The World's Most Tragic Baby With Rarest Condition

Barrow Dad ‘Maternity staff helped us cope with nightmare’

THE father of a seriously ill baby says he would be devastated if Furness General Hospital lost its maternity unit.'

 VIGIL Gemma Moorby and Jeffrey Holt keep watch over their baby Jasper Emily Barber

Jeffrey Holt’s tiny son Jasper was born by caesarean section on Monday after health problems were picked up by medical specialists at the 20-week scan.

The father-of-two says the help and compassion from staff helped him and partner Gemma Moorby, 26, deal with the news.

He admits it would have made their nightmare even worse if they had had to keep travelling out of town for appointments as well as caring for their eldest son, 19-month-old Oscar.

The 31-year-old explained how a routine scan turned their world upside down.

Mr Holt, of Leece Lane, Barrow, said: “We were told that Jasper had problems with his kidneys and brain. It was devastating. Days later we had to go to Newcastle. It has been a total nightmare. We were initially told the baby had a brain development problem called lissencephaly. Subsequent scans showed that wasn’t the case and what was wrong was basically unknown. As well as the other problem he also had a small jaw.

“When he was born on Monday his heart and kidneys were working fine but he was put straight on a ventilator. He has a cleft palate and his kidneys are shaped like a horseshoe because they had not separated.”

Mr Holt said that the day after he was born, at Newcastle’s Victoria Royal Infirmary, 5lb 2oz Jasper had to have surgery, which included reconstructing his lower abdomen.

He added they had been told it was likely a chromosome problem was responsible but Down’s syndrome has been ruled out.

Mr Holt continued: “They have been doing lots of tests and it could be years before we find out what chromosome has been affected.

“Doctors have said it could be that it is totally unique and have named it ‘Jasper Syndrome’.

“He came off the ventilator on Thursday and a scan that night showed he had cysts on his brain. He also had a bit of a setback on the same day and had to have a little bit of oxygen. Next week we will see the cleft palate team and he will have an MRI. We don’t know how long we’ll be here but as soon as he’s comfortable enough he will be moved back to Furness General.”

He said if the FGH maternity unit wasn’t there it would have made their nightmare even worse.

Mr Holt added: “They made such a difference. They explained everything to us and have been great in helping us understand what was going on.

“It was really refreshing to have such dedicated and compassionate staff to deal with. You can’t beat being at your local hospital.

“I would be pretty devastated if we lost the maternity unit. It would have added so much more stress if we had to keep travelling out of town and couldn’t just pop up to the hospital when we needed to. It would have made our nightmare so much worse. We can’t thank them enough for their care.”

Sascha Wells, head of midwifery for University Hospitals of Morecambe Bay NHS Foundation Trust said: “We’re very pleased that Jeff and Gemma were happy with the service we provided and we will ensure we pass their thanks onto all who were involved in the care they received as a family.”

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