‘Tough’ Bolton six year old recovering from liver transplant

Ivy Reed was diagnosed with a rare metabolic disorder, Propionic acidemia, when she was just two weeks old.

Ivy, who also has non-verbal autism, was on the waiting list for a new liver for a year and a half, after doctors recommended the procedure.

Dad Carl and his wife, Ivy’s mum Phillipa, ‘looked like she’d seen a ghost’ when the call came through on Friday, February 16, that a liver was available – with the family then rushing to Leeds Children's Hospital for the procedure.

Carl said: “Even though we’d known she’d been on the list, it was a big decision to go ahead with the liver transplant. What happens with Ivy’s condition, if they tend to have quite a rough time and lots of hospital visits they recommend a liver transplant.

“It’s not every person with Ivy’s condition that gets a liver transplant, so in theory, it was our choice.”

“The liver consultant did say to us that it’s high-risk surgery anyway, but it’s double higher risk on a patient with Ivy’s condition,” the 46-year-old father added.

Carl and Phillipa Reed with daughter Ivy

‘The surgeon told us you’ve got to take a year out of your lives’

Ivy is now in recovery and has ‘a big scar’ following the surgery, which took more than 10 hours.

Doctors have told the family that Ivy can expect to leave hospital after six weeks. Before, Ivy’s longest hospital stays were just two weeks.

She will then need to isolate for four months due to the risk of infection.

Carl said: “As soon as she’s discharged we have to go back to Leeds every week, twice a week, for her to have checks for three months. After three months it goes to once a week.

“The liver surgeon said to us ‘you’ve more or less got to take a year out of your lives. Really you’ve got to put your life on hold for 12 months once she’s had the transplant’.”

Ivy will need to take immunosuppressant medicines for the rest of her life to reduce the risk of her body rejecting the transplanted liver.

In 2022, Ivy had a seizure and her heart stopped after, Carl says, she caught a cold.

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Carl said: “It’s hard really because we don’t know when we can relax.

“When can we kind of relax a little bit? At any point her body can reject the liver.

“She has got quite a bad cough and cold, is that going to get worse because she’s on anti-rejection drugs? It’s quite nerve-wracking.”

Ivy and dad Carl (Image: Carl Reed)

One of the family’s good friends has now set up a JustGiving page to raise money to support the family.

The family hopes to use some of the money raised to transform their spare room into a sensory room for Ivy’s isolation. They hope to fill the room with toys and decorations of Ivy’s favourite TV show, Peppa Pig.

‘When you’ve got a poorly child you just want to concentrate on that child’

Mum Phillipa has not been in employment since Ivy’s diagnosis, and is currently spending all of her time in Leeds alongside her daughter, sleeping on a pull-out bed next to Ivy.

When not in hospital, 44-year-old Phillipa, who receives £76.75 weekly in Carer’s Allowance from the government, also has to feed and give medication to Ivy every three hours – day and night – through a tube in her stomach, only receiving respite when Ivy is attending Green Fold Special School.

Ivy loves Peppa Pig (Image: Carl Reed)

The family also receives the highest rate of Disability Living Allowance, currently set at £101.75 per week.

Running the Hype Hair salon on Bolton Road in Darwen, Carl is spending £60 to £70 per day to travel between Egerton and Leeds just to see his daughter in hospital.

After working in the morning, Carl walks his dogs before making the gruelling drive to Leeds.

He doesn’t get home until some time between 10pm and midnight, before the cycle repeats.

‘Bills have to be paid’

The financial situation is taking its toll on Carl and Phillipa’s mental health.

Carl says he has arranged payment holidays for some repayments, such as his business’ Covid bounce back loan, but other companies have insisted on immediate payment, threatening his credit rating.

He said: “It’s very tiring. Me and my wife have different roles, my wife is at hospital and she has to concentrate on Ivy.

“We’ve always had this discussion that I’m the opposite. I’m worrying about Ivy, but I have a business – I can’t just leave it completely because I’ll lose it.

“Bills have to be paid, rent has to be paid. We have dogs and they can’t really be left on their own for days on end.

“Leeds is 140 miles there and back, and obviously food when you eat there – my wife is there every day so she’s going to the local Tesco on the hospital grounds. All those little things.

“I’m trying to go to work as much as I can and do some work, but I’m conscious I need to go and see Ivy, and then I’m also thinking in the back of my head ‘that bill needs paying next week’ or ‘the rent’s due’.”

Ivy will have to isolate for four months after she returns home (Image: Carl Reed)

He added: “It’s not like we’re going to lose our house or anything like that, it’s just very stressful. I have a hair salon, I only have one member of staff, but obviously, I still have all the bills coming in from business as well as home, so I have rent, council tax, gas and electric, and the wage for my junior.

“It’s tough, my wife’s parents have helped quite a lot. I’ve had to contact a few of my financial commitments and just ask if they could help.

“I’ve had to contact the bank and explain the situation and ask if there’s any way to have a payment break or payment holiday.

“I wouldn’t say it was dire, it’s just an extra stress. When you’ve got a poorly child you just want to concentrate on that child, but in the back of your head you are thinking ‘right, how am I going to pay that bill’, that kind of thing.”

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‘My mum wanted to ring an ambulance’

Last week, Carl collapsed at home after visiting Ivy in hospital.

He said: “My wife doesn’t eat that well at hospital and I hadn’t eaten, and I actually ended up collapsing in the kitchen on Thursday night.

“I was literally on my hands and knees on the kitchen floor. I had to reach for my phone and ring my mum wanted to ring an ambulance.

“I was like ‘no, you’re not ringing an ambulance’.

“I hadn’t been eating very well and it’s quite stressful, you’re rushing to get to hospital and then when I’m on my way home I’m rushing home because I know the dogs have been on their own for eight, nine, 10 hours.”

However, no matter what stress Carl and Phillipa feel, he is always sure to remember that, for Ivy, it’s much worse.

He added: “Whenever I’ve been driving back from Leeds and I’ve thought to myself ‘this is really tiring’ and ‘this is hard work’, I just think to myself ‘she’s six and she’s going through a lot more’.

“That kind of just tells you to snap out of it. It’s just one of them things. She’s had it now for six years, you’ve just got to cope with it.

“She’s a tough girl, so she’ll cope with it.”

If you have a story, I cover the whole borough of Bolton. Please get in touch at jack.fifield@newsquest.co.uk.