Category: Infant Growth

I clearly remember the day a doctor’s news changed my life. After months of chasing my baby around with a bottle to eat an ounce at a time, I learned Alex has a rare chromosome disorder.

The neurologist enthusiastically delivered the devastating news, charmed that he was the first to solve the puzzle of why Alex’s development was delayed. Even as a registered nurse, I found his explanation confusing. My shock meant I couldn’t have processed the information even if it had been simple.

How NOT to support families with pediatric feeding disorder

As a healthcare professional, that day was one of many where I learned how not to support a family of children with pediatric feeding disorder (PFD). The news should have come from a genetic counselor, my husband should have been there, and it should have been shared with compassion.

The journey before learning about Alex’s disorder was a struggle as well. Although he was my first, I knew it wasn’t normal for a newborn to eat only an ounce at a time. What he took in, he spat up. His growth was slow, and at 9 months, he was neither sitting up nor crawling.

Our pediatrician told us to give it time, that I was a nervous new mom and that Alex was slow to grow because it was a difficult pregnancy, and he would catch-up. It wasn’t until we saw a different provider at 9 months that we were connected to a neurologist, geneticist and Early Intervention (EI) services. This too, was a lesson in how not to support families of children with PFD.

Armed with a diagnosis and therapy services, we hoped to help Alex eat more and get the calories he needed to grow and develop. Instead, we were told to try harder to feed him and to schedule weekly weigh-ins. A feeding tube was held over our heads like a threat, as if inserting one would signal our failure as parents.

By the time Alex was 18 months and weighing only 16 pounds, I nearly begged for a G-tube. When he finally got one and started gaining weight, I couldn’t help but wonder why we were encouraged to try so hard. Why didn’t he have the nutrition he needed during such a critical developmental time?

Alex’s genetic diagnosis and the PFD that came with it became a springboard for my career. I had a choice to struggle with the question, “Why me?” or do something that would make this odyssey less painful for others.

I chose the latter.

Leading research to support families of children with PFD

After completing a master’s degree in nursing education and then a doctorate in nursing, today I research PFD and how it affects the entire family unit. I’m dedicated to fixing what we went through for others.

At the beginning of Alex’s diagnosis 15 years ago, there wasn’t common terminology among physicians and clinicians. This was a focus for my dissertation because it is a big barrier to building research and supporting families of children with PFD.

It’s why I have a big affinity for Feeding Matters, who did the work to get a PFD ICD-10 diagnosis.

One of the things I’ve done with our Feeding Flock Team is to develop several parent questionnaires about feeding behavior, skill, family management of feeding, and parent and family impact of feeding. For example, on a project with researchers and clinicians at Children’s Hospital of Atlanta, we are developing an assessment of the impact of intense food allergy regiments on caregivers and households.

Our goal is to provide data to clinicians and parents to help determine whether a food allergy intervention eases the psychosocial impact that food allergy has on everyday life for parents and families. For example, new oral immunotherapy treatments for food allergies require children to take a certain amount of allergenic food and have activity restrictions every day at a specific time. Is the cost-benefit worth it? Ultimately, the child still needs to avoid the food, but should have less severe reactions if exposed to small amounts unintentionally. Are there quality of life improvements for the family? We only know if we measure this.

I’ve interviewed parents as I go through the process of developing measurement tools for PFD, and I’ve heard their stories. Witnessing what others go through and being in the position to do something about it is what gives our family’s struggle meaning.

Because of our experience with feeding therapies, I learned to ask more questions. And I learned that research for PFD must be patient-centered. Only with patients who have experienced PFD and their families at the helm can research lead to better journeys and improved outcomes for the whole family.

Not long after Alexandra Marcy’s third child was born, she knew something was wrong with her eating. From the start, her daughter, Emerson, wasn’t latching properly. “I was told at the hospital that her latching would come naturally. We tried for a few days, and I knew it wasn’t normal,” she says.

It wasn’t long before Emerson’s diapers were dry.

A doula friend suggested Emerson might have a tongue tie, making it hard for her to latch. Not only did she indeed have a tongue tie, but she also had a lip tie and a buccal tie – a cheek tie that results from an abnormally tight frenum. Emerson underwent a laser procedure on all three, and Alexandra started using a nipple shield while breastfeeding.

Even then, says Alexandra, “She’d get a little bit of milk but never enough. Any time I tried to nurse her, she’d scream.”

Those early feedings began a four-year feeding journey that’s still developing today. What began as a medical feeding issue then is today a psychological issue. The Marcy family continues to navigate the uncertain path between pediatric feeding disorder (PFD) and Avoidant Restrictive Food Intake Disorder (ARFID).

