Malu's Story, 37 Weeks and Older

Miracle Mum, Kirra shares Malu's story.

"Malu was born a happy healthy baby, until day four of his life when he began to become lethargic, stopped feeding properly, was vomiting and eventually became unresponsive. We rushed him to our local ED, by this time he was having mini seizures and was in and out of consciousness. Nobody knew what was wrong with him and the Paediatrician said he was probably dehydrated and suffering an electrolyte imbalance.

We were kept overnight, where his condition worsened. They brought up a lactation consultant to help us feed, as they thought he may also just be having feeding problems. She didn’t like the look of him at all and pushed them to do more blood tests on him. Later that night on his fifth day of life they discovered he had high levels of ammonia in his blood which was putting him into a coma.

He was rushed to the Royal Childrens Hospital and put in their ICU ward where he was administered medication to break the ammonia down and also had his blood filtrated to clean it. At five days old they drilled a little hole in his neck to drain his blood and clean it. They had to give him donor blood because he was too small to take the amount of blood they needed at a time.

It was later revealed to us that Malu had been born with a rare genetic metabolic condition called Isovaleric Acidemia. Basically, he was born missing the enzyme that helps him to break down protein, resulting in the toxic build up of ammonia which can damage his brain and nervous system. He will live on a low protein diet, and needs a special “unwell” plan organised with his specialists and the Royal Children’s Hospital. This way, whenever he becomes unwell due to his condition or contracts an infection, we can get him the help he needs to become well again; before he goes into another coma which they call a “metabolic crisis”.

He is now seven months old and has only had one re-admission, but it was dealt with before it became a crisis. He is enjoying low protein fruits and veggies and is also breastfed, as I was allowed to continue breastfeeding because it is low in protein."

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