For families managing infant reflux, colic and other gastric issues, it can feel like a full-time job.
But what if it really was your full-time job, that became your life’s work and passion?
Robynne Elkin, a pediatric occupational therapist who has worked in the neonatal intensive care unit for 20 years, is a feeding specialist for infants who have dysphagia (feeding difficulties) and reflux.
She is also the co-founder of the RES-Q Wedge along with Dr. Craig Troop and his wife Rozlyn Troop, dietician. Robynne’s son Drew, now 15, almost died as an infant and was the reason the RES-Q Wedge was created. Drew has severe GERD and went into liver failure at six months of age before he was diagnosed with a rare metabolic disease. He has had to manage GER his entire life, so she has lived the life as a reflux mom.
RES-Q Wedge has been used by parents throughout the world since its launch in 2003 but their true calling is combining their areas of expertise to help other parents who have infants with reflux and other health issues. Their wedge is also used to help position infants who receive g-tube feedings upright for better gastric emptying.
With safe sleep issues in the spotlight, Robynne was kind enough to share her thoughts and insight on critical topics for today’s parents and caregivers with us at Down With Spitup.
DWSU: What are the biggest risks for parents/caregivers dealing with reflux, ear infections, etc.? Especially concerning safe sleep.
Robynne: We all know that elevation is key when we are dealing with reflux. We have studies that prove elevation helps to keep the acidic stomach contents down so there is less irritation of the esophagus, less chance of aspirating stomach contents, and improved ability to sleep. Who wants to lie down head of bed flat after eating Thanksgiving dinner? Adult GI's even suggest patients sleep with elevation of the head of bed to help alleviate pooling of gastric contents in the esophagus, which in turn makes us more susceptible to esophageal cancer, which is highly prevalent in persons with chronic GERD.
Babies with moderate to severe GERD are at higher risk to develop ear infections and pulmonary issues. They typically dislike sleeping head of bed flat on their backs as recommended by the Back to Sleep initiative created in the early 1990's, and regularly preached by the AAP due to the severity of their reflux and because of pressure in the eardrums and increased congestion when lying flat. Wouldn't you if your last meal was swirling in your throat and constantly causing irritation, you had intense pain in your ears, or you had difficulty breathing due to nasal congestion?
The babies who need elevation for improved sleep are often the exception to the rule, as are infants with laryngomalacia or craniofacial anomalies, meaning that they need elevation in order to breathe better and to sleep more safely. We are seeing pediatricians or pediatric specialists recommend actually elevating the head of the bed and sometimes prone or tummy sleeping for the safety of these babies with conditions that can make them more susceptible to SIDS or aspiration while sleeping. All other babies should adhere to the back to sleep recommendations from healthcare providers.
DWSU: What do you see and experience on a daily basis in your work?
The RES-Q Wedge was invented primarily because of my experience with my son Drew, who often would awaken me choking on reflux at night. It was terrifying for me, even as a pediatric OT.
Robynne: In addition, I work with preemies daily and most of them have reflux. It's painful to watch anyone's infant struggle with reflux pain to the point where eating is not enjoyable, and watching parents struggle with trying to feed a baby who doesn't want to eat is heart breaking. Mostly, these babies cannot sleep well, which is important for brain growth and maturation. If a baby is unable to sleep, nor are the parents. Sleep deprivation is a normal part of being a parent in early infancy.
However, if you cannot soothe your baby or help them sleep without pain, it involves the whole family. Extreme sleep deprivation can be very trying on the entire family.
DWSU: What advice do you have for parents, families, communities that need to educate about these conditions, as well as the sleep risks involved?
Robynne: Pediatricians and pediatric health care professionals warn parents about using commercial positioning devices such as swings, car seats, and bouncers for sleep. Infants should sleep in their cribs or bassinets with no clutter such as stuffed animals, toys, blankets, crib bumpers, etc. An infant's sleeping environment should remain bare, with mobiles or cause-effect toys out of the reach and attached high on the cribs. The AAP recommends placing your infant in a sleep sack that fits loosely at the hips to prevent hip dysplasia.
If you are swaddling your infant in a blanket, the blanket should be below shoulder level with either your baby's arms out or gently swaddled flexed up to the chest in midline, or the middle of your infant's body. Swaddling with arms extended downward is not recommended. Do you sleep with your arms in a straight jacket?
Hands close to face is a nice self-regulatory (or comforting) behavior for all babies. Babies also do not need hand mittens. Use a nail file to make sure your baby cannot scratch his face. Infants like to suck on their hands and touch their faces because it is soothing.
When your infant presents with moderate to severe GER, sinus/ear infections, or pulmonary congestion, ask your pediatrician about use of an FDA registered infant wedge to help alleviate symptoms and allow your baby to rest more comfortably. You can find reputable reflux wedges for infants on the internet. Some are considered medical devices if FDA listed, and me be covered by your insurance with a proper diagnosis.
DWSU: What is the RES-Q Wedge and how does it help preemies, newborns and infants?
Robynne: The RES-Q Wedge is the first reversible and orthopedically designed medical device on the market. We are FDA registered, and make it possible for babies with reflux and sleep disturbances to sleep elevated on their backs or stomachs with proper elevation to 30-45 degrees, which is reflux treatment protocol.
We are also orthopedically designed to enhance proper musculoskeletal alignment and head molding. Our healthcare professionals have designed the tummy side of the wedge with a curvilinear arch, like mom's chest, as that's where most of our irritable babies prefer to be when their reflux is acting up. The back sleeping side of the wedge has an actual "nest" in it to keep babies contained with a design that assists with proper head molding. The biggest plus to our design on both sides of the wedge is that it allows for good trunk and hip extension, which enhances gastric emptying.
Babies who are placed in car seats, bouncy seats, swings, and other infant positioners are typically flexed at the hip, which truly impedes gastric emptying and can actually worsen reflux. In addition, these babies often stay in these positioners and can develop plagiocephaly (head flattening), which can lead to the need of expensive head helmets, which are often not covered by insurance companies any longer. We are also unfortunately reminded too often of infant demises in positioners such as the ones more recently in the news.
Special thanks to Robynne for her time and incredibly valuable information. You can learn more at https://www.resqwedge.com/ and their blog at http://blog.resqwedge.com. My only regret is that I didn’t meet Robynne earlier in my parenting life, but my hope is that this information can get in the hands of families, caregivers and communities that need it most!
Please note this article is not a paid endorsement, just two passionate moms bonding over our calling to help others going through this! For more questions about positioning infants for reflux, you can contact Robynne direct at firstname.lastname@example.org. More to come from Robynne and her team in the future.
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