We were waiting to hear back the results from my 14-month-old’s endoscopy. The pediatric gastroenterologist who was caring for and treating my son had us prepared for what she anticipated the biopsy would reveal.
The prior 14 months had been exhausting, challenging, and extremely difficult as a mother and parent. The issues we faced daily since his birth included spitting up, vomiting, difficulty bottle feeding, and then refusal to eat solid foods at the time we were instructed to introduce them. Though he had struggled to initially gain weight, he somehow made it out of the “red,” and his growth became a nonissue.
The sweetest, happiest, and most loving baby became a monster when placed in the high chair to eat. My husband and I kept agreeing that maybe we should just shove a “puff” in his mouth, and then maybe he would see it tastes good. Or, maybe he needs to be shown how to take his tiny little fingers, pick it up, and put it in his mouth? Great idea! So my husband would sit there, literally, picking up a cheerio, making a huge fuss over it, and urging Austin to do the same. Fail.
We were encouraged to take a break from high chair feeding, and just continue bottle feeding and formula; as each child develops at different times, and maybe he just wasn’t ready to make that leap into texture quite yet. So, we continued feeding him what he would allow us to feed him: Yo Baby yogurt. As his mother, I was so concerned about making sure he would grow and thrive, that I started adding formula into his yogurt to ensure he was getting a sufficient amount of calories.
All I was able to keep thinking after my own struggles with food was, “Of all issues, my son has to have feeding issues.”
At 1-year-old, our pediatrician finally expressed his concern, tested him for food allergies, and referred us to a feeding specialist who evaluated him. She was sure, at that point, he had a sensory sensitivity. So each week, we sat in her office trying to make the high chair a positive experience, while attempting to add more foods into his diet. Another fail.
A month later, one problem was quickly solved immediately following one of his worst explosive vomiting episodes. Allergy testing results had come back, and it was determined Austin had food allergies, but the accuracy and severity of the results were unknown due to an insufficient amount of blood. We were rushed to a pediatric allergist who administered testing and concluded Austin was allergic to dairy, wheat, egg, peanuts, and tree nuts. We were, then, referred onto a pediatric GI.
Then I kept thinking, “Not only does my son has feeding issues, but we must eliminate major food groups from not only his diet, but our entire family’s diet, in order to help keep him safe.” This, in itself, was extremely conflicting. Through treatment and recovery through anorexia, I was advised and taught NEVER to completely remove a food from my diet; that this could result in eventual binging, or further elimination.
The phone rang, and it was her with the endoscopy results. She called to inform us that results came back from Austin’s endoscopy, and he was, indeed, diagnosed with a condition called, Eosinophilic esophagitis. As a result for being fed allergens for 14 months (milk-based formula and yogurt, mostly), his esophagus was severely inflamed, and the reason he behaved the way he did was because he was in such pain and discomfort.
My heart broke. I had poisoned my child for over a year, and then he was sick and refused to eat. “Now what?” I thought. She explained that his issues involving food are far more complex than just a having feeding therapy session once a week. On the phone, she recommended a program I was unfamiliar with: a 6-week intensive feeding program at Mt. Washington Pediatric Hospital in Baltimore, MD. As she was explaining her reasons why, I was on the computer googling the program. Tears welled up in my eyes. I felt like I was punched in the stomach. I read, “5 full days a week. You drop off your child, and he cannot see you during the day.” I sobbed. My baby had never been away from me for an hour, let alone a full day, let alone five full days a week for six weeks.
Our experience with Mt. Washington Pediatric Hospital
My husband was the calm and positive mind. He assured me it would be for the best; that Austin would never even remember it, and six weeks is such a short time in the scheme of things. After three months of being on a liquid diet to heal his esophagus, Austin should have been pain free and able to eat comfortably. But, at 18-months-old, he didn’t know how to chew, swallow, or eat solids, and if not resolved, could have had permanent health repercussions.
Austin was scheduled for a feeding evaluation at the pediatric hospital. He so perfectly demonstrated his behaviors and habits that we had been fighting for months to the professional team. After extensive discussions among their specialists, we were presented with the same recommendation for treatment: the 6-week feeding program.
I was so conflicted. I wanted my son to eat and be healthy, but I couldn’t bear the thought of leaving him somewhere, especially a hospital. Would he resent me? Would his fear and sadness have long-term affects? What if he never forgets or trusts me again? All questions I kept asking myself, while feeling extreme guilt. Did I do something wrong? Could I have done something to have prevented this? I was blaming myself for the situation my family was enduring.
