A couple from Ramsey who experienced “every parents’ worst nightmare” when both their children were diagnosed with heart conditions, have raised more than £11,000 to help them stay close to Great Ormond Street Hospital.
Last Saturday, Chloe and Matthew Rosamond welcomed their first daughter, Phoebe Rose, to the family – a sister for 18-month-old Samuel.
But less than 24 hours after the birth, Phoebe was rushed to Hinchingbrooke Hospital and diagnosed with a rare heart condition, before heading to Great Ormond Street for major surgery.
“We didn’t know anything was wrong with her and there were no problems detected during the pregnancy,” Chloe, 32, told The Hunts Post.
“I just noticed she was breathing quite fast and my mother’s instinct just said something was wrong. I had had a baby less than 24 hours before and the cardiologist said she had to have open heart surgery.”
Phoebe was born with truncus arteriosus – a rare type of heart disease which means she only has one blood vessel coming out of both ventricles.
To survive, the newborn has already undergone two massive operations, one to fit a donor artery and another to fix a ‘kink’ in the new vessel.
Her chest is even yet to be closed, with her parents able to watch her beating heart before a final procedure sometime today (Friday).
“We’ve nearly lost her three times since then and she’s hanging on by a thread,” Chloe added.
“We’re living hour by hour. All of the medical team have said it’s absolutely amazing that’s she’s been through all this and are quite hopeful with the recovery.”
Less than a week after Phoebe was rushed to hospital though, Chloe came home to find Samuel “floppy and blue” and couldn’t wake him.
“It’s just horrific and it felt like a nightmare,” she said.
“When I found Samuel I thought ‘I’m going to wake up in a minute’. People watch this stuff on TV and they think how do you cope? You cope by thinking it’s not real and because you’re forced to.
“You have top put on a brave face for your child. Phoebe has no idea, but for Samuel I had to make decision to stay with him or go and see Phoebe [before her first operation] and that was incredibly difficult. I remember thinking ‘what do I do?”
Also diagnosed with a rare heart condition, Samuel was found to have Kawasaki disease and needed to be hospitalised too after developing hypoglycaemia – a deficiency of glucose in the blood.
Thankfully, Samuel is now out of hospital and the family are working to get Phoebe better too, but need help affording accommodation near the hospital where homes cost around £250 a night.
At the moment, less than a month after giving birth, Chloe is a 15 minute taxi ride from her newborn and has to walk up six flights of stairs to get to bed each night.
“I can’t hold her or hear her cry because she’s completely lifeless,” she said.
“We put gel in her eyes and a sponge in her mouth but she doesn’t respond. What I would give to be at home changing a nappy and doing something so normal, and not worrying about her making it through the next hour.”
The family have set up a fundraising page to help them stay close to Phoebe, and Chloe says she wants to be able to walk out of the hospital with a cheque of leftover money for staff.
“Life is such a blessing and you always think it will be fine then you end up in a situation like this,” she said.
To donate, visit https://www.justgiving.com/crowdfunding/Phoebesheart?utm_id=106&utm_term=mvpxmynGW
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