Meet the baby left with a zip-like scar on his stomach after undergoing the UK’s first surgery to save his sole kidney and complete an aortic bypass in a last-ditch effort to save his life.
Little Ivor Jeffrey now two, underwent a 12-hour operation at Great Ormond Street Hospital, London in December 2019 after his parents were told his survival rate was minimal without a functioning kidney.
After he lost a kidney aged one in 2017, his second had very little blood supply and as a result his blood pressure was extremely high.
Doctors determined that a unique and never-before tried operation was necessary to complete an aortic bypass in an effort to save Ivor and give him a meaningful life.
His mum and dad, Toni-Lee Jeffrey, 29, and Robert Jeffrey, 30, a civil servant, discovered the tot had severe heart complications after he turned blue and suffered heart failure just 10 days after being born in October 2017.
Ivor underwent the operation at Great Ormond Street Hospital, London in December 2019 – an aortic bypass and relocating his kidney in the hope of improving the blood flow, potentially saving his remaining kidney for a little longer.
The surgery lasted 12 hours – with doctors moving Ivor’s kidney from the right to the left side of his body – and left Ivor with a giant scar running across his stomach, which was held together by staples – resembling a giant zip across his tiny body.
He also developed a large haematoma in his leg caused by a cannula which was left in too long.
Doctors were happy with the results of the op, and now Ivor just needs monthly check-ups at Southampton Hospital and his blood pressure is taken by his parents regularly.
Toni-Lee, a stay at home mum, from Wareham, Dorset, said: “Ivor has been a medical mystery since the day he was born. His giant zip-like scar just goes to show how strong he has been amongst all of that.
“There is a possibility that he could have disabilities, and he will probably suffer with blood pressure problems forever.
“Eventually, he will need a kidney transplant. I try to stay relaxed, but I am constantly worried. When you’ve got an unwell child, fear is always there. The most important part is that he’s with us and happy. Now, he is a lot more stable and full of energy.”
Robert and Toni-Lee were over-the-moon to discover they were expecting their first child in January 2017.
But the couple’s bubble burst during the birth on 3rd October 2017 when they discovered there was something wrong with their little boy when he didn’t cry.
Ivor was born weighing 7lbs 3oz, but didn’t make a sound – so doctors tried to resuscitate him.
Toni-Lee said: “I started having contractions early in the morning, so Robert drove us straight to Poole Hospital.
“As I arrived at the hospital, my waters broke.
“The midwife told me I was dialating really quickly. My baby boy’s heart rate was dropping drastically, and my plans for a natural birth went completely out of the window.”
She was rushed for a caesarean.
Toni-Lee said: “He didn’t make a noise at first, and they popped a red hat on him because he wouldn’t warm up properly.
“He had mottled skin, but doctors assured me that was quite normal.
“After two days in hospital, we took him home. As the next week passed, he struggled to keep down any milk and he’d lost weight.”
Robert and Toni-Lee took the decision to phone the doctors to check if they should be more concerned over Ivor’s state.
“I phoned the doctor and told them ‘I’m worried that my son’s not eating. He seems really distressed,” she said.
“They sent an ambulance straight to our house and paramedics checked him over.
“They told me he was fine. After they’d left, I had a gut feeling that something wasn’t right.”
Toni-Lee’s mum, Lianne Barnett, 53, drove the couple and Ivor to Poole Hospital, Dorset.
Toni-Lee said: “When we walked into reception, I felt Ivor collapse in my arms. He looked blue.
“A group of doctors and nurses hurried Ivor to resus as he suffered heart failure. Robert and I couldn’t do anything but watch.
“After being sedated, Ivor was sent to intensive care in Southampton Hospital.”
Ivor had extremely high blood pressure but doctors were unable to diagnose what exactly was wrong with him.
He remained at Southampton Hospital for the first three months of his life, before being transferred to Great Ormond Street Hospital, London, for specialist treatment in December 2017.
Doctors needed to perform an operation to widen the blood vessels to Ivor’s kidney – called an angioplasty, an operation which is rarely performed on someone so young.
“On Christmas Eve 2017, we were allowed to take him home for Christmas,” Toni-Lee said.
“Doctors told us to inject Ivor with blood thinning injections twice a day, which was traumatic to do as his mother.”
The day after Boxing Day 2017, the family returned to Great Ormond Street – where they were informed that Ivor’s left kidney was failing due to the lack of blood flow.
In September 2018, Ivor had his left kidney removed, before his first birthday.
“He later developed a large haematoma in his leg and had an operation to remove it,” Toni-Lee said.
“Ivor took eight medications a day for his blood pressure. We spent most of 2018 in and out of hospital, trying to stabilise Ivor.
“Doctors explained to us that there were no other children like Ivor. He was one of a kind.
“We saw geneticists in the hope of discovering what may have caused his condition, but they found nothing.
“Then in 2019, a baby boy was transferred to Great Ormond Street from Greece. He was the first child we’d met that had the same symptoms as Ivor and had narrow blood vessels.
“At the end of last year, Ivor was unstable. There were multiple times that he went into heart failure, and medics calmly saved him. We didn’t realise the severity at the time.
“I didn’t panic because the staff didn’t. They were amazing.”
In November 2019, doctors began planning Ivor’s big surgery – relocating his kidney to improve the blood flow in his body.
Toni-Lee said: “The surgeon had never performed this operation on someone as young as Ivor. It would be a risky first. They even admitted he might not make it.”
On 3rd December 2019, Ivor underwent an aortic bypass, where the surgeon moved his right kidney to his left side. The surgery lasted 12 hours.
Toni-Lee said: “The operation went really well, and we stayed in Great Ormond Street for three weeks to be with Ivor.
“He was left with staples down his tummy that resembled a zip. I struggled to look at them.”
Since, Ivor has been sent home, but the family are still in hospital often. Ivor has a monthly kidney check-up at Southampton Hospital, and his parents test his blood pressure at home.
“There is a possibility that he could have disabilities, and he will probably suffer with blood pressure problems forever,” Toni-Lee said.
“Eventually, he will need a kidney transplant. I try to stay relaxed, but I am constantly worried. When you’ve got an unwell child, fear is always there.
“He’s still the bouncy little boy we hoped he could be, and doesn’t let his scar or medical needs get in the way of having fun!”