Congenital heart defects (CHDs) are the most common type of structural birth defect according to the CDC. CHDs are also a leading cause of birth defect related infant death during the first year of life. In the United States, nearly 40,000 infants are born with a CHD each year, and of those about one in every four babies is born with a critical defect that will require surgery or other procedures in the first year of life.
Research about the effects of CHD on infant feeding is scant, but human milk is considered the ideal source of nutrition for infants with CHD– a life-saving medical intervention– and should be encouraged by care providers. [Davis, Spatz, 2019]
A common concern about breastfeeding a baby with a CHD is energy conservation; actually, coordination of sucking, swallowing and breathing while breastfeeding is easier than bottle feeding.
Chelsea Larmeu, a nurse in a small town in Nebraska, learned that her daughter had a ventricular septal defect during her six-month check up when the care provider heard a murmur.
“I could tell something was wrong instantly,” Larmeu recalls. “My emotions were high.”
Larmeu had the chance to listen to the murmur. It sounded “decent” in size, she says.
Cardiology confirmed a five millimeter hole close to the aortic valve.
While there was significant concern due to the location of the hole, Larmeu says that her daughter never experienced any symptoms related to CHD like swelling, fatigue, tachycardia, tachypnea or cyanosis. They didn’t encounter any breastfeeding difficulty either; Larmeu’s daughter grew well, landing consistently in the 98th percentile for weight.
During the time that her daughter’s case was presented to the surgical board, they would take a “watch and wait” approach. Also during this time, Larmeu’s daughter was in the process of being cleared for a cosmetic surgery to remove an extra digit on her thumb, when they received news from the health care team about the septal abnormality.
“We got the dreadful call that they recommended we do open heart surgery,” Larmeu remembers.
Larmeu credits breastfeeding for her daughter’s health, and says she hoped to continue breastfeeding through the heart surgery. Just shy of 18 months, Larmeu reports that her daughter self-weaned, one month before the surgery.
“It was hard on me knowing it was done,” Larmeu shares.
Immediately after the procedure, Larmeu says her daughter wanted to go to the breast.
At that point, she says she wasn’t producing enough milk to satisfy her.
Instead of direct breastfeeding though, Larmeu had pumped and saved enough milk for her daughter to receive breastmilk from a bottle for six weeks post surgery.
Larmeu’s determination to breastfeed and provide human milk for her baby is evident. Still, breastfeeding can be hard, she acknowledges. And while overall she reports feeling supported in her efforts by family members, her workplace and care providers, Larmeu recognizes a deficit in support specific to families challenged by CHDs in her area.
Differently, every Australian state and territory has a branch of ‘HeartKids’ which offer both telephone and in-hospital support. They have regional representatives who arrange special events to support families with a child with CHD.
One mother who breastfed her child with a CHD for three and a half years is quoted saying, “It is reassuring to talk to other mums and hear they were going through similar challenges. Sometimes you feel like you’re going crazy, and perhaps you are, but it’s nice to know you’re not alone.” [https://www.breastfeeding.asn.au/bfinfo/breastfeeding-your-baby-congenital-heart-disease]
Since graduating from college, Larmeu has been passionate about helping mothers postpartum. Recently, she completed the Lactation Counselor Training Course (LCTC) to enhance her ability to support new moms and their babies no matter what their challenges or needs.
Resources related to CHD and infant feeding
ABM Clinical Protocol #16: Breastfeeding the Hypotonic Infant
ABM Clinical Protocol #35: Supporting Breastfeeding During Maternal or Child Hospitalization
Australian Breastfeeding Association Breastfeeding your baby with congenital heart disease
UNICEF’s Human milk and infants with congenital heart disease: A summary of current literature supporting the provision of human milk and breastfeeding