When a Littlehampton couple found out they were having a baby, they knew it would change their lives – but little did they know by just how much.
Hannah Johnston, 29, and her partner Andy O’Neill, 24, found out at the 17-week-scan their baby had a problem with his heart and were referred to Southampton Children’s Hospital for further scans.
Harrison O’Neill was born at 4.28pm on September 12, 2018, with a very complex anatomy, including a rare anatomical variant in his heart and two left lungs.
Hannah said the team on Ocean Ward saved Harrison’s life and she wants to raise £1,000 to help its work continue.
She said: “My 18-week-old son was diagnosed with a very complex anatomy and he has undergone three major surgeries so far on his heart. He suffered a peri-arrest and part of his heart stopped. This ward saved my son.
“They are limited on funds and I would love to raise money just to help them continue. I appreciate this ward may not mean anything to some people but you never know when you will need them. They are the only cardiac hospital close to us.
“It’s a shame, I know a few years ago they were going to close the ward due to funding. If they weren’t there, I would have to commute to London.”
A crowdfunding campaign was launched last week and so far more than £200 has been raised for the ward.
Hannah said: “We have been in and out of hospital as he caught bronchiolitis. He is still getting over it. With Harrison, his heart and lungs are not healthy enough to fight infections so any illness will see us in hospital. He is due to have more surgery in June.
“They have been fantastic, really supported me and my partner through tough times. The nurses on the ward noticed his heart rate decreasing and acted quickly, got him straight down to PICU [paediatric intensive care unit] and ventilated. This saved his life.
“Being my first child, it was hard to leave him every night as we couldn’t stay – we had a Ronald McDonald room. But they never took anything away from us, I could still feed him and change his nappy.”
Hannah and Andy were over the moon when they found out in January 2018 they were having a baby.
They said they were ‘scared and nervous’ as the baby was about to change their lives.
At the 17-week scan, Hannah saw the baby wriggling around, happily kicking away, then suddenly she ‘found out information no parent should have to hear’, she was told the baby had a problem with his heart.
They were referred to paediatric cardiologist Dr Tara Bharucha, who confirmed the baby had congenital heart disease. He had a double outlet right ventricle, a right aortic arch, atrioventricular septal defect, left artrial isomerism, AVSD and VSD.
The left artrial isomerism is a laterality disturbance affecting one in 10,000 babies, VSD is a hole in the wall separating the two lower chambers of the heart and AVSD is a heart defect in which there are holes between the chambers of the right and left sides of the heart.
Hannah was rushed to Southampton Hospital on September 11 as she had severe pre-eclampsia and Harrison was born the next day.
The birth was ‘pretty traumatic’ but she said having Harrison in her arms made this worthwhile.
They even managed to go home after a week as he was doing so well but as the weeks went on, he started going downhill.
Harrison was sleeping all the time and was too tired to play or interact with his mummy and daddy.
On the way to hospital one day, he gave Hannah a huge scare when he became unresponsive in his car seat. She had to dial 999 as the baby was blue and floppy, and she could not wake him.
Harrison spent the next seven weeks in hospital, had three surgeries, was ventilated three times due to pulmonary hypertension and suffered a peri-arrest, where part of his heart stopped.
Hannah said: “The third operation worked, they put a band on the pulmonary artery to control the amount of blood flow to the lungs. This should last until June time, when he has his full operation.”
Hannah and Andy were able to spend the whole seven weeks at the hospital with Harrison. They hope the operation in June will be his last.
Visit Weʼre raising £1,000 to help fund Ocean Ward at Southampton hospital to support their appeal.