Why Did I Have No Clue Our Child Could Die?

A few weeks ago, I put some maternity clothes in a box in the nursery. I found one of my two main pregnancy books, Mayo Clinic Guide to a Healthy Pregnancy, on top. Out of curiosity, I decided to see if the book talked about neonatal death and I just missed it, since I didn't recall seeing anything about it when I was pregnant.

Sitting on the nursery floor, I found the chapter entitled "Pregnancy Loss." It discusses miscarriage and states, "Miscarriage is the spontaneous loss of a pregnancy before the 20th week. About 15 to 20 percent of pregnancies end in miscarriages. But the actual number is probably much higher because many miscarriages occur so early in pregnancy that a woman doesn't even know that she's pregnant" (p. 471). The chapter also covers ectopic pregnancies and molar pregnancies. However, it does not discuss that you can still lose your child after the 20th week in a stillbirth. 

The glossary gives the definition of stillbirth as "delivery of a baby who has died in the uterus” (p. 491). However, stillbirth is not in the index and I could not find it discussed anywhere else in the book. Topics also not listed in the index are fetal distress, neonatal death, perinatal death, maternal death, mortality, or death. The only related item I could find was SIDS (Sudden Infant Death Syndrome). 

No wonder I did not know it existed. I then checked emergency C-sections and NICU; both are covered. 

Emergency C-sections are mentioned in relation to babies having abnormal heart rate patterns (as was the case with Isabella). The most dire portion states that "While a woman's risk of death after a C-section is very low - estimated at about 2 in 100,000 - it's about twice as great as delivering vaginally" (p. 226). It goes on to say, "It's normal to have some worries about how you and your baby will fare during a cesarean birth, but don't let these worries get the better of you. Almost all mothers and babies recover well after a C-section, with few problems" (p. 226). It’s pretty much impossible to not be worried if you have an emergency C-section because your child is showing abnormal heart rate patterns. After going into details about the surgery itself, the book declares, "You may be able to hold your baby as your surgeon closes the incisions in your uterus and abdomen. At the very least, you'll probably be able to see your baby snuggled into your partner's arms" (p. 230, italics and bold added). Of course a book is going to emphasize that C-sections are okay, even when a surprise. While I never read the C-section part while pregnant, I would have assumed that we would fall in the category of my husband holding our daughter and not noticed the "probably." 

What does it say about the NICU (Neonatal Intensive Care Unit)? The only discussion is in relationship to prematurity, or birth before 37 weeks. The book states, "More than two-thirds of babies born at 24 to 25 weeks can survive with the proper medical care." Later the chapter discusses possible complications of premature birth including respiratory distress syndrome, bronchopulmonary dysplasia, apnea and bradycardia, and intracranial hemorrhage. However, the five pages dedicated to the NICU fail to mention that a full-term infant may also spend time in the NICU for a wide variety of reasons.

Placental abruption (when the placenta detaches from the uterine wall before delivery) is also covered. While it does state that this "can be life-threatening for you and your baby," no statistics are given. (I did not have a placental abruption but have met women whose children died because of this.) 

After reviewing the Mayo Clinic's pregnancy book, I felt somewhat reassured that I did not simply miss reading anything about neonatal death. Even after going back and looking for sections on infant mortality, what happened to Isabella was never covered. 

After perusing the Mayo book, I compulsively checked my other go-to pregnancy guide, Expecting Better. This book is written by Emily Oster, an associate professor of economics. She scoured research articles while pregnant and wrote a book that delves into the origins of the numerous pregnancy recommendations. I appreciated her approach because I, too, appreciate knowing the data behind decisions and guidelines.

She does cover infant and child mortality in her index. In fact, there are eight subheadings under mortality. "Death" is also listed in the index with a note to see infant and child mortality and maternal mortality. Some of the mortality discussion is in the chapter on home birth. She even mentions maternal morbidity and says, "Luckily for those of us who live in rich countries, maternal morbidity is really, really rare: in the United States, it's about 11 in 100,000 births" (p.271). I don’t know why there is such a difference between her number of 11 in 100,000 and the Mayo Clinic’s of 2 in 100,00. In commenting on the difference between birthing location and infant death, she writes, “The American Congress of Obstetricians and Gynecologists…suggested that women be told that the risk of infant death is 2 to 3 times higher with a home birth than in a hospital. Although the risk of infant death in either group is really, really tiny (2 in 1,000 versus 0.9 in 1,000), this increase may be big enough to convince a lot of women that home birth is not for them” (p. 268). She concludes the home birth chapter by saying, "Some studies suggest that mortality risks are higher with home birth, others do no. Risks are low in any case."  I should mention that I never read the home birth chapter while pregnant because I always knew I wanted to give birth in a hospital. 

Had I read this chapter, I still would have concluded that we were pretty much guaranteed to bring our daughter home.

Oster has a chart in the chapter titled "Premature Birth (and the Dangers of Bed Rest)" that lists the probability of death in the first year based on completion of weeks of gestation. It shows that 89.09% of births are full term (37+ weeks of gestation) and of these, there is a 0.2% chance of death within the first year. She states, "Infant mortality in the United States for full-term babies is just 2 in 1,000 births" (p. 183). 

After finding this number, I talked with my husband about how I must have known it could happen. He pointed out to me that the most appropriate conclusion from a 0.2% chance of our full-term daughter dying is that there is a very tiny chance of it happening. It would have been an unnecessary and unfounded fear had I looked at that figure and thought, "Oh no! Our daughter could still die even full-term!" He said it would have given the number more credence than is needed or useful. 

Since I read most of Expecting Better, underlined decent portions of it, and did my own research, I was aware of the risks of premature birth. I vividly remember hitting 36 weeks and saying, "We're good. She could be born now any time. Since we live in America, it's pretty much a guarantee that both of us will survive." Pretty much a guarantee does not matter if you are in that 0.2%.

After reviewing both books, I realized I must have known that there was a teeny tiny chance of full-term infants dying. Yet the knowledge never sunk in. For most women, there is no need for it to sink in. Yet being that 1 in 500 absolutely sucks. And that 1 in 500 does not tell the story of why a child died. UNICEF reports that most neonatal deaths globally are due to preterm birth (27%), severe infections (26%), and asphyxia (23%). I’m still trying to understand where Isabella fits in and how to process the fact that we are part of that 0.2%.

Harms, Roger, and Myra Wick. Mayo Clinic Guide to a Healthy Pregnancy. Rosetta Books, 2011.

Oster, Emily. Expecting Better: Why the Conventional Pregnancy Wisdom Is Wrong-- and What You Really Need to Know. The Penguin Press, 2013.

“Newborn Care.” UNICEF - Progress for Children 2007 - Newborn Care, www.unicef.org/progressforchildren/2007n6/index_41806.htm.