When a baby is born, parents instinctively provide nutrition for their new bundle of joy and watch in awe as their baby gains weight and starts to grow. With babies born with a congenital heart defect (CHD), the feeding journey can be much more frustrating and challenging. Here are some tips for feeding children with a congenital heart defect.
What is a congenital heart defect? A congenital heart defect is when the heart or the blood vessels around the heart didn’t develop. CHD is the most common birth defect, and it is more prevalent in babies born with Down syndrome. There are several types of CHD’s, including when heart valve issues cause restriction of blood flow, when parts of the heart are underdeveloped and when there are holes in the heart. Treatment for little ones with heart defects can be a combination of surgery, medication and, in the direst of cases, a complete heart transplant. These heart issues can last a lifetime and can affect all aspects of a child’s life, especially mealtime.
Breast & Bottle Feeding: Babies with CHD may not gain weight as quickly as other babies due to their difficulties with the suck-swallow-breathe cycle. They oftentimes become fatigued when eating, as they have to put in extra work to breathe and eat safely. In turn, they do not consume enough calories and have poor growth. To make matters even more difficult, babies with CHD may have a poor appetite from the effort it takes to feed. And, sometimes, they refuse to eat.
Tube Feeding: Some babies and toddlers struggle with getting an adequate amount of calories, and this can occur whether the baby is breastfed, bottle-fed and/or consuming solids. Another feeding option is the use of a temporary feeding tube, called a nasogastric (NG) tube. An NG feeding tube is propelled through the child’s nose down into the stomach, and then liquid calories (formula, breast milk or a high calorie formulation) are transported through the tube. There are two other feeding options that are more comfortable for the child on a daily basis, but these options require surgery. The gastrostomy tube (G-tube) is surgically placed into the child’s stomach and the jejeunostomy tube (J-tube) is placed directly into the child’s intestine. Although they seem like drastic measures, these tubes can help a child grow and thrive quickly, and they keep a child from becoming orally aversive to food or to their feeders. In addition, feeding tubes can decrease the stress parents feel during oral feedings since they know that their child is receiving adequate nutrition. It allows the parent to focus on bonding with their child and maintaining a good feeding relationship. All three types of feeding tubes can be removed once the child has caught up in weight or they can consume calories without a struggle.
Solid Food Feeding: As a feeding therapist working with children with CHD, I recommend not putting cereal into bottles, as it becomes too much work for kids to suck this thick liquid. (Well-intentioned medical professionals want to get additional calories into the child and will put solids into the bottles, but this method unfortunately backfires and baby can start to lose weight again). I start by feeding them solid purees from a spoon; within this part of the process I ensure that they have a safe swallow and help them learn how to manipulate solid food without expelling extra energy. I then transfer them to a combination feeding approach of purees and finger foods that baby can eat independently. (It’s important for the feeding therapist to pick the proper feeding tools, like the Happy Mat to make mealtime efficient for them before they fatigue). Then I empower the parents to take notes about each feeding in order to give their medical team more information on where the child is struggling. Some feeding questions to consider during bottle, breast or solid feedings are:
- Does your child have a poor appetite at every meal?
- Does your child have a rapid heart beat, rapid breathing or decreased oxygen levels when eating?
- Does your child fatigue easily during meals?
- Is your child having any Gastrointestinal (GI) issues or absorption problems during or after mealtime?
- Has your child had any aspiration issues (food or liquids going into the lungs), bronchitis or pneumonia?
Answering these questions through each stage of a child’s life will help parents be proactive with feeding decisions. Some children with a CHD have years of feeding therapy, but by the time they are teenagers, they have usually caught up in their growth and learned to maintain their weight.
I find that when parents are informed they can make better choices regarding feeding their little heart warrior. With love and patience, these kids can overcome their feeding battles one heart beat at a time! #ezpzfun #CHDAware
Dawn Winkelmann, M.S, CCC-SLP
Speech Language Pathologist & Feeding Specialist for ezpz