Breastfeeding your baby with congenital heart disease

Congratulations on your new baby! You may feel uncertain about how breastfeeding will be possible when they have a heart condition. You should find it reassuring that many babies with congenital heart disease (CHD) can successfully breastfeed, sometimes even after a heart transplant1.

Every day in Australia eight babies are born with CHD2. In the past, they were the ‘blue babies’, most of whom died at birth. However, due to medical advances there are now more people over the age of 16 with CHD, than under the age of 16. Half of the children diagnosed with heart disease require surgery or multiple surgeries.

Breastfeeding can be as important to mothers as it is to their baby.

“It is one of the most beautiful experiences we can have as a human being but at the same time it is challenging, painful, embarrassing at times, empowering at others, and many other emotions all at once!” – Jana, Oliver breastfed for 13 months

How your child is affected by a heart condition can vary widely. Some can occur in conjunction with other conditions such as Down syndrome.

Each Australian state and territory has a branch of ‘HeartKids’ who offer both telephone and in-hospital support (see below for details). They have regional representatives who arrange special events to support families with a child with CHD. Many parents find this contact very helpful. Your medical advisor will also be able to provide you with information about early intervention programs in your area.

“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.” – Tanya, James breastfed for 3.5yrs

The importance of breastfeeding

Breastmilk is nature's food for all babies. Breastfeeding your baby is much more than nutrition. It also provides immune protection, skin-to-skin contact, stimulation of all the baby's senses and much more.

Every child with a heart condition is unique in the type, extent, and limitations of their condition. Breast and bottle feeding can be difficult for some infants due to their condition. This often leads to the need for supplementation with either breastmilk or formula via nasogastric tubing. This does not mean breastfeeding must cease. Many babies can be breastfed while being fed via a nasogastric tube.

If your baby is born prematurely, the Australian Breastfeeding Association (ABA) has a booklet, Breastfeeding: your premature baby, which contains detailed and up-to-date information, plus mothers' comments and stories, photos and suggestions.

If your baby has difficulties breastfeeding at first, persistence and time will often help him (and you) to learn. Many babies need extra help to breastfeed. Mums of babies who are having difficulty learning to breastfeed are encouraged to express and feed baby breastmilk, while teaching baby with the help of a skilled lactation consultant.

“This 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.” – Lee, with Kyle, 7 months old, breastfeeding

Breastfeeding information

In the first hour or two after your heart baby is born the foetal circulation is still adapting to the new environment3,4. This is an opportunity for you to hold your baby skin-to-skin, breastfeed, and bond with your new baby. Many health checks such as ‘Apgar’ scoring can be performed with your baby on your chest. As your baby is likely to be cared for by a team of health professionals, it may be necessary for you and your partner or support person to convey your wishes regularly to ensure all team members are aware of them.

As foetal circulation ceases and post-birth circulation sets in, medical staff may need to intervene and take the baby away for special care. This is difficult for any mother, but it is reassuring you can still provide colostrum (first milk) and later breastmilk to your baby.

“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.”

- Emily, with Ben, 6 months old, breastfeeding

A good knowledge of how breastfeeding works will help you establish breastfeeding more easily. ABA’s booklet ‘Breastfeeding: an introduction’ aims to give you basic breastfeeding information to help with your new baby.

You may find that it is very helpful to contact an ABA counsellor, a lactation consultant or your child health nurse. Maternity units in many large hospitals employ lactation consultants, while others work in private practice. As well as supporting you as you and your baby learn to breastfeed, they may be able to put you in contact with another mother who has breastfed a baby with a similar condition.

Some babies may also have trouble coordinating their sucking, swallowing and breathing and may gulp as they feed. While many heart babies tire quickly, breastfeeding is often still easier for these infants than bottle feeding5. It is important that you make sure baby is getting enough milk. Signs of this include:

  • At least five heavily-wet disposable nappies, or six pale, very wet cloth nappies in 24 hours
  • At least 3 soft or runny bowel motions every 24 hours. Babies older than 6 weeks may have fewer bowel motions.
  • Good skin tone. (If you gently ‘pinch’ his skin, does it spring back into place?)
  • Some growth in weight, head circumference and length. Note that heart babies typically don’t grow as well as their healthy peers6.

If you are worried about any of these, see your medical adviser immediately.

“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).” – Lauren, breastfed Aaliyah for 14months

Attaching your baby to your breast for the first time

Human babies, including those with heart conditions, are born with the instinctive knowledge and ability to get themselves to their mother's breast and to attach themselves correctly, with their mother's support. Spending one-on-one, skin-to-skin time with your baby when you are learning to put her to the breast will help to allow these 'baby-led attachment' instincts to work. If you get the chance, you may like to try this technique (as described in this article) with your baby, as you and she are learning to breastfeed.