Click here to read about PFD and ARFID and how the two diagnoses can overlap.

See here why misdiagnosing PFD and ARFID can do more harm than good.

Following is their story.

One young child’s journey from PFD to ARFID

Alexandra gave up on breastfeeding early and instead pumped milk for Emerson. The baby never took more than an ounce at a time. Even then, Emerson would spill milk out of her mouth and gag. Like many parents of children with PFD, Alexandra spent most of her time around the clock pumping and feeding her daughter.

Emerson also sounded congested all the time. Her pediatrician assured Alexandra this was normal.

Alexandra wasn’t convinced, and at three months, baby Emerson was breathing strangely and seemed limp. It was RSV season, but a swab and an X-ray seemed fine. But Emerson hadn’t gained weight since her previous pediatric appointment. When Alexandra returned a week later for a weigh-in, the baby lost a few ounces. The pediatrician recommended Alexandra supplement with formula. He suggested her breast milk wasn’t fatty enough. Emerson lost more weight even with formula.

They ended up at Phoenix Children’s Hospital (PCH) when Emerson was four months old. “I saw so many doctors, who all thought her breathing and eating will be fine. We were there for over a week without any answers,” says Alexandra.

It wasn’t until Alexandra, who worked in a therapy clinic, managed to connect with a feeding therapist from her team that she got some answers. She looked over Emerson’s original X-ray of her lungs from when Alexandra suspected she had RSV and saw shadows in the image. A second X-ray showed the shadowing had gotten worse since then. This was a sign the baby was aspirating.

The family turned to a gastrointestinal doctor for answers. Emerson was diagnosed with allergies and started an animos-based formula, which helped. “Still, though, she was a terrible eater. It was hard to get 4-oz. into her,” says Alexandra.

It seemed like any time Emerson would make some feeding progress with her feeding therapist, she would get an upper respiratory infection or rotavirus that would set her back.

Emerson got an NG tube to build up her strength. The NG tube helped the baby gain weight, but Alexandra still remembers it as traumatic. “Any time it came out, I’d have to have my eight-year-old hold her down while I put it back in her. It felt crazy and sad.”

Eventually, Emerson was diagnosed with:

• Type 2 laryngeal cleft: An abnormal opening between her larynx and the esophagus that allowed food to enter her lungs

• Tracheobronchomalacia: Her weak tracheal or bronchial tubes would collapse any time she ate or cried.

• Dysphagia

“Finally, we had answers, but no way to fix it,” says Alexandra.

At eight months, Emerson transitioned to a G-tube as a long-term feeding solution. “This was so much better because I could see her beautiful face. She wasn’t gagging and throwing up,” says Alexandra.

The G-tube even helped Emerson overcome some food aversions to try solids. Alexandra added her to the months-long waiting list to get into the feeding program at PCH.

Thanks to the family’s hard work, Emerson progressed and eventually got into the feeding program. But at age three, she started to regress again. She stopped eating most of what her parents offered, accepting only four foods.

Even after three weeks in an intensive feeding therapy program at PCH, Emerson wasn’t progressing. At that point, all her medical issues had been addressed and resolved.

The hospital team suggested Emerson see a psychologist, who thought the three-year-old could have ARFID. Eventually, Emerson was diagnosed with ARFID and obsessive-compulsive disorder (OCD). She was young for both psychological diagnoses, but a child psychologist and a child psychiatrist agreed.

Emerson was treated with EMDR therapy to help her reprocess the medical trauma she experienced as a baby and toddler. “Any time she eats, she doesn’t want to feel pain, so this makes her restrictive and gives her intrusive OCD thoughts,” says Alexandra.

A psychiatrist who has worked with many children with PFD and ARFID prescribed medication, helping Emerson be more open to new foods and eat more. Things have gotten easier, but still, says Alexandra, their journey isn’t over. “She just doesn’t care about food. She doesn’t act hungry, and I have to remind her to eat.”

Alexandra hopes sharing her family’s story will help others navigate a similar path.

For more information, visit Feeding Matters’ resource page: PFD and ARFID. If you are a parent needing support, check out our family support resources

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Pediatric developmental nurse answers questions on slow growth, lack of growth, weight loss

Expectant parents have all sorts of worries leading up to birth, but feeding your baby and slow growth usually aren’t among them. You assume your newborn will suck from the breast or a bottle. When this doesn’t happen easily, bringing home your baby becomes more complicated.

Babies with slow growth, lack of growth or weight loss typically spent some time in the NICU and may even have a tube to supplement feeding.

In many cases I see, parents are sent home without a feeding plan when their babies are discharged.

