Parents ask, “Who’s really here? Am I really a parent?” as machines, drugs, tubes and wires operated by highly trained nurses are what keep their child alive. Parents also ask whether their child is really a child at this point when he or she is the color and size of a cooked lobster. The purpose of neonatal care is to imitate the environment of the womb as much as possible for the interrupted third trimester, so parents of preemies may still think of their child as not quite arrived even though they have a birth certificate. We certainly thought of him as not quite arrived as other parents had their first weeks at home, bonding with their babies, introducing them to pacifiers and toys and waiting for a first smile. We had none of this, but held on to hope that it might come later. A micropreemie feels like a science project, with parents learning more about their child’s blood-oxygen saturation, respiration rates, and other vital signs than about their personalities.
Suddenly, a parent in a situation such as this becomes a philosopher, wondering what really makes a person a person. When people we know die, we feel sad over their absence. Things that remind us of their personality, or possessions they left behind make us sad, but with a baby who dies in the womb or at or shortly after birth, there will be none of those strings to the old memories that will draw us close. An extremely premature child is a child, but there is not much to hold on to.
The doctors brought us statistics about survival and impairment of micropreemies as they get on later in life. They encouraged us to think about our son’s quality of life rather than just his life. We thought about his potential future and whether we might cut him off from it with a bad decision. Our son was healthy in the womb, and I thought that the time we were living in would become a rock under my skin, something that would never heal, the Time Before, when he was all right, versus the Time After, when his future had been stolen or mutilated.
We also questioned our motives in wanting to become parents — wanting to hold a baby and love him is hardly a selfish pursuit, but does there come a point at which you are torturing a child in order to have a child? And, with end-of-life questions, how much authority do you really have in deciding whether to keep treating a baby, or to just let him go? An adult can tell his relatives what kind of end-of-life care he wants, and then leave someone with power of attorney. With an adult who does not leave such instructions, relatives can try their best to come up with a care plan, saying that it is the patient’s own fault if he spends more time on life support than he wanted.
But a baby cannot express any such desire, leaving parents and doctors to decide who lives and who dies. I thought of this as the hell of playing God.
Doctors are said to be trained to have the mind of a scientist and the heart of a priest, and this question is one of the most vexing in all of medicine, with all kinds of advanced treatment that can be provided, and with all kinds of suffering that the doctors have to witness. Our doctor at first recommended against trying to help our son, but said that if Miri gave birth after midnight that night, he would show up and provide care, but his heart would not be fully in it.
Through all of the abort-and-abandon recommendations we were getting, we felt like we were competing with a rival religion based on utilitarian ethics for dominance of our family. It might be a mistake to call the doctors’ ethical system a “rival religion,” but the “separation of church and state” that Christians use to relate to a secular world kind of breaks down when the life of a family member is on the line. The doctors could certainly make a statistical argument that a baby born at this stage was more likely to die than survive, and I suppose they could argue that it would reduce overall suffering if children at our son’s stage were not helped. But it was our child, and, being Christians, we believed we were called to be faithful, not successful, and all of their logic and ethics were starting to offend us.
This book is here to tell the story of our miracle baby, and of the very complicated status that micropreemies have when they come in to our world. We want to advocate that doctors be more willing to try saving them, and we want to push for doctors to be less pessimistic when they provide counseling to parents who are likely to have a baby at the edge of viability. We, and other preemie parents we have talked to, have been surprised at doctors who seem to think that a dreadfully dark talk about our child’s low chances is what is necessary to get us ready for the shock of death, as if the experience of losing a child can be improved in advance.
We also want to provide a boost for the faith of other families doing through something like this themselves up against all the logic and ethics coming from the doctors, and the emotion coming from their extended families. Faith ventures in to the unverifiable, which doesn’t mesh well with logic, and it deals with unconditional love, which doesn’t do so well ethics and its desire to balance things and maximize benefit. Faith also refers to an unchanging God (at least for monotheists) which means that if you are overwhelmed with emotion, God is not similarly overwhelmed, so you do not have to change the rules of your worldview to deal with the crisis.
The experience of having our child go through a neonatal intensive care unit also opened our eyes to the remarkable field of neonatology, which is only about 50 years old and has made astonishing progress in bringing down the infant mortality rate in developed countries — from 100 per 1,000 live births in 1915 down to 5 in 2010 in the United States, and Japan has an even lower infant mortality rate at 2 per 1,000 live births. When neonatologists talk about the beginning of their field, the event they talk about most is the baby of President John F. Kennedy and Jackie Kennedy, who lived for two days in 1963 before dying of respiratory distress syndrome. The baby, Patrick Bouvier Kennedy, was born at 34 weeks of gestation. At that time, 90 percent of babies in his condition died, but by the 2010s, 90 percent of babies could survive with treatment.
In addition to saving babies, neonatology has also created some diseases. Or, it might be more appropriate to say that it has allowed babies to survive long enough to get diseases unique to preemies, or that life-saving treatments have side effects that cause other diseases — for example, breathing tubes can save a baby’s life, but also cause a condition called bronchopulmonary dysplasia, or scarring and inflaming bronchial tubes in a preemie who had been intubated. Also, too much oxygen can cause blindness in babies, a condition called retinopathy of prematurity, which has only been observed since the middle of the 20th century. Another unique illness that kept us up at night was necrotizing enterocolitis, or dead bowel, which happens to 7 to 10 percent of micropreemies, and is 20 to 30 percent fatal after diagnosis. Antibiotic use in the NICU increases the risk of a preemie getting necrotizing enterocolitis, but doctors have to be very aggressive in attacking a suspected infection with antibiotics as a preemie’s underdeveloped immune system can be easily overcome by an infection.
Our son was at risk for all of these, and of course we wanted to say “do everything you can” to the staff in the NICU, but given our son’s precarious state, everything they did also carried the risk of causing a more dreaded condition than the one they were trying to correct.
About 250,000 babies are born prematurely in the United States each year, and an Institutes of Medicine report in 2007 made a low estimate that the overall cost at $26 billion to the economy. The United States has one of the higher preterm birth rates among developed countries at 12 percent, whereas most Western European countries have preterm birth rates in the 8 to 9 percent range. For most preterm births, the cause is a mystery, but researchers are working on finding ways to prevent or delay preterm births, and we are desperate to think of ways we can prevent another intensive-care experience like this one if we should have another pregnancy.
Premature infants have also become a profit center among hospitals as they discovered that a NICU could put eight intensive care patients in to a room that could fit two adult patients, and hospitals are now opening more NICU beds than their communities can fill, and with that comes the temptation to fill them with term babies who might have a minor issue that does not really require intensive care.
We will be telling the story of our son’s pregnancy, birth and NICU treatment through journal entries we were keeping during the time we were in the hospital. In between journal entries, we will also be writing about the larger issues facing preemies, and their care in NICUs. Our experiences made us curious about how his treatments were discovered, about how doctors around the country and the world deal with the ethical and legal aspects of preemie care, especially as our doctor’s recommendation to withhold care and let him go made us develop some very strong opinions on the topic. This is both the story of our son’s growth and recovery, and the story of an experimental kind of medicine that saves lives, and carries with it great risks of disability and other damage to tiny infants.