You might see my toddler eating French fries for lunch and assume she’s a typical picky eater being indulged by her weary parents. The truth is she is in feeding therapy and occupational therapy twice a week to develop oral motor skills and overcome sensory aversions that limit what she’s willing to eat. Lizzie was only a few hours old when an alert neonatal nurse noticed that she turned blue while eating. She spent two weeks in the Neonatal Intensive Care Unit while a team of experts tried to figure out how to feed her without drowning her. How is that time in the NICU connected to my daughter’s resistance to new textures and sensations today? It’s a question I’ve been asking for two years.
More than once, I've heard therapists or nurses make the connection between Lizzie’s NICU experience and these sensory issues. Is it any wonder? She missed out on the quiet, dim environment of home for the first few weeks of her life, and instead slept under a blanket of bright lights, beeps, and crying from other babies. The blaring alarms, noisy equipment, and distressed infants rattled my nerves — how must they impact the baby who has only just left her muted watery cave?
Premature babies are faced with a variety of stimuli that they truly are not supposed to be exposed to until about 40 weeks gestation.
Postpartum complications meant I didn’t hold my daughter for her first 36 hours in the world, and even then, we were each wrapped in layers of scratchy, sterile hospital textiles. She spent her first two weeks swaddled in a plastic box rather than experiencing the constant movement and sensations of being lovingly passed around by family. Her environment was not dim and soothing, it was bright and bustling. The NICU experience can be startling, confusing, and traumatizing to parents and babies alike.
In the NICU, most of a baby’s early oral and sensory experiences are negative. Compare the experience of a typical newborn with a NICU baby.
Speech language pathologist Melanie Potock worked as a NICU feeding specialist for years and now coaches parents of picky eaters.
“Premature babies are faced with a variety of stimuli that they truly are not supposed to be exposed to until about 40 weeks gestation. Children who are born prematurely are also at high risk to have challenges with auditory, tactile and vestibular processing, said Potock, co-author of Raising a Healthy, Happy Eater: A Stage-by-Stage Guide to Setting Your Child on the Path to Adventurous Eating. “When we consider that our sensory system plays a significant role in our ability to coordinate suck, swallow, breathe rhythms for breast and bottle feeding and learning to enjoy solid foods, it’s clear that premature babies are likely to develop feeding disorders.”
During our NICU stay, it was clear that Lizzie ate more easily while her father fed her. He was the calmest, most comforting option. I was a terrified mess, and nurses were less patient, more results oriented. That meant Lizzie’s feedings were often given by nasogastric tube when she was slow to accept a bottle.
My first daughter Mamie eagerly accepted homemade purees starting at four months of age. By 2, she was an adventurous eater with a mature palate. I expected the same of Lizzie. But those first few attempts, she gagged and sputtered, pawed at her tongue. I tried and tried for months to get baby food into her mouth, having no idea that her reluctance and my pressure were creating even more negative oral experiences for her to overcome.
She started physical therapy at 19 months because she was not yet walking. Only then did we all connect the dots between her limited diet and oral motor development. I also thought her unwillingness to touch foods, sand, or play doh was just a quirk, not knowing sensory aversions could limit a child’s neurological development — or that they could be treated through therapies.
Now we are in the midst of months (or years) of speech therapy and occupational therapy to overcome her sensory aversions. There has been blessed progress as her therapists rewire her sensory connections.
One recent afternoon, Lizzie hovered over my chicken panini at lunch.
“Bite! Bite!” she said.
I offer her a pinch of bread.
I gave her a piece of chicken with a thin coating of pesto. She ate that and a dozen more bites of differing ingredients, flavors, and textures. I was so proud of her, I cried. I posted on Facebook. I jumped to tell her speech therapist that afternoon. Later, the therapist reported Lizzie had eaten dried strawberries (a first) and mashed bananas with her fingers (very unlike her). I celebrate her achievements at 2 and a half years old and scold myself for comparing her to other toddlers.
The root cause is the situation — a baby born early who must learn to interpret sensory input from a big, sensory-loaded world.
As a mom of a kid with delays, I'm always looking for why? The story I tell myself is that early negative feeding experiences plus delayed oral motor development have resulted in Lizzie’s current challenges. The real root of my question is "How did I cause these problems, and what should I have done differently?" I presented that question to Potock, and she was reassuring.
“After working with thousands of families, I can say that I’ve never met one single parent who caused a feeding disorder in a premature baby. The root cause is the situation — a baby born early who must learn to interpret sensory input from a big, sensory-loaded world, while possibly struggling with physiological and motor challenges,” she said. “That little baby will get support from medical staff and most of all, his loving family. Over time, the physiological issues that accompany an immature gut may be resolved and motor skills may slowly be improving, but baby has learned that eating is hard. Plus, when we have a baby with so many needs that we never expected, we parent that child differently than we ever expected! There is more worry, more stress, more ups and downs.”
She encourages parents to focus on moving forward and building a team to support baby’s development.
What I Wish I Had Known
If I had been empowered to advocate for my family, if I had not been crippled by birth trauma and fear for my daughter’s health, if I could travel back in time to when my daughter was a newborn, I would take with me the Neonatal Integrative Developmental Care Model published in Newborn & Infant Nursing Reviews in 2016. The model is made up of seven neuro-protective core measures: healing environment, partnering with families, positioning & handling, safeguarding sleep, minimizing stress and pain, protecting skin, and optimizing nutrition.
Since my daughter’s birth, I’ve learned that these measures can protect a newborn’s development in the NICU:
- A single family room for low-risk infants in NICU care. Being separated from your new baby is devastating. In fragile cases, it may be unavoidable, but I believe sharing a room with my daughter would have improved outcomes for both of us. At the very least, we could have been provided a quiet comfortable space to care for our child while still having access to nurses.
- Skin-to-skin or “kangaroo” care. The option of kangaroo care was never offered to me or my husband. In fact, visitor protocols in the unit discouraged close contact. The benefits of kangaroo care for baby’s vitals and development are proven. I can’t help wondering how we might have eased her early days if we had been encouraged to have more contact.
- Following behavioral cues and sleep/wake cycles instead of administrative schedules for the sake of efficiency. NICU nurses follow a regimented schedule in order to assure each of the babies in their care are attended.
- Minimizing interruptions and procedures. Because I was not with her 24 hours a day, my daughter was put through stressful procedures and examinations that I might have declined given the opportunity. I knew that each health professional who assessed and treated her had good intentions, but I wish I had been there to coordinate and protect her from disruptions that not critical and possibly damaging to her development.
The Neonatal Developmental Care Model includes pages of recommendations for creating the most supportive environment for NICU babies — from infant positioning, to parent encouragement, to lighting and scent guidelines — which the authors claim “support optimal synaptic neural connections, promote normal neurological, physical, and emotional development and prevent disabilities.”
What if? What if I could have walked into the NICU with this as a manual and implemented as many of the strategies as possible given the hospital’s established system? It’s impossible to say whether we’d still be chasing developmental milestones through toddlerhood. But understanding how the NICU could have impacted her little developing brain empowers me to learn more about what she and her brain are going through now.
After a very frustrating first birth experience, this Deaf mother wanted a change. Will the help of two Deaf doulas give the quality communication and birth experience this mom wants and deserves? Watch Episode Four of Romper's Doula Diaries, Season Two, below, and visit Bustle Digital Group's YouTube page for more episodes.