Empowered Preemie Moms: From NICU, to Newborn, and Beyond

By Shaana Berman

The experiences of preemie moms often detract sharply from the experiences of mothers who carry their babies to term. In fact, the surreal, clinical, and often traumatic things that preemie moms endure make their labor, delivery, and parenting scenarios seem almost otherworldly in comparison to those of “termie” mommas.

The current work describes how one preemie mom, Shaana Berman, dealt with her own premature introduction to parenthood after developing HELLP syndrome. Her son, Jax, was delivered at 34 weeks, 5 days gestation, weighing just 3 pounds, 14 ounces. As a special education specialist, Dr. Berman was shocked and dismayed when her life began to parallel her career. The NICU stay was challenging, but arriving at home was also frightening. Among other things, Jax battled severe reflux, braphycephaly, and was termed failure to thrive.

Dr. Berman battled severe postpartum anxiety and depression, post-traumatic stress disorder, and adrenal exhaustion in the aftermath of Jackson’s birth. As she shuttled her preemie to countless doctor appointments, turned away numerous invitations to parties, shunned visitors, and avoided the supermarket like the plague, the author became increasingly more isolated. One day, as Dr. Berman sat attached to a breast pump in the dead of the night, the former early childhood special education specialist began to wonder if other preemie moms were on a similar rollercoaster ride.

In order to explore this idea further, Dr. Berman developed an anonymous, online survey and posted it on several popular preemie discussion boards. To her surprise, over 50 preemie moms responded, telling their stories and confirming that preemie moms share a special bond. While every preemie mom walks a unique path with her family, there is kind of comfort that only camaraderie derived from trauma can bring. Sharing birth stories and challenges seems to be a vehicle that promotes bonding among preemie moms. Dr. Berman set out to document the stories these moms shared, in order to increase awareness regarding prematurity and the unique women’s and parenting issues that preemie moms face.

This book is divided into two sections. The first section relates the stories of ten preemie moms who had their babies during different stages of gestation (from 25-34.5 weeks). This organization is intentional, as the first thing a preemie mom often wants to share is their child’s gestational age and weight at birth. Of the 50 responses, specific stories were selectively included to portray a range of preemie ages, weights, birth scenarios, and outcomes.

Narratives were obtained by posting an anonymous survey on several preemie message boards, and on the author’s Facebook page. All names and identifying information were changed to protect privacy, and some narratives were edited for flow and clarity. The survey responses were sorted by gestational age, and then coded to extract common themes and experiences. Coding revealed several common core issues that arise during the preemie postnatal experience.

The second section of Empowered Preemie Moms outlines survival tips based on these commonalities. The work as a whole is intended to help preemie moms navigate their preemie rollercoaster rides and achieve a sense of power and control over their situations, rather than succumbing to feelings of isolation and anxiety.

• Language: English
• Publisher: Shaana Berman
• Release date: Apr 1, 2013
• ISBN: 9781301030873

Book preview

Foreword

It is not how much we do, but how much love we put in the doing. It is not how much we give, but how much love we put in the doing.

—Mother Teresa

Premature birth is the most common cause of perinatal and infant mortality in the United States. The World Health Organization has defined preterm birth as the delivery of the infant before 37 completed weeks of gestation (259 days), and it occurs in about 12.3% of the births in the United States every year. That is about 510,000 preterm births annually. Approximately 70% of admissions to the NICU are babies who are born between 34 and 36 weeks of gestation. Approximately one-third of infant mortality in the United States is directly attributable to preterm birth or as a result of complications occurring almost exclusively in the preterm infant.

In general, the survival rate for preterm infants increases from less than 10% for babies born at the limit of viability (22 weeks gestation) to greater than 90% for babies born at 28 weeks of gestation or later. The current rate of survival for infants born at 34 weeks gestation and beyond is estimated at around 98%. After 34 weeks of development, most efforts are no longer directed at prolonging gestation, and when there are complications, the threshold to delivery declines substantially.

Compared to full term infants, surviving preterm infants are at an increased risk of developing long-term, cognitive, motor, sensory, and behavioral deficits, as well as poor growth and long-term lung and gastrointestinal disorders. The Institute of Medicine has estimated the cost to society of preterm birth in the U.S. to be over $26 billion every year; this estimate does not include the entire cost of medical care beyond early childhood, nor does it include the total cost of special educational services and lost productivity for parents. While these statistics are certainly alarming, they do not fully describe the impact of having a premature baby on families. Mothers who have preemies have an entirely different labor and delivery experience than most mothers of full term infants. More attention needs address the experiences of preemie moms and on strategies that promote healthy coping and bonding.