Sometimes, due to unforeseen circumstances mothers may not get to experience this. It is reassuring to know anytime you touch and spend time bonding with your baby is beneficial to both you and your baby7.

You can also hold your baby lying on her side across your lap, her chest facing yours, her lower arm around your waist, so that she does not have to turn her head to grasp the nipple. Some mothers use a sling to hold their baby's body in a C-shape keeping her head and bottom tucked in. This may particularly helpful after surgery where your baby will require additional body support. Your baby may also be helped by supporting their shoulder blades as they feed.

Alternatively, you may like to use the 'underarm hold'. Put a pillow at your side and another pillow across it and your lap. Rest your baby's bottom on the first pillow and support her back on your forearm while you cradle her head in your hand. You can try different feeding positions, until you find one that suits your baby.

If your baby is having trouble sucking correctly, contact a lactation consultant, child health nurse, ABA breastfeeding counsellor or your medical adviser. There are techniques such as cup-feeding and various lactation aids which may be helpful.

In conclusion

Breastfeeding your baby may not be easy at first, but as she grows she will become stronger and more able to feed effectively. Make use of all the support services available including your local Australian Breastfeeding Association counsellor.

 “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!!” – Tanelle, with Ethan, 6 months old, breastfeeding

“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.” – Celeste, Logan (Heart Angel)

References

1. Owens, B. (2002). Breastfeeding an infant after heart transplant surgery. Journal of Human Lactation, 18(1), 53-55. doi: 10.1177/089033440201800109

2. Leggat. S. (2011). Childhood Heart Disease in Australia – Current Practices and Future Needs. Sourced from: https://www.heartkids.org.au/wp-content/uploads/2012/01/White_Paper_A4_M...

3. Khan Academy (2012). Baby circulation right after birth - Circulatory system physiology. Sourced from: www.youtube.com/watch?v=jFn0dyU5wUw

4. Allen, H. D., & Ovid. (2013;2015). Moss and Adams heart disease in infants, children, and adolescents: Including the fetus and young adult (8th ed.). Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins.

5. Marino, B. L., O'Brien, P., & LoRe, H. (1995). Oxygen saturations during breast and bottle feedings in infants with congenital heart disease. Journal of Pediatric Nursing, 10(6), 360-364. doi:10.1016/S0882-5963(05)80033-8

6. Daymont, C., Neal, A., Prosnitz, A., & Cohen, M. S. (2013). Growth in children with congenital heart disease. Pediatrics, 131(1), e236. doi:10.1542/peds.2012-1157

7. Altaweli, R., & Roberts, J. (2010). Maternal--infant bonding: a concept analysis. British Journal of Midwifery, 18(9), 552-559.

Heart Kids

  • Heart Kids Information Line 1800 432 785 (during business hours)
  • National – Heart Kids Australia

Level 2 / 39 Hume Street Crows Nest NSW 2065

Phone: 02 9460 7450

Email: office@heartkids.org.au

Web: https://www.heartkids.org.au  

  • VIC/TAS - HeartKids Victoria / Tasmania

Suite 33, Level 3 204-218 Dryburgh Street North Melbourne Victoria 3051

Phone: 03 9329 0446

Email: heartkids@heartkids.org.au

Web: http://heartkidsvictas.org.au/

  • NSW - HeartKids Limited

PO Box 149, CROWS NEST NSW 1585.

Phone: 02 9460 7450

1800 432 785

Email: mail@heartkids.org.au

Web: http://heartkids.org.au/

  • QLD - HeartKids QLD

Suite 3, 922 Stanley Street East, EAST BRISBANE QLD 4169

Phone: 07 3217 3163

Post: PO Box 599 COORPAROO QLD 4151

Web: https://www.heartkidsqld.org.au/

  • NT/SA - HeartKids South Australia and Northern Territory

275 Main North Road Enfield SA 5075

Phone: 08 8269 3122

Post: PO Box 364 North Adelaide SA 5006

Email: hksa@HeartKids.org.au

Web: http://heartkidssa.org.au/

  • WA - HeartKids WA

Level 2, General Services Building, Princess Margaret Hospital, Subiaco, WA

Phone: 08 9340 7996

Email: hkwa@heartkids.org.au

Web: https://heartkidswa.org.au/

© Australian Breastfeeding Association August 2018

Last reviewed: 
Aug 2018