Summer was born with a ventricular septal defect (hole in the heart). Here, her mum Michelle tells their story:
Summer was born in 2018 and I was induced for low birth weight. On induction day, her movements were minimal, so they took us for an emergency Caesarean section. On arrival, Summer was a tiny 5lb 6oz.
We spent ten days in hospital for various reasons and, after a couple of days, they picked up a heart murmur. We were placed under the neonatal pediatrician team, then sent home as they said a small hole can close by six months.
Around 12 weeks, Summer started to refuse milk and stopped gaining weight. Our pediatrician referred us to a cardiologist, who visited our hospital. Summer was found to have a moderate VSD (ventricular septal defect) and it was causing failure to thrive and heart failure. She was placed on medication.
At five months old, Summer caught bronchiolitis and although we visited the doctor, I wasn’t happy with his answers. She seemed quiet and more sleepy than her normal self, so I took her to A&E. She had pneumonia.
The cardiologist waited until six months for the VSD to close, and after six long months of feeding 1oz every hour, they decided to operate. Summer was also starting to get behind on her development and wasn’t sitting by 11 months. Her operation was in June 2019.
It was a very hard day and handing her over broke my heart. But she needed this operation.
She spent a day in ICU and, since then, has sprung back amazingly! She has caught up with all her milestones.
Summer is still tiny (only 25lb) but she is mighty! A real fighter!
If we had known about Summer’s VSD before she left hospital or even at our extra growth scans, I feel her treatment would have been a lot quicker. Instead I had to push to be seen, because my instinct told me something wasn’t right. She would have had a plan, we could have prepared ourselves, instead of it all hitting us like a brick.
We also wish we had known more about her condition. She was never offered a feeding tube – now I know, I would have asked for it.
Find out more about ventricular septal defects and other types of heart defects here.
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