Born at home in Kippax Leeds, Jacob’s heart defect was detected in his first week of life after being admitted to Leeds Children’s Hospital when he wasn’t feeding well…
Jacob’s mum, Iona, said:
“Jacob was born at home; everything was amazing and there was no sign immediately that he had any heart issues.
“Roll forwards to three days old and Jacob wasn’t feeding well and due to another undiagnosed condition called Hirschsprung’s disease – he was very bloated.
“We headed to hospital and were immediately admitted. After an avalanche of information, he started to improve. He very likely had Down Syndrome, very likely had Hirschsprung’s disease and then later his colorectal surgeon picked up that his heart didn’t sound as it should.
“Jacob was then diagnosed with complete AVSD. He was a COVID baby and during this time no family were allowed into see us in hospital, or our other children. Not even both parents could be there together!
Born at home during the pandemic, Jacob was diagnosed with complete AVSD after his colorectal surgeon noticed that his heart didn’t sound quite right during other checks.
“Jacob was put onto a few medicines and 24/7 monitoring in NICU. We had a nasty jolt when he was working harder than usual to breathe, and a doctor told us that he was in heart failure. Up until this point, I hadn’t realised he was in heart failure, so cue an absolute meltdown that our baby’s heart was giving up.
“At 5 weeks old, Jacob had to have ileostomy surgery to help manage the Hirschsprung’s disease.
An ileostomy is an operation to bring the end of your small bowel to the outside of your tummy to form a stoma.
“Having to go through this knowing Jacob was in heart failure had us so worried we weren’t sleeping or eating. I had convinced myself that he wouldn’t make it through surgery because he was so ill and very small. Thankfully he sailed through the surgery and recovered like a superhero!
Jacob had his full heart repair at the Leeds Congenital Heart Unit when he was 7 months old.
“Two weeks later Jacob was scheduled for a PA band surgery to buy him some time before he had to have the main repair to his heart. The surgery went well but afterwards he developed sepsis. This meant he needed a blood transfusion and he had to be intubated again. It felt like he couldn’t catch a break!
“Jacob recovered slowly and was allowed home a couple of weeks later, on regular medicines to manage his blood pressure. Throughout this whole time, we were so scared that he might catch COVID as he was so very vulnerable to everything.
“At 7 months old, Jacob was brought in for the full repair to his heart. The surgery went very well, but in true ‘Jacob fashion’, he developed sepsis and had to be transferred back to PICU and intubated again. Following his recovery and up to present his heart hasn’t been a cause of any concern, he doesn’t require any medicines for it and has yearly check-ups.
“Compared to the trauma of those early days in his life he is like a different child.
“Because of Children’s Heart Surgery Fund, we were able to stay in the parent accommodation when Jacob was having his second heart surgery, and some essentials were provided for us.
“Being able to be close while he was recovering in PICU made a huge difference to us.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Jacob every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
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