Amy’s daughter received open heart surgery at just 11 weeks old. Amy’s little one is now three years old and Amy tells us all about her daughter’s CHD journey to date.
Amy is also pregnant and knows her baby is already a heart warrior too.
Amy, known online as Asphodel Moon, is a heart mum with a love for online gaming. Read all about her gaming fundraiser for CHSF here.
Amy said:
“When my daughter was 9 weeks old, she had her 8-12 week check up with her local GP. He heard a heart murmur and sent us straight to the children’s ward of Calderdale hospital.
“Here she received an echocardiogram which confirmed to me that she had a hole in her heart, also known as a Ventricular septal defect (VSD). It was explained to me that where the hole was in her hearts septum, that too much blood was being pumped to her lungs and was making them gather fluid, this in turn was making it difficult for her to breathe.
“She was put on a nasogastric tube which went in through her nostril and straight down into her stomach, this would mean less energy was used when feeding as food would just go directly down her tube; she was now fed a special formula that was measured in specific amounts that would help her gain weight.
“She was in the children’s ward for five days, which included a day trip to Leeds General Infirmary where they did another echocardiogram and confirmed the VSD, telling me it would be a minimum of two surgeries. We were put on a waiting list.
“In December 2021, when my daughter was only 11 weeks old, I got the phone call that said they had a bed for her and they could do the operation in two days time.
“This first operation would be an open heart surgery that would involve putting a band onto the Pulmonary Artery which would slow blood flow to the lungs, further helping with growth and thriving.
“In order to fix the hole further down the line, she needed to be a lot bigger as the hole was in a difficult place to reach so the longer they could leave it before the second surgery, the better.
“I was told the surgery could take up to eight hours and the only reasons they would contact during the day would be once the operation was complete or if they needed my parental consent should something happen.
Amy’s daughter had open heart surgery at 11 weeks old at the Leeds Congenital Heart Unit.
“Watching my daughter go under the anaesthetic was one of the worst things I’ve had to witness and leaving her there was one of the hardest things I’ve ever done. She was only in theatre for three and a half hours before being transferred to PICU. Seeing your entire world lying there covered in tubes and wires, seeing the scar on their chest is utterly heartbreaking but knowing she made I through the operation and was in that moment okay, was a relief.
“I want to give a mention to her surgeon, Giuseppe Pelella, because without him, we wouldn’t be at the point we are today. She spent one night in PICU before being transferred to the High Dependency Unit. Here she had tubes and wires removed, came off morphine and went onto Calpol and continued to improve.
“After just one night in HDU, she was moved to the children’s ward to continue healing and being monitored; here she started back on her tube feeding. After three days in the main children’s ward, we were discharged and sent home with lots of medication and instructions to follow for wound care and healing.
“Following her first operation, my daughter was seen regularly by her cardiologist, Dr Grazia Delle Donne who monitored her growth, her heart and how the band was working.
“Earlier this year, I found out I was pregnant. I’ve had extra scans with cardiology and we’ve discovered this baby also has a congenital heart defect.”
“In September 2022 we were told that the VSD had started to shrink, which was amazing news because at the very beginning, we were told it was too big to do that naturally. By August 2023, it had shrunk further and Dr Delle Donne said she would make a good candidate for the cardiac catheter procedure.
“This meant a much higher chance of no further open heart surgery to fix the VSD as the catheter goes in through the groin, and they could patch the hole and balloon the PA band in the same procedure.
Amy’s daughter is now three years old.
“In January of 2024, my daughter underwent her cardiac catheter procedure. This second time seeing her go under the anaesthetic was worse as she was 2 years old – so reacted a lot differently to the first time as a baby.
“She also had a Transoesophageal echocardiogram which is an echocardiogram but down the throat as that gets a much clearer picture of the heart as the ultrasound doesn’t have to be navigated around ribs and muscle etc.
“She was in surgery for about an hour and a half, maybe two hours. When I returned to the children’s ward, I was told that when they had a look at her heart through the transoesophageal echocardiogram, they could not find the VSD, so all they had to do was balloon the PA band. We were in the children’s ward for one night and discharged the next morning.
“My daughter is now 3 years old, full of energy and incredibly sassy. She’s extremely independent and such a chatterbox. She’s a massive fan of Halloween and Nightmare Before Christmas (wonder where she gets that from 😉) but also loves pink, Barbie and unicorns. Her latest obsession is pretending to do my make-up.
“Earlier this year, I found out I was pregnant and due to my first baby’s heart condition, this pregnancy was considered high risk. I’ve had extra scans with cardiology and I am under foetal medicine as we’ve discovered this baby also has a congenital heart defect.
“Currently the diagnosis is a Right aortic arch (one of the arteries arches around the trachea instead of bypassing it but we are waiting to find out if it is actually a Double aortic arch (two arteries arching around the trachea causing breathing issues). If it confirmed to be the latter, I will have a second heart warrior baby that requires surgery from the cardiology team.”
Amy is supporting CHSF this November with a Game4Hearts fundraiser!
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