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Breastfeeding a baby with Congenital Heart Disease - Hannah


At my 20 week scan it was spotted that there was something wrong with my baby’s heart. A specialist scan identified him as having right sided aortic arch. I did some reading and found that this particular heart defect is common in people with chromosome 22q11 deletion (DiGeorge syndrome). 

I was working as a breastfeeding supporter in a maternity hospital at the time and I was keen to avoid formula. The risk I’d seen most commonly was babies who were sleepy or wouldn't latch - the mothers would express say 1ml and be told that their baby must have 30ml and so must have formula. I therefore started antenatal expressing, storing the colostrum in the freezer because I wanted to make sure I had enough to meet hospital demands if my baby didn’t latch straight away.


My baby was born in the hospital at 41 weeks. He didn’t latch immediately so I held him in skin to skin and expressed colostrum onto his lips. The midwives said his breathing was too fast and transferred him to the neonatal intensive care unit (NICU). The doctors said they thought he might have sepsis and said they were going to give him antibiotics and that, as he was an 8 pound baby, he must have 40ml feeds. I said that was nonsense for a baby on his first day but they insisted and wanted to give him formula. I quickly hand expressed 10ml and sent my Mother to my house to collect more colostrum, so the next 30ml came within the hour, while I carried on expressing.


My baby stayed in NICU for five days and then was on the hospital ward with me for another 2 days till we went home. He was fed by nasogastric (NG) tube at first but started latching at day two. They carried on with the NG tube on NICU because they wanted to measure how much milk he was getting.I would have spent every minute in NICU holding him if I could but kept being sent away. Through the night I came three hourly to feed him. The staff asked if I wanted a screen round me. I didn’t.


Amidst this I had noticed that my baby had the small deep-set eyes and tiny mouth (micrognathia) typical of DiGeorge syndrome so I mentioned this to the neonatologists who ordered blood tests and two months later they confirmed that my son did have DiGeorge syndrome. There are almost always palate issues with this syndrome and my son, for his first couple of months, would regurgitate milk from his nose during and after feeds but I just kept feeding him so he gained weight fine. My first child had been tongue tied and feeding was very painful for the first five months so feeding the second baby was a joy. After that separation in hospital my baby was glued to me, day and night, feeding, sleeping, searching with his mouth and re-latching.

A subsequent heart scan revealed that as well as the right sided aortic arch my son also had a bicuspid valve. Children with DiGeorge syndrome often have an under-developed or absent thymus and have a lot of immune system problems. My son has had lots of colds and runny noses but never anything more serious and I think this is because he’s getting plenty of immune factors from my milk.

I have also faced barriers to continuing breastfeeding. I had his paediatrician when he was only five months telling me that he should be on six feeds a day and that I was ‘nothing but a milking machine’. I went back to work three days a week when my son was 11 months old and had staff in the maternity hospital say they thought it was disgusting and weird that I was expressing milk and they wouldn’t let me store my milk in the staff fridge so I brought my own fridge into work.

My son is now two and a half, still breastfeeding and I love the closeness that we have. It’s so nice to get home from work and sit, feeding him. Breastfeeding continues to be the quick, easy way to get him to sleep at night.

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