CONGENITAL HEART DISEASE + PEDIATRIC FEEDING DISORDER
Published by Renee Bergeron on Feb 15, 2018
For February, a time known for American Heart Month, National Wear Red day, and Valentine’s Day, Feeding Matters welcomes guest contributor Renee Bergeron, author of Little Earthling Blog. A mom of 14, Renee always dreamed of a peaceful home full of little feet, days spent on a lovely piece of property with a lush organic garden to supply our family’s needs. Instead, she “ended up with real, live children who often interrupt me, a black thumb and hunk of property that no one has time to keep up with.”
When our son, Apollo, was diagnosed with a heart defect at 18 months old we weren’t shocked we were relieved. Apollo had been suffering from mysterious symptoms that puzzled the doctors. He had failure to thrive, loud, raspy breathing and poor sleep. He had already had his adenoids removed which had not improved his sleeping, eating, or breathing as the doctors had predicted.
After a severe choking incident a MRI was ordered. That day we were told our son had a double aortic arch, a type of vascular ring. We were immediately plunged into the world of congenital heart defects. We were told he would need just a single, non-invasive surgery to repair the ring. We were told to expect a full recovering, immediate improvement in his eating and gradual improvement with his breathing.
But it didn’t happen that way.
Apollo’s first meal after his surgery was a success! He downed waffle pieces, a bit of egg, and some canned peaches. But by the time we were home two days later, his feeding issues were back. Apollo wanted to nurse constantly. Even though he was now 22 months old, he barely ate solid foods. Getting two or three bites in was a “good” meal. He grabbed at the food he saw on the table, would take a bite, and cry. I ended up spending most of my day nursing and trying to get bits of food into him.
Apollo had struggled to eat from birth. Initially we thought he was sleepy from his c-section birth. Then, at two weeks old, he had his tongue tie clipped. He still struggled. We took him to the doctor again and again. At ten months old we took him to a children’s hospital where we were told he had severe reflux and was allergic to milk. We stopped all milk products, added in meds for reflux, and he still lost weight. He was tested for celiac and cystic fibrosis. Both came back negative, so we continued to struggle. At 10 months old Apollo was hospitalized with RSV and pneumonia. But none of that explained his eating issues. By his first birthday he was skinny, fussy, and still dropping off the growth curve.
That is why, when he was diagnosed with congenital heart defect (and a “simple” one at that) we were relieved. But our story didn’t end after his “non-invasive” surgery. Six weeks after his surgery to divide the ring, he was in the hospital again where, over a five day period, a slew of tests were run on our curly-haired toddler. An Upper GI finally revealed an answer to his feeding struggles. The vascular ring had left a diverticulum (pocket of blood) that was compressing his esophagus. That same day we made the decision to have a feeding tube placed and a week later the surgery was done.
We never gave up on our son being able to be tube-free. Our immediate concern was to help him gain weight and get “full” after a feeding for the first time in his life. Adjusting to life with a tube-fed toddler wasn’t easy but we did it. I made it my personal goal to never have a day pass without him eating something orally.
We were told Apollo might have a feeding tube for the rest of his life. So we adjusted our expectations. We bought a large, sturdy stroller to take him hiking and camping. We tube-fed him where ever we happened to be. We were determined that he would not miss out on life.
Eventually, it took two more surgeries, a year of feeding therapy, patience and prayers, but at age six-and-a-half, and midway through first grade, our son had his feeding tube removed.
Today Apollo is a healthy seven-year-old who loves LEGO, books, pizza, chips, and ice cream.
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If you have a child with pediatric feeding disorder, feeling overwhelmed is not unusual. Feeding Matters is committed to providing parents with the support and resources they need to deliver the best care to their children, including our parent-to-parent coaching program and on-demand knowledge center.
For more information about CHD, please visit the American Heart Association’s page on congenital heart disease.