Ten percent of babies born in the U.S. are preemies. But that one word, "preemie," encompasses a range of medical and cultural experiences. There are textbooks, medical-ish guidebooks, and the occasional memoir to turn to … but no book that collects personal experiences from the many people who have parented, cared for, or been preemies themselves. Until now. In What We Didn't Expect, journalist Melody Schreiber brings together a chorus of acclaimed writers and thinkers to share their diverse stories of having or being premature babies. The stories here cover everything from life-changing tests of faith to navigating the red tape of healthcare bureaucracy; from overcoming unimaginable grief to surviving and thriving against all odds. The result is a moving, heartfelt book, and a crucial and informative resource for anyone who has, or is about to have, the experience of dealing with a premature birth.
|Publisher:||Melville House Publishing|
|Product dimensions:||6.00(w) x 8.90(h) x 0.80(d)|
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A few days after my tiny son first came home from the hospital, my exhausted brain finally remembered the books. Yes, the books! They would tell me what to do! I cracked open What to Expect the First Year—and immediately I started bawling.
My very premature baby faced a range of complications. His heart was failing, making him take about twice as many breaths as normal. Breastfeeding exerted him too much; instead, he was fed through a tube threaded through his nose. Often, his milk meals came right back up again when pressure from his swollen heart pushed against his stomach; I was terrified of leaving him alone for even a moment in case he choked on his vomit again. He was taking a host of potentially dangerous medications, and our lives revolved around appointments with specialists and his upcoming open-heart surgery. His diaper bag was packed with medical records—hospital transfer and discharge papers, notes on medications and side effects, instructions on feeding and following up with specialists.
None of this was what we had expected.
When my water broke at twenty-seven weeks and four days, everything changed. The drive to the hospital was nothing like I had anticipated for the past seven months—my belly was not enormous, I was not wracked by contractions. My husband drove nervously, cautiously, as fast as he could. The car was eerily silent. I kept my fingers spread over my stomach. Not yet, I told the son within. Hold on just a little longer. Please, baby.
After checking into the hospital, I settled into strict bed rest and began consulting with neonatologists about their plans for our baby’s care once he arrived. There was so much we were learning on the fly; so much we never thought we’d need to know, now filling our heads and our hearts. Although we hoped he would wait—every day in utero was comparable to three days of growth and development in the neonatal intensive care unit (NICU), we learned—we knew the baby would not be full-term; if by some miracle the pregnancy reached thirty-four weeks, when his lungs and brain and body would be nearly mature, I would be induced in order to avoid infection and other complications. It was unnerving to know ahead of time he was going to be premature, while at the same time knowing there was nothing we could do to make his entry into the world any safer or less complicated. All we could really do was hope that he would wait. Just a little longer.
And he did; unlike the majority of pregnancies in which the water breaks early—a condition known as preterm premature rupture of membranes—my baby waited a full eighteen days. He was born twenty-nine weeks and six days into the pregnancy, and he was immediately taken to the NICU, where he would stay for more than two months.
There was nothing in the usual parenting books about how to address needs like his. On the contrary, those baby books were a painful reminder of the sharp turn our path had taken, and how far from the “normal” milestones we were drifting. For the first time in my life, books had failed me. I struggled to find stories that resonated with me—stories that would show me and my husband and our families a path forward in such a harrowing time. I felt intensely alone. Books had abandoned me, so I abandoned them; I put them back on the shelf, spines uncreased and pages smooth. It was another way in which this whole experience wouldn’t go the way we had planned. We would simply have to go it alone.
But, I soon discovered, we were far from alone. Support and encouragement poured in from all around the country and the world; friends and family visited the hospital and our home as often as they could. Many people had no idea what to say or do in the face of premature birth and all of the complications that surrounded it, but that was okay; simply having them there, or reading their messages of love, helped more than we could ever tell them.
But there were others who reached out to say that they had some experience with preemies—a cousin or sibling or they themselves were born too soon. I had not realized how deeply prematurity had touched so many people’s lives. Statistically, it made sense; one in ten babies are born early in the United States, so many people experience it in some way. Gradually, I patched together a network of friends who had been through this before, people I could message in a panic at ten in the evening or commiserate with at four in the morning. And I joined online groups with names like Preemie Friends and NICU Moms, learning terms like “tubie baby” and “heart warrior” and hearing even more heartbreaking and inspiring stories. These disparate voices helped us more than medical explanations; each distinctive viewpoint reassured us that we weren’t the first to go through this—that there was light at the end of the tunnel.
Of course, the medical explanations were still important. I read the relevant portions of medical books on premature birth. I learned about chronic lung disease and developmental delays, about complications and fatality rates, about the alphabet soup of conditions and complications—RSV, RDS, IVH, PDAs (which are not public displays of affection, it turns out). But as a rule, I stayed as far away from these books as possible, only looking up certain terms and conditions—because the more I read, the more panicked I became about all of the many ways my little baby was vulnerable in this world. Far from providing relief or a sense of normalcy, these books usually only brought more fear. They were atlases of everything that could go wrong, compendia of potential catastrophes. I knew there were a few memoirs out there about babies born even smaller than my son, but I couldn’t bear to read a whole book. What if that baby had needs nothing like my son’s? What if something went wrong with the baby in the book—or what if she was fine, and it was my son who was unlucky? I was worried I would commit to a book and feel even worse as the baby’s health yo-yoed, and also . . . what new parents had time to read a whole book, anyway?
