Heath was born February 20, 2009. He spent 35 days in the Neonatal Intensive Care Unit (NICU). Then the three of us went from this....
to this......
Now Heath is one of the happiest and most exuberant little boys we've ever seen. Although he had a tough birth (cord wrapped tight around his neck, Apgars of 0, ambulance transport from a country mouse hospital to a city mouse NICU, diagnosis: hypoxic brain injury), he is truly thriving. He's whip-smart, full of laughs, a bookworm and a jokester. He is snuggly and sweet, flirtatious and sly, he likes swings, sandboxes, Hawaiian music and typing in Microsoft Word. It takes him a little longer to reach his physical milestones, but he gets there at his own pace. The miracle of neuroplasticity means his brain has already worked wonders, healing, adapting, and remapping. He has worked like the dickens to do ordinary things like roll, crawl, scoot, and stuff french fries in his mouth.
Speaking of which, Heath used to be 100% tube fed. After being rushed to the NICU following his birth, he was fed via an array of tubes on a 24-hour a day schedule for a couple weeks. At age three-and-a-half weeks, he was not interested in sucking and was at risk for aspiration, so he got his g-tube (a cute little gastrostomy button actually, which allowed food to go directly in his tummy). Soon Heath was physically capable of eating safely, but had what some professionals call Posttraumatic Feeding Disorder. PTFD is common among many NICU babies who endured overwhelming medical procedures in the oral and facial areas at a very tender age: intubation, suctioning, ventilation, nasogastric feeding, etc. Their fight or flight reactions are still seen in their arching away and batting at those who try feed them. The answer? The babies need to be able to trust their caregivers and not be pressured to eat. In the majority of cases, there needs to be a plan for hunger-based weaning, so the children can get in touch with deep instincts they have never felt before which will ultimately lead them to healing.
Heath played with food while we ate as a family, participated in free-for-all baby picnics with other tube-fed kids (with no adult interference in eating), and in May 2010 he became an eater! Heath underwent a carefully managed two-week, home-based tube weaning supervised by Dr. Markus Wilken and Heath's medical team. He was allowed to be hungry for the first time in order to awaken his own natural instinct to eat. He overcame his trauma and is now loving life and food.
Markus is a developmental psychologist who has helped over 400 children become tube-free. He is the head of the tube weaning program at Princess Margaret Hospital in Darmstadt, Germany and runs The Institute for Psychology and Psychosomatics of Early Childhood with a colleague. We were very lucky to have Markus in Seattle to join our wonderful team and give Heath a new life as an eater!! For more on Heath's wean, click here....
