How a tiny baby learned to eat

The Feeding Disorders Clinic of the MCH Pediatric Feeding Program ends the nightmare

By Christine Zeindler

At a birth weight of 1lb. 15oz. (850 grams), Zola was an unimaginably tiny baby. Her parents knew Zola would be born small; she was diagnosed with intrauterine growth restriction or IUGR (a condition where the baby does not grow at the normal rate in the uterus.) However, they weren’t prepared for how this complication would turn the next few years of their lives upside down. Zola’s condition made it almost impossible for her to eat and she needed to be tube fed. After almost two years of a grueling bi-hourly feeding ritual, a new milestone was reached. Thanks to her parents’ determination and assistance from the innovative Montreal Children’s Hospital’s (MCH) Pediatric Feeding Program, Zola finally took her first spoonful of food.

“We went from a nightmare to a sweet dream,” says Zola’s mother, Dina. “The Feeding Disorders Clinic changed our lives.”

Typically, IUGR babies do not have an appetite, and Zola was so weak she could not breast-feed easily. Initially mom’s breast milk and technique were blamed, but it soon became clear to MCH Neonatal Intensive Care Unit staff that Zola just wasn’t capable of eating. She was put on a feeding tube and later diagnosed with severe reflux. After three months in the hospital, the tiny baby and her tubes were sent home.

This is when the problems got even worse.

“When we came home, I noticed Zola would vomit, as much as 20 times each day and she was in severe pain. We fed her almost every two hours, and we all slept even less. The whole situation was very difficult. My end-goal was to get Zola off the tubes. I just couldn’t accept that she would be tube-fed for life,” says Dina.

Finally, after numerous consults, persistence and research, Zola, Dina and her husband, Eric, landed on the doorstep of the MCH’s Feeding Disorders Clinic.

“I was initially reluctant to go,” says Dina. “I didn’t know much about the Clinic. I thought feeding disorders were anorexia and obesity.”

“I wanted someone who could shoulder this challenge with us and teach us how to cope. After a few minutes of discussing our situation with psychologist Dr. Catherine Zygmuntowicz, I knew we had come to the right place. The Feeding Disorders Clinic provided the support we needed. We had someone who understood what we were going through, from our emotions to Zola’s development.”

The Pediatric Feeding Program is a newly-established program comprised of the Feeding Disorders Clinic, the Swallowing Disorders Clinic, and the Intensive Feeding Unit. The program, unique in Quebec, provides an interdisciplinary approach to the assessment and treatment of feeding disorders. The uniqueness lies in its variety of services, some of which have been available for the past 20 years, and others which are in the process of being established. Led by Dr. Maria Ramsay, the MCH feeding team includes experts from psychology, nutrition, occupational therapy, and pediatrics. The team’s approach is family centered, working with the parents to develop specific goals to improve their child’s feeding abilities and mealtime behaviours.  A primary goal is to establish feeding patterns and mealtime behaviours, which can be maintained by the caregivers in the home and in other environments. Since the inception of the Feeding Disorders Clinic in 1988, more than 1000 patients have been successfully treated. The Pediatric Feeding Program provides services primarily to children with a variety of medical problems, mostly in the age range from birth to six years, though services are available until the mid-teens. A continuum of clinical care is provided with inpatient consultations and outpatient services.

“Our goals are to reduce tube feedings, hospital visits and difficult mealtime behaviours, resulting in an enhanced quality of life for the children and their families,” says Dr. Ramsay. “We are continually encouraged by the progress of children like Zola, who eventually lead normal lives. Receiving additional governmental funding for this service is an important and much needed validation of our work and patient needs.”

 Zola, who recently turned six, is still participating in therapy but now enjoys eating.  Her favourite food is ice cream.

“This is an on-going process, which is getting easier and easier,” says Dina. “Although, mealtimes take an hour, and Zola takes mini-bites, they are stress free and fun family times. We are hopeful that by the end of the year, she will be eating like other kids her age.”

“A few years ago, we would never have imagined that this progress would have been possible. Without the Clinic, we would have never made it this far.”

To parents newly faced with a Feeding Disorder, Dina advises, “Never give up.”

To find out more, visit Pediatric Feeding Program or call 514-412-4400 # 22334.

Worried about a possible feeding problem?
For examples of what your child may be comfortable eating based on their developmental level, click on the title below (PDF format).

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