Breastfeeding your baby with congenital heart disease

It can help to know that many babies with congenital heart disease (CHD) can breastfeed, including some who’ve had heart surgery or a transplant.

Breastfeeding is very valuable for babies who need extra care. As well as providing nutrition, it helps protect your baby from infection and supports closeness through skin-to-skin contact. For many mums, providing breastmilk can also feel like an important way to care for their baby during a difficult time.

Every baby with CHD is different. Some babies may find feeding tiring or need extra support. Some may need extra milk through a tube (nasogastric tube). This doesn’t mean you need to stop breastfeeding. Many babies can breastfeed alongside tube feeds, and feeding can build gradually over time as your baby grows and becomes stronger.

Your baby may need time and support to learn to breastfeed. You could keep offering breastmilk while your baby develops their feeding skills, with support from a lactation consultant or other health professional.

If your baby was born early, you may also find it helpful to read more about breastfeeding a premature baby.

Breastfeeding your premature baby

When your baby is born

Soon after birth, your baby is adjusting to life outside the womb. If your baby is well enough, you may be able to hold them skin-to-skin and start breastfeeding in the first hour or two.

Some checks can be done while your baby is on your chest. Your baby may also need care from a medical team. You and your support person can share your wishes about breastfeeding with them.

Sometimes babies need to go to special care soon after birth. This can be hard for any parents. Even if your baby isn’t with you, you can still express your colostrum, ready for when your baby needs it.

The first breastfeeds

Babies are born with instincts that help them find the breast and attach. Spending time skin-to-skin with your baby can help these instincts work.

There are different ways to hold your baby when feeding. You could try a few and see what feels right for you and your baby.

Laid-back feeding: Your baby moves from skin-to-skin on your chest to find your breast. This is sometimes called baby-led attachment.

Cradle hold: Your baby lies across your lap, chest facing you. Their body is well supported so they don’t need to turn their head.

Underarm hold: Your baby is tucked along your side, supported by pillows and your arm.

Extra support around your baby’s body or shoulders can help, especially after surgery.

Some babies with CHD may find it hard to coordinate sucking, swallowing and breathing. They may also tire more easily during feeds. If your baby is having trouble feeding, ask for help from a lactation consultant or other health professional. They may suggest different ways of feeding, such as cup feeding or using a lactation aid.

If your baby can't breastfeed yet

Some babies may not be ready to breastfeed straight away. Any time you’re able to spend holding your baby, touching them or having skin-to-skin contact is valuable. It helps your baby feel secure and supports bonding between you.

You can also express milk to keep your supply going until your baby is ready to breastfeed. This means your baby can still receive your milk, even if they’re not feeding at the breast yet.

Expressing for your newborn

Getting support

You don’t have to do this on your own. Support can make a big difference.

You could speak with an ABA breastfeeding counsellor, lactation consultant or your child health nurse.

HeartKids is an organisation that supports families of children with CHD. They offer phone support, hospital support and family events. Your doctor may also know about services in your area.

Contact Heartkids

Stories from other mums

Lee, with Kyle, 7 months old, breastfeeding

[Breastfeeding] was the one, solitary thing I could do for my baby - his life was literally in the hands of everyone else and I had no control.

Tanya, James breastfed for 3.5yrs

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.

Emily, with Ben, 6 months old, breastfeeding

“When Ben was not even a week old he was in an extremely critical and precarious condition. Due to this I was delaying going to pump and when I did pump I was doing a quick job as I didn’t want to be pumping if Ben crashed. The nurses in the Paediatric Intensive Care Unit (PICU) offered to bring a hospital pump and set it up next to Ben’s bed for me so I didn’t have to leave his side. They valued that I was making food for Ben even if he wasn’t able to use it yet and it also gave me hope that they believed he could pull through and might need it one day.”

Lauren, breastfed Aaliyah for 14months

She was crook and therefore didn't feel like feeding. It was 4 weeks till she was well enough for open heart surgery. My milk machines started to falter but with a prescription for Domperidone and a helpful lactation consultant we got there in the end. I still remember sitting in hospital, and her asking if she could touch my boobs so that she could show me how to massage them. Just the laugh I got from that alone helped ease my stress and get things flowing again. I left the hospital with 23 litres of expressed breastmilk (EBM).

Tanelle, with Ethan, 6 months old, breastfeeding

We went home a week later with the plan of 10minutes on the breast and the rest through the nasogastric tube. Four days after being home we went back to hospital as Ethan was breathing funny. The doctors did tests to check everything and it ended up being his NG tube irritating his throat so it was taken out and we were put on the ward for another night, and overnight. Ethan breastfed like a champ!!

Celeste, Logan (Heart Angel)

Our little warrior was born 29th April. He thrived and fed so well for the 11 days we had him home from hospital. Sadly, my instincts told me something was wrong and we took Logan back ... we stayed in hospital overnight, he still fed well but the next morning Logan went into cardiac arrest. We lost our beloved little man on the 15th June.

After we lost Logan a friend of mine tagged me in Human Milk for Human Babies page on Facebook because she knew I was passionate about our breastfeeding journey and had a lot frozen. That lead me to post Logan's story and donate some of his leftover milk to a mother who could not breastfeed. The breastfeeding journey we had was beautiful and I've since had jewellery made from Logan's breastmilk.