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Your HLHS Child and Feeding
We heard your questions on Twitter and are here to bring you answers on HLHS and feeding. We sat down with Dr. Chris Moir, pediatric surgeon, and Penny Roskos, R.N., CNP, of Mayo Clinic’s Children’s Center to get some insight into the issue.
Q: What makes congenital heart disease and feeding so challenging?
A: Feeding is one of the most vital issues for all babies and children. In fact, newborns normally feed every few hours in order to get the needed nutrients to help their bodies grow. In order for children to grow and thrive, they must receive a sufficient number of calories to meet their bodies’ high metabolic demands. Babies also have larger brains and require the greatest need for continuing nutrition of any age group.
HLHS children need even more calories because their bodies have to work harder. More effort is required to eat, play and breathe. In addition, some children have respiratory difficulties or reflux issues further complicating their circumstances. The need for nutrients is great, but the ability to take in the calories is reduced because of how much effort is required to do so. In addition, these children typically undergo three surgeries very early in their lives which increase the caloric demand even more in order to help their bodies recover from the stress of the surgery. Further, children with congenital heart defects tend to have a slower gastrointestinal function (due to the reduced blood flow)which will also factor into your child’s feeding.
The challenge of feeding is a complex issue due to many factors and obstacles. Because it requires more effort for HLHS children to feed, it is harder for them to get the proper amount of nutrients on their own. It is important to talk with your health care provider who can assist you in determining the right caloric intake for your child, finding the right feeding schedule, the proper formula, and determining the right speed of feeding your child.
The good news is that within the medical community there are individualized answers and solutions to help you and your child find the right balance for meeting their feeding needs. It is important to discuss all options with your medical professional.
Q: What are the medical feeding options for children with feeding issues?
A: Sometimes medical feeding interventions are necessary to support a baby’s nutritional needs. There are two types of tubes usually given after surgery that provide temporary relief for children unable to receive the required nutrients. The tubes are either an oral gastric tube (OG) or a nasogastric tube (NG).
For children with long-term feeding issues, the gastrostomy feeding tube (G) is a possible option. The G tube is inserted into the abdomen during surgery and provides an alternative way for the child to receive enough calories.
In the video below, a father shares his personal experience regarding his daughter’s G tube. After struggling for some time trying to get their daughter to consume enough calories, the family wrestled with the implications of inserting a G tube. After much consideration, their daughter received a G tube and is now gaining weight and thriving.
https://www.youtube.com/watch?v=u681PY5Gh0E&list=PLSWR1ylG_6JYbCoPrbSSKYluLf1exsxGM&index=2
Q: Do most HLHS children outgrow feeding issues?
A: Yes, the majority of HLHS children outgrow feeding issues. However, every child is different and has his or her own individual needs and requirements.
Q: Is it okay to wean my child from a feeding tube?
A: Absolutely! Weaning from a feeding tube is a great goal to be discussed with your medical support team. Dieticians and nurses will work with your family to reach the feeding goals set by your doctor. Goals will be set to determine how much food should be taken in through the mouth versus the feeding tube. Although it can seem frustrating as the nutritional goals change, it is important to keep working with your medical team. 
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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science, to diagnostic imaging to regenerative therapies.
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