C.S. Mott Children's Hospital Digital Fundraising wrote -
Nourishment is one of the most fundamental needs of a growing child, and a breakdown of that primary exchange is heart wrenching and dangerous. Even in a plentiful society, feeding disorders- extreme food refusal caused by a combination of medical, developmental and behavioral factors- can impact a child’s ability to survive and thrive. Faced with the daily stress of seeing their child struggle, families feel hopeless, guilty, and often desperate.
One of the few hospitals in the country staffed with specialists in feeding disorders, The University of Michigan C.S. Mott Children’s Hospital has witnessed the impact on the most medically and developmentally compromised children. The Interdisciplinary Feeding Program at C.S Mott Children’s Hospital provides a comprehensive program tailored to the needs of each family on an inpatient and outpatient feeding services ranging from infancy to school age.
They work with children who have medical diagnoses such as congenital heart disease, prematurity, short bowl syndrome, autism, and many others. This program has taken off and is in high demand. The average family may wait as long as 20 months for an initial evaluation.
The goal is to provide funding to reduce the waiting list by helping to supporting a Post-Doctoral Fellow who can see patients under the mentorship of Dr. Amy Drayton.
Victoria Lick’s STORY
Our daughter Victoria J. Lick was born on April 17, 2013, 4 weeks premature, at 4 lbs. 10 oz. and at 2 days old, she underwent her first surgery. Victoria had intestinal atresia/multiple bowel obstructions, resulting in the removal of 19 cm of her intestines. Her final diagnosis: Short bowel syndrome.
From birth, Victoria’s feeding regimen included 24-hour regimen of TPN via central line, or Nasogastric Intubation (NG tube) or the combination of TPN via PICC line or TPN via central line. As she progressively become dependent of TPN, bottle-feeding had become nearly impossible. Due to the TPN dependency, Victoria did not progress as a typical child would have, resulting in the lack of developed mouth strength, stamina, tongue placement, and desire to eat. Her digression of feeding led to cessation of speech, along with oral aversion, inadequate weight gain, and failure to thrive. Leaving us as new parents with few answers or places to turn for help.
Although unsuccessful, we would continually sit Victoria down to eat breakfast, lunch, and dinner. We would have her watch other children eat, and we watched countless YouTube videos on feeding therapy and feeding techniques. Encouragement of eating by “starvation” was out of the question, because she was no longer taken anything by mouth.
After many months of waiting, we have received a surprising phone call from Dr. Drayton’s feeding therapy clinic to come in for an evaluation and with no guarantee of post evaluation therapy. When we met Dr. Drayton, Victoria has not taken anything by month for about 3 months, she had not spoken a word, her hard-earned “nutritional reserves” were depleting, and her weight started to decline.
Dr. Drayton and the entire feeding therapy clinic provided us with systematic instructions that we were able to implement after every feeding therapy session. Every therapy included introduction of a new food, different texture, or working on foods that were difficult and caused us to stall our progression. Dr. Drayton and the clinical staff took a holistic approach to Victoria’s recovery. They have provided us with necessary tools and guidelines beyond the feeding needs. As time progressed, Victoria started to take small amounts of food, which progressed into full nutritional meals. Victoria went from refusing to open her mouth to humming to finally again catching up with her peers and making first words.
In January 2016, Victoria graduated from Dr. Drayton’s feeding therapy, and now, at 3.5 years old, Victoria is flourishing into a typical toddler.
Dr. Drayton’s feeding therapy clinic has given us a new start, and is the sole reason we are no longer battling the effects of short gut syndrome. We are so grateful to have met such a wonderful team of therapists led by Dr. Drayton, and to be able to enjoy our child in the environment of our home.
Our wish is that other families in our situation are able to quickly experience the same opportunity and outcome.