Premature Birth and the Right to Grieve
There are quite a few ways to experience loss of pregnancy. When I was expecting my own daughter, no woman ever warned me about what could go wrong during pregnancy and delivery. I was told to be wary of sharing the news of pregnancy until the end of the first trimester, but also that I was “young, with nothing to worry about.” Only three short months before I had my daughter, my cousin delivered a full term stillbirth. Unaware that loss was even possible so late into her pregnancy, she was obviously devastated to lose her son who she knew only from carrying him inside her. Family members tried to hide her loss from me because no one wanted to show me that loss was not only unpredictable, but possible.
What about the babies born significantly before their due dates, when their bodies aren’t ready to be born or even to sustain life itself? What happens then? What happens to their parents?
Few people fathom the idea that premature birth will become a part of their reality. However, in the United States, 1 in 9 babies are born prior to the 37th week of pregnancy.1 In October 2013, The American College of Obstetricians and Gynecologists redefined “full term” to be 39 weeks and 0 days gestation, and “early term” to be 37 weeks.
Babies born before reaching full term are at an increased risk for developmental delays and even death. Yes, even at 37 weeks, past what many believe is the danger point, babies are at risk for complications. One of the most common problems for premature babies is Hyaline Membrane Disease, also referred to as respiratory distress syndrome (RDS). Symptoms of RDS appear at birth, including difficulty breathing, shallow and rapid breath, or even long pauses between breaths. The lack of oxygen to the body caused by irregular and difficult breathing can create other issues for the baby, including (but not limited to) sepsis and kidney failure. In August 1963, President John F. Kennedy’s son, Patrick Bouvier Kennedy, died of Hyaline Membrane Disease when he was born five and a half weeks early (34.5 weeks gestation). Premature infants who don’t die from this condition are often left with chronic lung issues.
Hyaline Membrane Disease killed many, many, babies before Dr. Mary Ellen Avery discovered the mechanism that allows lungs to retain oxygen after birth. The discovery, and then the artificial production of the chemical surfactant, decreased the amount of deaths due to Hyaline Membrane Disease. Surfactant is a naturally occurring fluid that allows the lungs to maintain proper tension to facilitate respiration. Premature infants do not naturally produce enough of this and require a synthetic surfactant treatment at birth to help breathing. While it is still a precarious situation at birth for premature infants, death is significantly less common than it was 60 years ago.
Though survival is far more common today, all babies born prior to the gestational milestone of “full term” are still at risk for respiratory issues, underdeveloped neurologic and digestive systems, apnea of prematurity (preemies tend to stop breathing quite often), other lung complications, and the potential for life long disabilities. These disabilities can affect any organ system in the body — neurological, respiratory, intestinal, and even the eyes and ears. Long term effects can range from minor learning difficulties to autism spectrum, cerebral palsy, or chronic lung issues.
The grieving process for parents of a baby born too soon is much like that experienced by those who endure a pregnancy loss. I do not want to suggest that the losses are “the same,” but instead that premature birth ignites similar processes of grief. The experience, perhaps even the “rite of passage” into motherhood, is disrupted by the sudden and unplanned early arrival of the baby, dismantling hopes and dreams for the “perfect” birth and baby. The fragility of life is exposed, and big dreams are reduced to hopes of merely escaping the NICU alive and healthy.2
Parents of premature infants leave hospitals with no baby in tow. Mothers birth live babies but return home without them for an extended period of time. There is not a loss of life, but a loss of experience, and a liminal state of identity.3 Is motherhood simply birthing an infant? Are you a mother if you are not the one caring for the newborn and are having to ask a nurse if even touching your own baby is acceptable? The transitional phase into motherhood when your child is in the NICU is different than what a “typical” birth would provide. “Typical” births allow not only for bonding with the new baby, but the exhaustion adjusting to what life is like with a baby. A premature delivery comes with beeps and alerts of monitors, exhaustion due to commuting to and from home multiple times a day (unless you’re fortunate to live close or have other resources), and the adjustment to life with a baby is delayed days, weeks, and even months. Instead of showing off your baby to friends and family, there is hesitancy to expose the baby to the germs of the world. If anyone visits the hospital, there are multiple barriers between them and the baby. The dreams of “normal” parenting are shattered by the fact that preemies often experience long hospital stays and years of managed care by multiple medical specialties even if they are not severely disabled.
Emily Perl Kingsley wrote a poem in 1987 titled, “Welcome to Holland,” describing her experience as a special needs parent. She says that it’s like packing and preparing for a trip to Italy only to land in Holland — a place you didn’t prepare for. While parenting a premature infant is not necessarily the same as parenting a special needs child (special needs and prematurity are not synonymous — preemies can grow out of their special needs, or not have any at all) the poem is an excellent metaphor for the changes experienced. Before and during pregnancy, there are dreams and expectations of what it will be like to parent and who the future baby will be. These dreams are often crushed by prematurity and its effects. Instead of landing in Italy, prematurity sends parents on a trip to Holland: beautiful in its own right, but not the trip they prepared for.
It’s different parenting a preemie, particularly in the beginning. A little more hand sanitizer, more doctor appointments, and an infinitely increased awareness of development. Typically parents get excited when their baby first picks its head up or rolls over. Preemie parents are excited when baby can bring their hands together, because it is indicative of finding the midline and is the first cognitive milestone. (Finding the midline is a way that the brain shows organization.) Development that most commonly goes unnoticed is a cause for celebration for a preemie parent. Because preemies are born before their bodies finished maturing, development is often delayed. The body needs time to finesse the neurological system and develop a reflex often taken for granted. The rest of development – gross and fine motor, expressive and receptive language, and all the intricacies of the brain — are typically delayed to match the original due date rather than the actual birth date.
While most of us recognize the need for parents to grieve miscarriage and stillbirth, we should also understand that mothers who birth prematurely need to grieve as well. Most mothers of premature infants do get to take their babies home, although significantly after their birth days, and that should not overshadow the trauma of a premature birth and lost ideals. The trauma and shock of what most often is an emergency situation should be given adequate space and time to process. It is refreshing to see miscarriage and stillbirth coming out from the shadows and becoming socially accepted and welcomed to talk about.4 Preterm birth, like all forms of pregnancy loss, does not warrant shame or guilt, and needs an open, welcoming outlet for mothers and fathers to grieve.
This post is dedicated to all the parents of premature infants as well as those who have experienced miscarriages and stillbirths. May you each grieve in ways that satisfy your needs, and may time make you stronger.
- March of Dimes Foundation, “March of Dimes 2014 Premature Birth Report Card” (2014). Return to text.
- Gay Becker, “Metaphors in Disrupted Lives: Infertility and Cultural Constructions of Continuity,” Medical Anthropology Quarterly 8, 4 (1994): 383-410. Return to text.
- Victor Turner, “Betwixt and Between: The Liminal Period in Rites of Passage,” Betwixt and Between: Patterns of Masculine and Feminine Initiation (1987): 3-19. Return to text.
- Linda L. Layne, Motherhood Lost: A Feminist Account of Pregnancy Loss in America (Routledge, 2014). Return to text.
Naomi is a PhD student at Case Western Reserve University in Cleveland, Ohio. She is pursuing the history of medicine. Her dissertation will aim to evaluate the role of activism in the rise of collaborative care in childbirth.