Mothers who deliver preterm babies are often in a state of shock and denial and may find the experience traumatizing. As a neonatologist working in a busy Neonatal Intensive Care Unit (NICU), I have witnessed the anxiety and trauma a preemie mom endures firsthand. Recently, my team delivered the smallest surviving preemie ever documented in the research literature, born at just 21 weeks, 3 days, and weighing just 350 grams. Sadly, the experiences of preemie parents must often take the backseat relative to the focused attention we must place upon saving the lives of their tiny little fighters. Preemie moms often endure their own emotional struggles in silence. They may experience guilt, anxiety, post traumatic stress, and higher rates of postpartum depression. I believe that if nurses and physicians ensure frequent and caring communication and promote bonding practices such as kangaroo care and breastfeeding, anxiety and emotional trauma related to having a preemie can be greatly minimized.

Because of the complications associated with preterm infants, these preterm infants are babies are cared for in NICUs, by specially trained nurses, respiratory therapists, and neonatologists. While having a preterm infant impacts the entire family, there are very few NICUs in the United State that provide Family Centered Care, where parents are allowed to be present 24 hours a day. Too, although breast milk is considered to be the very best form of nutrition for preemies, there are even fewer NICUs located in facilities designated as Baby Friendly Hospitals, where breast milk feeds and breastfeeding is the priority for all babies.

Recently, the American Academy of Pediatrics released a statement about the benefits of breast feeding for both the infant as well as the mother. Access to human milk decreases the incidence/severity of late onset sepsis in preterm infants, and also decreases the risk of necrotizing enterocolitis (NEC), bacterial meningitis, respiratory tract infections, otitis media, and other ailments. Further, breastfeeding is associated with a 21% decrease in infant mortality rates. In addition to these significant benefits to preterm infants, there are also benefits to preemie mothers, such as: faster decrease in post partum bleeding, more rapid uterine involution, earlier return to pre-pregnancy weight, and decreased risk of breast and ovarian cancer.

Preemies often struggle with breastfeeding due to problems such as a weak suck or an uncoordinated suck-swallow. Some preemies have reflux, which causes pain during feedings and frequent vomiting. These challenges make breastfeeding very challenging for preemie moms, and NICU staff should work closely with parents during and after their hospital stay to ensure that breastfeeding is being established. Even if breastfeeding is not possible, preemie moms may opt to pump or to use donated milk.

A holistic approach that addresses the clinical and emotional needs of families is paramount to overall health of parents and their preemies. One key way to ensure caring communication between the neonatologist and parents involves a care conference. Care conferences between parents, nurses, neonatologists and ancillary departments help everyone involved understand the baby's progress and plan of care, together with parent feelings and reactions. During the NICU stay, parents become an integral part of the plan of care for the infant. Parents need to be involved in all aspects of the infant's care, from feeding, to bathing, to holding and bonding. Being an active participant in their preemie’s care can be a healing experience for both parent an infant. Parents should be considered as an active part of the care team, and should be involved in every aspect of decision making for their infant.

As a preemie mom herself, Shaana Berman offers unique insight into the experiences of preemie moms. In her synthesis of over 50 poignant preemie mom narratives, she identifies several empowerment strategies that moms who are new to the preemie experience may benefit from. This book us a useful and practical guide for any new preemie mom searching for coping strategies and for strength in solidarity, as Dr. Berman so eloquently states. The author’s desire to improve the experiences of preemie moms is admirable, and the information contained in this book is both informational and comforting. If you are a new preemie parent, I wish you the very best on your journey with your little miracle. Celebrate every milestone. Miracles happen every day, should we choose to notice them.

Farooq Abdulla MD, IBCLC

Chief Neonatologist

Las Vegas, Nevada

Author’s Note

If you are reading this book, there is a good chance you are a preemie mom, or you know someone who has had a preemie. It’s a long, challenging road that no mother ever dreams she will walk. Issues related to prematurity range from mild to severe. Some of us cry over our child’s inability to nurse, because it makes us feel so inadequate as a new mother, while some of us are learning how to use a g-tube to feed their child. Mothers of micropreemies are in another world altogether. I recognize that some of the perspectives addressed in this work may not pertain to the issues that many micropreemie mommas endure, but I still hope that this guide will still contain useful information for all mothers who deal with the NICU and beyond.

I also recognize that here are many term babies (affectionately referred to as termies hereafter!) who have significant problems. I still recall the 42-weeker who cried incessantly in our NICU. Her bleary-eyed parents would stumble in and out of the hospital, hoping that today was the day that they would be offered the golden car seat test, to no avail. Ten days into our own NICU stay, I asked the little girl’s mother how long they had been in the NICU. The response, Sixty six days and counting, sounded like an eternity to me. Some of my preemie momma friends were in the NICU a week, and some were there for over a hundred days. After a while, you begin to forget the life you once had outside the hospital walls. And if you have older children, I imagine you are feeling like you are coming apart at the seams. My point is that some of us have had experiences so traumatic that others wonder how we have endured them.

I am not sure what makes one person more equipped to handle trauma. Through my interactions with both preemie and termie mommas, I have learned that every mother handles the transition to motherhood differently. Some mommas take things in stride, and somehow become beacons of hope to the rest of us, who have had immense trouble adjusting to what is, and accepting that what we wanted did not occur. We all come with different skill sets and knowledge to help or hinder our journey. Every baby, preemie or no, is on his or her own path as well.

