Your Story: The Other Side

As an OT in the NICU, I work with very sick and premature babies and their families. I teach the staff and parents about developmental care, address neurological and musculoskeletal problems, and specialize in dysphagia by performing MBS studies and by teaching parents how to feed their infants.

I never imagined that I, too, would go through a similar experience. My second child was born at 36 weeks gestational age, barely premature. I knew, however, that something wasn't right shortly after birth. Drew was an extremely poor feeder, experienced transient tachypnea, and had bloody noses birth-3 months. He also had a sudden onset of severe reflux and dysphagia at 3 months of age.

17 visits to his pediatrician before his 6 month well-check, but I was told I was being a paranoid mother (by Drew's pediatrician) because I worked in the NICU. Drew's reflux got so severe that I put him on a reflux wedge that I use for my GER babies in the NICU. Drew 's reflux was much better when he was elevated; however, he would hyperextend his neck and retract his shoulders.

At 6 1/2 months, Drew stopped eating and was urinating blood. I rushed him to Children's Hospital of Dallas, where he was diagnosed with malignant liver cancer. After several transfusions, Drew was finally stable enough to go to surgery for a liver biopsy. We found out Drew had cirrhosis of the liver, but not cancer, and he was immediately placed on a transplant list.

Drew was finally diagnosed with a rare metabolic disease, Tyrosinemia Type 1, which is somewhat similar to PKU [phenylketonuria, a genetic disorder in which the body lacks the enzyme to metabolize phenylalanine]. After 7 months on the reflux wedge and because Drew had an enlarged liver, his shoulders became severely retracted. Drew spent a month in the hospital and 6 months on the transplant list. He is STILL going to PT to address his shoulder retraction and poor musculoskeletal alignment.

Two wonderful things have happened as a result of Drew's illness:
1) I have created a reflux wedge that is orthopedically designed to promote shoulder protraction and neck flexion. It is like sleeping "on Mom's chest." The RES-Q Infant Wedge is now patented and trademark pending, and is being used in several local hospitals and rehab departments. You can get more information about it from The Medicine Chest at Presbyterian Hospital of Plano (TX) at 972-981-8445.

2) When Drew was sleeping at the hospital, I wrote a proposal for a NICU volunteer group. "Kangaroo Krew" is a group of volunteers from the junior league of Plano, TX. It is just starting it's 4th year in our NICU. Members provide "survival bags" with snacks and change, provide meals for the parent support group and staff, decorate our unit for seasons and holidays, visit ante partum mothers with activity carts, assist at our annual NICU reunions, and rock stable NICU babies.

The best outcome of this story is that Drew is now off the tranplant list because of a drug that blocks toxins from harming his liver. It is an herbicide that costs nearly $8,000 a month. Drew is also on a special metabolic formula and PKU diet that restrict the amount of protein he eats. We call it the anti-Atkins diet.

Drew is my miracle baby. Because of Drew's experience, I have had the pleasure of helping so many other babies who are miserable with reflux. Knowing that my wedge enables GER babies (and parents) to sleep easier in a proper orthopedic position gives me a real sense of accomplishment. Drew is now 3 years old and thriving. We are fortunate that our son has a treatable (and expensive) metabolic disease. Patients with Tyrosinemia Type 1 either died or were transplanted 13 years ago.

-- Robynne Elkin, OTR
Plano, TX

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Tell Us Your Story!
ADVANCE Online is seeking stories about the best part of OT - a challenging diagnosis, a tough decision, or that moment where you realize you've truly touched a patient's life. We want to showcase your talents and experiences. We'll choose the best stories to appear in our web edition. And if we choose your submission, you'll also receive $25!

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