Our experience, from the first day we walked into the hospital, was positive. Sure, I cried my eyes out after dropping him off each morning the first week. But, the comfort and support emitted from every single person I came in contact with was incredible and unexpected. I was handed a sheet of paper with direct phone numbers and contact names of anyone who would be with Austin. The director of the program insisted that I call at anytime to check in on him. And I did.
At the time Austin was admitted to MWPH, he was eating three foods, all puréed: bananas, avocados, and sweet potatoes. That. Was. It. If I didn’t smash banana enough, and he felt a chunk, he would spit the whole thing out. If the sweet potato wasn’t soft enough or the consistency wasn’t right, he wouldn’t eat it. And, he was only able to drink from a bottle, of which he only accepted his formula, rather than juice or water. At that point, we were helpless, and he needed more than anything we were able to provide him.
Once I was able to move beyond my sadness and guilt, and realize that Austin was there to learn how to eat, a skill he must have to survive, I quickly became extremely impressed with MWPH and the feeding program. It was clearly set up for success; detailed, organized, and an effective and thorough plan of action to help struggling children.
We met every other week with the entire team to discuss his status and development. Included in the team was a dietitian who was responsible for creating a menu that was safe for Austin and his food allergies. She handed me an extensive list of all foods they would be introducing to him. As a mom with a child with food allergies, it can be very scary navigating what foods he can and cannot eat. This resource was invaluable.
It took Austin about a week to adjust and separate from me without crying. He quickly began leading me toward the elevator and down the hall in the direction of the clinic. The program prides itself on routine, which it should, as I watched how it comforted Austin knowing exactly what he was supposed to do.
He learned that upon entering the clinic each day, he would be checked in by the nurse. Then, he would go to the playroom, interact with the staff in there, before a therapist would come in and get him for his first meal. Immediately exiting the playroom, he learned he needed to wash and dry his hands at the sink before eating, a habit we continue to implement in our home today.
As a parent, I had the luxury of sitting in the viewing room filled with computers linked to each feeding room. To have had the ability to not only watch my son on a screen, I was, also, able to observe the techniques and tactics the therapists used in each session. Following each meal, the therapist came in to meet with me to discuss the strategies used, what was effective, and what they may try differently in the next one. It was so incredible seeing the amount of time and effort each specialist put into Austin and his feeding.
Each time I observed, I was mesmerized by their patience, success, and experience; whether it was an occupational therapist, speech language therapist, psychologist, or feeding specialist, each brought a different perspective and specialty to reach the ultimate goal of teaching Austin how to chew, eat, and swallow an array of textured foods to enable enough calorie intake that would allow him to grow and thrive. Not an easy task; that was for sure.
Let’s put it this way. By Friday of week one, Austin was taking bites of a hotdog. We were in such a dark place, that I looked at my husband and said, “If we walked away right now, we would get our money’s worth, and I’d feel Austin was a success.” To us, three bites of a hot dog was a miracle; an absolute life changer. How did he go from not chewing or eating anything to eating a hotdog?
And, that was the start of Austin’s road to recovery from his feeding disorder.
Austin’s issues were identified early enough to have enable treatment to work effectively. Though Austin’s condition was a physiological disorder, as a result of food allergies, he developed an intense fear of food. Similar to that of an eating disorder, Austin had negative associations with feeding. In essence, he not only needed to be taught the skill of eating, but needed help in connecting meal time with positive thoughts.
The six-week program far surpassed our expectations in terms of Austin’s success and the quality of the clinic and the professionals involved. I witnessed Austin’s transformation in his feeding ability and his personality. He added at least twenty new foods to his diet, some including turkey, potatoes, green beans, veggie chips, oranges, strawberries, and Chex cereal. He regained confidence, independence, and happiness. MWPH provided, literally, a life-changing experience for Austin and our family. Now, he is able to sit down at a family meal and enjoy foods that all of us are eating. His favorite drink is apple juice and he is drinking from a “big boy” cup. He will continue to evolve and come upon challenges, but I am confident that he will use the same determination and grit that he used to overcome his feeding disorder to fight through anything– just as I did after recovering from my eating disorder.
Today, our family has learned to adapt to this new lifestyle through the immense help and guidance from the staff at MWPH. Austin is thriving, and continuing to add more foods into his diet that he is able to eat. I, personally, have found a system that keeps him safe, yet, doesn’t deprive myself. We are thankful for all the support through such a challenging time. My hope is I can offer that to other parents and families experiencing similar issues.