From Feeding Tube To Foi Gras - How A Chef And His Wife Helped Their Daughter Conquer Food Aversions
One of the most powerful things food has to offer, is its ability to bring people together. People who you may not have met under normal circumstances. People whose stories and lives have the ability to educate, bring joy and laughter, or support and understanding to the lives of others.
It was just a few short months ago, that Chase had the pleasure of filming one of his episodes with Executive Chef Greg Daniels at his restaurant, Haven Gastropub, in the City of Orange, Ca. It was through this experience with Chef Daniels that I unexpectedly learned about a rare disorder called Treacher Collins Syndrome. A disorder that Chef Daniels 3-1/2 year old daughter Madeleine was diagnosed with when she was born. It was also through this experience that I learned the painstaking process Chef Daniels and his wife, Abby, had gone through to get their daughter Madeleine to eat. As a result of complications related to Madeleine’s Treacher Collins diagnosis, Madeleine developed severe food aversions. After hearing all of this, I couldn’t help but be intrigued. Here I was speaking to someone who’s greatest passion, second only to his family, was food and being a chef. Yet, he had a child whom he and his wife had to train to like food. Yet again, who better qualified for the job, than a chef! I had to learn more about their journey, so I sat down with Chef Daniels’s wife, Abby; their beautiful daughter, Madeleine; and their feisty new born, little Gregory, to hear more about it.
Treacher Collins Syndrome is defined as a condition that affects the development of bones and other tissues of the face.” Signs and symptoms vary, but most that are diagnosed have underdeveloped facial bones around the cheeks, jaw and chin. In some cases respiratory problems occur as a result of the under developed facial bones. Symptoms can also include hearing loss, a cleft palate, and eye abnormalities. However, this syndrome does not affect the child’s intelligence, which was made clear the minute I met Madeleine. At just 3-1/2 years old, you would never know that this smart, confident, happy-go-lucky girl had already braved 11 surgeries. Like any other curious child, she came prancing up to the door to greet me alongside her mom and baby brother, when I arrived. It took Madeleine no time to introduce herself and draw me into a captivating conversation about Disney Princesses, and how much she loved visiting the Eiffel Tower in Paris; all while munching on snacks that she would go and pull from the cupboard and have her mom open for her. Something that you probably would not have seen a year ago.
Whenever I meet moms like Abby Daniels, I feel as if I am meeting mild mannered Clark Kent at first. And then, as they begin to share their stories, it’s like being in the phone booth watching them peel off their disguise to reveal their caped uniform. Abby speaks about her and Greg’s experience, as well as Madeleine’s Treacher Collins diagnosis, as only a mother and wife can - which is through the voice of each job title she has carried through this process; wife, mom, nurse, advocate, teacher, comforter, and protector. Abby explains that at 24 weeks pregnant, she and Greg were told that their first born child would be born with complications. To add to this news, the doctors informed them that they would not be able to give them a definitive diagnosis until their child was delivered. Despite the concern that both Abby and Greg had, it did not keep them from looking forward to meeting their daughter. “This baby is coming no matter what, and whatever happens, we’ll just have to go with it.”
Fast forward to delivery day, and Abby is surrounded by approximately 30 hospital staff members who were ready for anything. At first, the doctor only pulls out Madeleine’s head and shoulder to carefully examine her. Once the initial exam was complete, everyone got in “ready mode.” The doctor pulled Madeleine out the rest of the way. Then it was time to cut the cord. “As soon as they cut the cord, her system crashed and they rushed her up to ICU.” Madeleine was immediately intubated, and an NG tube was inserted through her nose for feedings. It was also discovered that Madeleine had a cleft palette, which she would later have surgery to correct. At just 5 days old, Madeleine underwent a tracheotomy, and at 4 weeks old she had a feeding tube inserted to replace the NG tube so that she could come home. Madeleine was diagnosed as being deaf in both ears, for which she began learning sign language at just 3 months, and also now has hearing aids for both ears. Madeleine also had to go through the painful process of stretching out her lower jaw bone so that as she grew, the rest of her face could grow into her jaw. This required that 2 screws be implanted into both sides of her jaw and turned twice a day to help push out her jaw bone. Through all of this, Abby describes Madeleine as being “a happy baby, no matter what.” My question though was, how did Abby get through it? Her response, “You don’t think about it. You just do what you have to do.”
Within the 1st month of Madeleine’s life, Abby went from knowing virtually nothing about Treacher Collins Syndrome to being able to change and suction out both a feeding tube and a trache tube just as well as a licensed nurse. Something that she soon found out she would have to do at almost every feeding, as a result of Madeleine’s debilitating reflux. Madeleine could barely keep anything down. She would vomit just about everything up after her feedings. Abby tried all kinds of formula and food quantities in an attempt to eliminate the reflux issue and make feeding time as bearable for Madeleine as possible, but it continued to be a challenge. It wasn’t until Madeleine was 18 months old that her reflux began to taper off. By this time however, she had understandably developed a phobia of having anything near her mouth, especially food. Her memories of anything near her mouth were all negative up to this point. Either someone was suctioning out her mouth or she was vomiting something up. That coupled with the fact that because of the structure of her jaw, she was only able to open her mouth a centimeter. Eating was just something that didn’t interest her at all. She refused to take a chance on food. Abby and Greg had to take baby steps with Madeleine. First putting a taste of salt or lemon on her tongue, which Madeleine loved, but it would be months before she would try anything else, so they had to continue using the feeding tube. One of the many frustrations Abby and Greg experienced in the process, was the lack of understanding that some would have over the severity of their daughters food aversions. Hearing people belittle the severity of their child’s food aversions by saying things like, “Oh, she’s just a picky eater” or “I bet if you fed her ice cream she would eat that”, was extremely frustrating for them. Madeleine’s defining moment came when her dad made her pureed carrots with lots of butter one day. From there she became more interested in food.
To help her along, Greg started to involve her in the cooking process. He would invite her into the kitchen to cook with him. Showing her the foods he was preparing and telling her what they were. Trust was an important part of the process. Greg and Abby were insistent on being honest with her about food and not using trickery to get her to eat something. “We’re always honest with her. We tell her exactly what we are giving her to eat.” They even gave her a “spit cup.” If she didn’t like something, she could just spit it out. They also never used food as a motivator to get her to do anything either. “It was important for us that she have a healthy relationship with food.” And healthy it is. Madeleine is now more adventurous in trying new foods. Even trying Foi Gras while on her recent trip to Paris, France with her family.
With the help of continued food therapy at home with mom and dad, mouth exercises to help increase the stretch of her jaw and her easy spoon (designed to fit into her mouth), Madeleine has been on solid foods consistently since December 11, 2014. Her favorite food now? Pancakes! While Madeleine still requires the use of a trache, and is still in therapy to help increase the stretch of her mouth, the family celebrated the removal of Madeleine’s “Mic Key button” (Internal feeding tube) on May 19th, 2015.
When I asked Abby if she could name one thing that she has learned from this experience she very quickly says, “You can’t control anything in life. You have to make the best of every circumstance and be grateful in the process.”
So what’s Madeleine’s next big goal? It’s to become the next Disney Princess of course. Princess Madeleine? That sounds good to me!
Thank you Greg, Abby, Madeleine, and baby Gregory for sharing your inspiring story with us. I'd also like to thank Summer LaLande Photography.