You may not find exactly the same scenario as your own within these pages. Your situation may be far worse than mine, or far better than one of the experiences related by the preemie mommas in this book. Bearing that in mind, I hope you find the stories and information presented in Empowered Preemie Moms to be helpful. Each preemie momma walks a slightly different road, but we walk together. My wish for all of us is that we become empowered by our adversity, and pass on our strength to our little fighters. Love and light to you all.

Shaana Berman, Ed. D.

[e-mail]

http://empoweredpreemiemoms.wordpress.com

Prelude to a Preemie Story

There are two kinds of preemie moms; those of us who knew we would have preemies and those of us for whom this experience was entirely unexpected. I fall into the latter category. Unlike my friend Beth, who had been on modified bed rest since she was twenty-four weeks along, or April, who was expecting twins, I had given the Neonatal Intensive Care Unit (NICU) a cursory glance on our hospital tours, and had tossed the brochures pertaining to pre-term labor aside. I was NOT doing that.

I had followed a healthy diet and fitness plan, had regular checkups, and for the most part, felt amazing during my pregnancy. My husband and I had even entertained the notion of having a water birth in our living room, with a midwife and doula present. Even though I was nervous about the pain, I was looking forward to that experience we all hear about: Waking up in the middle of the night to that gush of warm fluid, and racing to the hospital with my carefully packed bag and anxious husband in tow.

As it turned out, the Universe had other plans. Instead of following my carefully thought out, limited-intervention birth plan, my pesky labor ended up going completely awry. There was nothing natural about it. In fact, it almost cost me my life. I’ll get into that story a little later. The end result: I woke up two days after delivery, confused and scared. Where was I? Where was my son?

As I lay there bleeding, foggy-headed, and panic-stricken, I was told that my son had been transferred to a Level Two NICU. I didn’t know that this was considered a good thing, relatively speaking, so I immediately began to sob. I felt my world crumble and intense grief set in. This was not the experience I had imagined. I felt cheated, resentful, and weak. The frequent and uncontrollable tears continued over the next several months as my husband and I struggled to comprehend and respond to the unexpected situation, the frightening terminology, and the revolving door of medical personnel.

A year later as I reflected on our experience, I found myself wishing that there had been more resources to help me through the most challenging time in my life. As a highly trained early childhood specialist, I spoke the medical language so well that hospital staff often thought I was a medical doctor, rather than an education specialist. But, even given these distinctions, I was so overwhelmed, hormonal, and exhausted that I could hardly function amid the chaos of those first few weeks. As I watched friends with their newborns, I wondered what was wrong with me. Why couldn’t I adjust to getting less than two hours of sleep a day? Why did Jackson scream all the time? How did people do this without going crazy?!

At some point I realized that what I was going through was not a typical transition to parenthood. The weeks became months and we were still having digestive and sleep-related challenges. As I waded through each day bleary-eyed and exhausted, I started to run into other preemie moms. Sometimes I wonder if these chance meetings were coincidental at all, because these preemie moms changed my perspective and life for the better. At doctor’s appointments, and during our very limited outings, it seemed like every time I ran into another preemie mom we ended up swapping war stories.

We could barely contain ourselves as we discussed the similarities of our experiences, punctuating our narratives often with "Me too, and I went through the same thing with my son/daughter!" Moms who had endured more typical birth scenarios were supportive as well, but most just didn’t seem to understand what I was going through. I felt an immediate kinship with these other preemie moms. We were able to support each other because we spoke the same language, and had shared similar traumas. I was not alone!

One day, as I muddled about in my perpetual state of sleep-deprived stupefaction, inspiration struck me. These preemie moms I had spoken with had helped me so much by sharing their stories that I wanted to find more stories and share them back. Perhaps hearing these stories would help other preemie moms feel less alone too. So, I put my addled brain to work. Somehow, between pumping sessions, doctor appointments, and daily meltdowns due to being so tired, I developed and posted an online survey targeting the experiences of preemie moms. To my surprise, I received over fifty responses from preemie moms across the globe. From the United States, to Australia, and even the United Kingdom, these moms discussed their struggles and their triumphs.

The similarities in their stories shocked me. So many preemie moms deal with the same things, such as reflux, colic, the bradies, and more. The emotional rollercoaster rides my anonymous participants described were hauntingly familiar as well. Most of us mourn the experience we thought we were going to have. Many of us cry over spilt milk so to speak, because the majority of our tiny preemies struggle with nursing. Because many of us are prevented from that first, special bonding period when they are first born, of holding our newborn to our hearts, inhaling their sweet baby smell, and putting them to breast, we feel cheated, or we have a difficult time bonding. The mothers who shared their stories have also offered tips to help you get through these challenges. If you are a new preemie mom, or preemie mom-to-be, I just know that hearing these stories will help you too, because there is comfort in camaraderie.

The first few weeks or even months after your preemie arrives are a whirlwind. I know that getting through this difficult time would have been easier for