What causes slow growth, lack of growth or weight loss in infants

There are many reasons infants experience slow growth, lack of growth or weight loss, which can all sometimes be called failure to thrive. Common ones include:

• Premature birth
• Trouble latching
• Reflux
• Medical conditions

I’ve seen countless overwhelmed parents caring for newborns who require extra support for feeding. This is challenging in the best of circumstances when parents have a lot of help from family and friends.

It’s nearly impossible for those with fewer resources.

Families need more support

First time parents are inundated with an overwhelming amount of new information. The learning curve for managing a newborn is significantly compounded when the baby has slow growth, a lack of growth or weight loss. This is often called “failure to thrive.”

Parents of these babies often lack all the tools and information they need to help their babies grow and thrive.

It’s my job in Maricopa County, Arizona to fill that gap.

In one telehealth visit, I spoke to a mom whose baby was born at 24 weeks and had an NG-tube. Through our conversation, I learned she had a formula prescription, but she didn’t have a feeding plan.

The mom didn’t know when to increase the amount of formula, when to offer oral feedings or even when to visit a gastroenterologist (GI). I helped her develop a plan and get an appointment. Her experience wasn’t unusual.

When a baby leaves the hospital with a feeding tube or after treatment for weight loss or slow growth, hospital doctors assume that pediatricians will ensure the baby’s feeding needs are met. Pediatricians assume the GI manages the feeding plan. And the GI often doesn’t see the baby for months.

More support for these families can make the transition to home easier.

In Arizona, any baby who’s in the NICU for five days or more is eligible for support from a pediatric developmental nurse for up to three years. This includes at least four visits a year in the first year.

I’ve seen firsthand how support is crucial for overwhelmed parents, especially within 14 days of discharge.

Customized care to help babies with slow growth thrive

The causes of slow growth and weight loss are many. This makes one-on-one consultations essential to diagnosing the problem and providing customized support.

In one extreme case, a baby was admitted to the hospital for feeding issues and weight loss. After discharge, I made a home visit and asked the mom to show me how she feeds the baby. She only had one bottle and a nipple caked with dried powder. This baby was sent to the hospital for feeding issues, but nobody assessed the mom to see what she was actually doing at home to feed the baby.

In another case, I met with a mom whose baby was discharged without adequate supplies for her baby’s feeding tube. She adjusted the baby’s formula and was adding her own mixes. She needed more adhesive to keep the NG-tube inserted, so she used adult Tegaderm. Still, the tube wasn’t staying in place. While they had already visited the pediatrician, the mom hadn’t communicated her challenges because she didn’t know any differently.

It’s these kinds of early struggles that can make developing pediatric feeding disorder (PFD) more likely, even for those children who outgrow their initial challenges. Getting these families access to early support can make all the difference.

How parents can improve feedings at home in cases of slow growth, weight loss or feeding tubes

Ask for a feeding plan
Key to helping parents deal with feeding challenges is providing better instructions when children are discharged from the hospital. NICU nurses are great about showing parents how to insert the NG tube, check placement and when to call for help.

Be sure to also ask when to increase the calories, when to visit a GI and when your child no longer needs the tube.

Get emotional support
With all the focus on feeding a baby with slow growth, lack of growth or weight loss, it’s hard to focus on self care. But it’s essential.

Moms need rest and breaks, especially those who are postpartum and are double feeding – pumping and giving bottles. Rally your support among family and friends. Don’t expect to be able to handle everything alone.

Set up a treatment space in your home
If your baby has a feeding tube, it’s important to designate a treatment space. Make sure this isn’t a crib, couch or play area. This helps your baby know what to expect, rather than fear having the tube inserted at any point in the day.

Hold your baby during feedings
Whether you’re bottle feeding or tube feeding, it’s important that you hold your baby during feedings. This helps with bonding and makes your child feel more comfortable eating.

Get in touch with Feeding Matters
If you’re struggling with feeding challenges, you don’t have to walk this road alone. At Feeding Matters, we have many resources for parents to answer questions and provide social and emotional support. One of our most helpful support programs is peer to peer mentoring, Power of Two.

Ensuring parents get support for slow growth, lack of growth and weight loss is crucial to mitigating the risks of developing pediatric feeding disorder (PFD). Not all parents will have access to a pediatric developmental nurse, home health or coordinated support between their pediatrician and a GI. It’s essential that parents get the information they need from the start, before being released from the NICU.

Babies and their parents depend on it.

Mary Anthony has been a pediatric nurse for nearly 40 years and is head of the High Risk Perinatal Program for Maricopa County in Arizona.