It’s Congenital Heart Defect (CHD) Awareness Week! We wanted to share some stories of children we have seen at Thrive who are all CHD Warriors!
Max. Emrie. Theo.What do all of these names have in common?
They were all born with congenital heart defects and needed a feeding tube to survive. The feeding tube was a lifeline for them and for their families until their heart could be repaired and they were stable on their own. Congenital Heart Defects are the most common birth defect, and reportedly affect 1 out of 100 babies. (The Children’s Heart Foundations, 2013). Many children require surgical repairs in the early days of life. Feeding is a lot of work for a baby, so it isn’t surprising that many babies with heart problems also need a feeding tube to help them as they recover and gain strength.
Some children easily transition to eating by mouth as they become stronger. Others seem to struggle and the feeding tube becomes more long-term than was originally planned or predicted. We met Max, Theo, and Emrie at different ages, and they all had different types of heart defects. One thing was the same. They had all grown to be strong and healthy, but they all still depended on their feeding tube. All of their parents reported that the tube was now interfering with eating and learning new skills, yet they were stuck because the kids weren’t eating enough by mouth to stop using it.
These kids are not alone! Many families get stuck in this area and have difficulty getting out of the pattern of feeding tube dependency. The first step is to start reading your babies’ cues. Even if the tube is still needed for strength and stamina, it is never to soon to notice when your baby is hungry or full or when a feeding seems to be enjoyable or too much work.
The next step is to work with a team to develop a plan to wean off of the feeding tube. At Thrive, we work with your physician to make sure the time is right and that the plan is safe to reduce what goes in the tube so your child can take more by mouth. These heart warriors worked hard, but were all able to overcome both cardiac and feeding challenges to be independent and healthy eaters!