Congenital Heart Defects Awareness

This month we highlight Congenital Heart Defects (CHD) Awareness Week. CHD is the most common birth defect in the world, affecting over 1.35 million babies each year, according to Project Heart. 

Alexis: What is a Congenital Heart Defects (CHD)? What causes congenital heart defects in babies? How common are they?

Theresa: In February, we bring awareness to babies who are born with a  congenital heart defect. A congenital heart defect is a heart or blood vessel problem that is present at birth (and often detected beforehand on ultrasounds). CHD affects 1 in every 100 births in the US each year.

Alexis: What type of nutrition is ideal for my baby with CHD?

Theresa: Babies with CHD often grow slower, sometimes regardless of the nutrition that they receive. This is because they use more energy than a baby without CHD. Some babies may need to be supplemented with a higher calorie formula, but many times (and with support), mom can skim the fat off her expressed breastmilk after it separates to the top and can supplement baby with that! There are also other ways to make sure baby gets the fattier “hindmilk”, including shaking your breasts prior to or in the middle of feeds. 

Alexis: Can babies that have CHD breastfeed?

Theresa: Previously, it was thought that babies with CHD would tire out too easily while breastfeeding but recent research and experience shows that this may not be the case. Babies who are breastfeeding actually have better oxygen levels according to some studies, and the immune system boost from breastfeeding will help protect these fragile babies from infections. Some babies with CHD may need to be supplemented, but that doesn’t mean the breastmilk they can receive isn’t good or beneficial.

Alexis: What problems might they have and what symptoms will I notice?

Theresa: There are many types of CHD. Some require careful monitoring, some require medications or special supplementation, some require special feeding accommodations and positions, and some require surgery. Often these conditions will appear on an ultrasound, allowing families and their providers to make informed decisions about feeding plans. It’s also important to note that some types of CHD do not become symptomatic at birth and may present themselves in a few days up to a few weeks. Signs to look for are labored breathing, slow weight gain or weight loss despite good feeds, minimized feeding cues, a baby that tires easily while feeding, among others.

This guide from the organization Mended Hearts has a ton of helpful information and resources: https://lsc-pagepro.mydigitalpublication.com/publication/?m=58561&i=546842&p=58&ver=html5

Alexis: How do I know when I need to see a Lactation Consultant?

Theresa: Most babies with CHD will need some feeding accommodations, so working with an International board-certified lactation consultant (IBCLC) at your hospital and once at home can help you come up with a plan for success. 

Alexis: How can a Lactation Consultant support me and my baby with CHD? 

Theresa: We can help with optimal feeding positions (for both breast and bottle), help support your pumping and skimming of milk if indicated, and can help you determine hunger and fullness cues, as these cues may be less obvious in CHD babies.

Alexis: What kind of feeding goals should I expect to have if my baby has CHD?

Theresa: This is going to be so individualized! Ideally, we want baby to get enough calories to gain weight and recover from any surgeries but for some babies this might be hard. Your baby’s cardiologist will help you come up with goals with related to weight and feeding. And remember, some breastfeeding goals aren’t easily seen, such as the immune benefits of breastmilk.

Alexis: Can you list some examples of feeding interventions that might be used to help a baby feed more successfully while having CHD.

Theresa: Some examples include early, frequent feeds, skin-to-skin contact, techniques to help baby get more hind milk before they tire out, and special positioning that can help baby feed for longer.