The parents of a baby girl who died of a rare heart defect are preparing to honour her memory.
Lisa Halliday and Tom Jones, of Carley Hill, Sunderland, were told their baby Hope had heart problems at their 20-week scan.
Hope was born six weeks early in May last year by emergency cesarean at Sunderland Royal Hospital.
She was transferred to the Freeman Hospital in Newcastle where she spent the next seven months battling numerous health conditions.
Hope was diagnosed with a defect that causes the heart’s two major arteries – the pulmonary artery and the aorta – to connect to the right ventricle.
In a normal heart, the pulmonary artery connects to the right ventricle and the aorta connect to the left ventricle.
Hope also had several holes in the heart, was deaf in one ear, and was diagnosed with pyloric stenosis – a condition that narrows the opening from the stomach to the first part of the small intestine.
At just four weeks old Hope underwent her first operation in the Newcastle Freeman Hospital, but it was unsuccessful and resulted in her needing to be fed intravenously her whole life.
Lisa, 40, said: “Hope got blood clots due to the constant use of central lines which resulted in necrosis of her left hand and she lost parts of her fingers.
“These blood clots later caused her to have several strokes which caused severe irreparable brain damage, sight problems, inability to swallow and partial paralysis on the left side of her body.
“She was also suffering from epileptic seizures and was diagnosed with severe cerebral palsy resulting from the brain injury.
“Hope’s breathing deteriorated so bad that she was reliant on a specialist breathing support machine called vapotherm.
“The hospital thought this would improve over time but it just got worse to the point she had to undergo a pulmonary banding operation which is open-heart surgery without the need for a bypass machine.
“We were told by consultants, doctors and intensivists that she was unlikely to survive this operation but she fought through it and got herself off the ventilator in less than 24 hours and out of intensive care within two days.”
However, the operation was unsuccessful and Hope still needed the breathing system.
Lisa said: “Around October, Hope came down with pneumonia and again we were told she was unlikely to get through it but she fought it off with little to no extra support needed.
“But her breathing was still deteriorating so it was decided her only chance of longer time survival would be to undergo her full heart repair which was going to happen early this month.”
Hope’s health started to deteriorate quickly with her breathing around the end of November and doctors spent weeks doing blood tests daily, x-rays, urine samples, saliva samples and were saying it was a mystery as to why she was getting worse.
Lisa said: “For three weeks we were pretty much begging for them to do a CT scan every day to everyone we spoke to as that is how her first bout of pneumonia was found and the hospital refused until she was dependent on 80-100% oxygen.
“They did the CT scan and found she had again got pneumonia on her other lung and was rushed to the paediatric intensive care unit a couple of days later in the early hours of the morning.”
As Hope was put on a ventilator her family was given the devastating news she was unlikely to survive the next couple of hours.
Lisa said: “Hope somehow found the strength to fight through it and fought through another respiratory arrest the next morning.
“On the Sunday she was doing well and the doctors were optimistic as they were managing to wean her ventilator from 100% support to 60% and they thought she was turning a corner. On Monday morning she had another respiratory arrest and this time she wasn’t responding to treatment.
“We were told that Hope was dying and there was nothing more they could do for her.
“We were taken into a side room with doctors and a nurse came in and whispered to a doctor then we were told Hope was now having a cardiac arrest she was put into our arms and passed away a few mins later.”
Hope died on December 14 last year due to coronavirus restrictions only met her older sisters, Abigail, 13, and Holly, 8, twice.
During her short life she never once left the hospital.
Tom, 34, said: “Hope had never seen outside the hospital, she never got to meet family in her seven-month life other than her two sisters twice and had her life snatched away from her just weeks before her life-saving operation.”
Now, the couple are planning to set up a charity ‘The Hope Jones Memorial Fund’ in her honour that will help other families.
Tom said: “The charity we are attempting to set up is to help parents struggling with the financial demands of having to stay over at our local hospitals who have babies mainly in the heart unit at the Newcastle Freeman Hospital where Hope spent her life but also Sunderland Royal and the Royal Victoria Infirmary in Newcastle.
“This is help that we ourselves received for help with travelling expenses and costs of staying at the hospital.”
The couple have launched a fundraising campaign and need to raise more than £2,500 so that they can register as a charity.
Tom said: “We are still coming up with fundraising ideas but are hugely limited to what we can do with coronavirus and all the lockdowns.
“At the moment we are relying on crowdfunding to try to get it all off the ground and get to a point we can register it officially as a charity.”
To donate to the campaign, visit here