I dreamed of a collection that spoke to our situation—a book I could dip in and out of, flipping to the most resonant and applicable stories for us, a sort of Choose Your Own Adventure for navigating the NICU and beyond. I wanted to put our network of preemie voices into book form so other parents would not have to search as long as we did to find their people—to hear of others like them and how they dealt with the many challenges of early birth. Instead of turning to an atlas of fear, I wanted to provide a road map for getting through this and into the good part—the part when your baby smiles at you for the first time; the first day of freedom from the feeding tube or oxygen supplementation; the doctor’s visit where they finally land on the growth chart; even the day when your grief over tremendous, unimaginable loss feels just a little bit less overwhelming.
Ten percent of babies are born prematurely in the United States—that’s 400,000 families who go through this every year. But that one word, “preemie,” encompasses a range of medical and cultural experiences. Even the terms used to describe prematurity are not set in stone, varying from hospital to hospital. In general, however, “micropreemie” usually describes babies born before twenty-six weeks, and “extremely premature” is used before twenty-eight weeks. A birth is usually considered premature before thirty-six weeks, but it is full-term between thirty-nine and forty weeks, leaving some strange gaps. Between thirty-six and thirty-seven weeks, a baby is “late preterm,” and between thirty-seven and thirty-nine, “early term.” All of these categories can get pretty confusing, and that’s just the start of it.
Gestational age, or the number of weeks at which a baby is born, is important because it often plays an outsized role in how newborns fare. The earlier babies are born, the more challenges they face, from surviving the first few weeks to longer-term illnesses and diagnoses. However, medical advances in the past few decades have ensured that many, many more preemies than ever before survive and thrive.
There are also racial disparities before, during, and after pregnancy. For example, black parents give birth prematurely 50 percent more than white parents in the United States. Each year, 13.6 percent of African American births happen early, compared with 9.0 percent of white births. Hispanic and Indigenous parents give birth early at higher rates as well—9.4 and 11.3 percent of the time, respectively. The reasons for this are complex, but the accumulated stress of racism inflicts great harm on mental and physical health, and the discrimination frequently extends to medical treatment. Furthermore, research has shown, babies of color immediately begin facing racial discrimination in NICUs across the country.
The essays in this book reflect some of the diverse circumstances and experiences around premature birth. The contributors speak to the importance of recognizing and supporting good mental health, including postpartum anxiety, depression, and trauma; the significance of faith and community; making weighty choices with limited information; approaching loss and grief; and strengthening relationships with partners, friends, family, and health workers. Throughout the collection, they offer practical advice on raising a premature baby, navigating adoption, recognizing developmental delays, managing health insurance and financial decisions, and moving from guilt and blame to realizing that no one knows your child better than you. No book can tell every story, but I hope this is the starting point for sharing how prematurity affects all of us—and how we can help preemie families (and their loved ones) navigate the difficult but often also amazing time of welcoming a new child early.
These essays speak not just to premature children and their parents, but also to grandparents, aunts and uncles, cousins, and friends looking for answers and trying to find others’ stories. They also provide another way for medical staff—doctors, nurses, specialists—to understand what families are going through and how best to communicate with and support them. (After all, it’s not just the parents who deal with premature birth.) It is a reassuring chorus of the voices of preemies, family members, friends, and medical practitioners themselves.
What I wanted most after having a preemie was to be seen—to have our struggle to survive recognized, to feel a little less alone, to see our experiences reflected wherever I could find them. My hope is that the diverse and wide-ranging stories here will help those 400,000 other families through one of the most difficult—and beautiful—times in their lives.
Table of Contents
Introduction Melody Schreiber xi
1 Miracle Baby Becky Charniak 3
Premature, rupture of membranes (21 weeks)
2 Situationally Broke Ashley Franklin 17
Making personal connections
3 You're So Lucky Suzanne Kamata 25
Living in another country (Japan)
Connecting with in-laws and hospital staff
4 What Genetics Research Doesn't Prepare You For: Premature Twins Dan Koboldt 44
Heritability and genes
Using pulse and oxygen monitors
5 The Other Side Sara Cohen 53
Two premature births
Level-4 NICU nurse
Guilt and grief over what could have been
6 Monstrous Anne Thériault 63
Anxiety and inclusive thoughts
7 New Year's Blessing Shawn Spruce 71
Role of fathers and men
The way time stops and speeds up with a preemie
8 The Still, Small Voice Kelsey Osgood 80
Trusting your instincts
Making difficult decisions with limited information
9 My Cross-Continental Miracle Rep. Pramila Jayapal 100
Equitable medical care and insurance
Citizenship and immigration (India)
Postpartum depression and post-traumatic stress disorder
10 What We Made Sarah DiGregorio 111
Breastfeeding, pumping, and feeding infants
Online networks and support groups
Connecting with other preemie families
11 Mama Knows Best? Melody Schreiber 119
Heart failure and fast breathing
Learning how to parent with an audience
Becoming an expert on your preemie
12 Aspirations Jonathan Freeman-Coppadge 137
Aspirating liquids and feeding issues
Finding community and connecting with other parents
13 Simon's Story Megan Walker 149
Loss and grief
Learning how to speak up, ask questions, and prioritize needs
14 An Aunt in Your Corner Maria Ramos-Chertok 167
Support from extended family
Loss and grief
Countering from a distance
15 What I Carry Tyrese Coleman 174
Necrotizing enterocolitis (NEC)
Post-traumatic stress disorder
16 Destination: Okay Janine Kovac 181
Linguistics and language acquisition
17 Past the Limits Manuel Hernandez 195
Immigration and naturalization (Colombia)
Finding purpose in life
About the Contributors 203