Baby Jasper baffles doctors by being born with never-before-seen condition

May 2024 · 4 minute read

The baby who's baffling doctors with a mystery condition they've never seen before

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Doctors have been left baffled after a baby was born with a condition they had never seen before.

Jasper Holt’s illness is believed to be so unique that medics don't have a term for it. Instead, they have dubbed it ‘Jasper’s Syndrome’.

He was born on April 8 with a cleft palate, conjoined kidneys, a small jaw, and cysts in his brain.

Jasper Holt was born with a condition that doctors have never seen before - they have dubbed it 'Jasper's syndrome'

Jasper Holt was born with a condition that doctors have never seen before - they have dubbed it 'Jasper's syndrome'

Jasper, pictured with parents Jeffery Holt and Gemma Moorby, was born on April 8 with a cleft palate, conjoined kidneys, a small jaw, and cysts in his brain

Jasper, pictured with parents Jeffery Holt and Gemma Moorby, was born on April 8 with a cleft palate, conjoined kidneys, a small jaw, and cysts in his brain

WHAT ARE THE SIGNS OF JASPER'S CONDITION?

A cleft palate - he will see cleft palate specialists this week

A small jaw

Brain cysts - he is to have an MRI scan this week

Conjoined kidneys - he had surgery at one-day-old to have his kidneys separated

At just one day old he had to undergo surgery to reconstruct his lower abdomen and separate his kidneys.

‘We were initially told [before he was born] that he had a brain development problem called lissencephaly,’ said his father, Jeffrey Holt.

‘However, subsequent scans showed that wasn't the case and what was wrong was basically unknown. 

‘When he was born his heart and kidneys were working fine but he was put straight on a ventilator.

‘He has a cleft palate and his kidneys were shaped like a horseshoe because they had not separated.’

Jasper, who is now one-week-old, was born at Newcastle's Victoria Royal Infirmary, weighing 5lb 2oz.

Mr Holt and Jasper's mother Gemma Moorby, 26, have now been told he is most likely suffering from a chromosomal abnormality.

Jasper, pictured with his parents and brother, Oscar, is most likely suffering from a chromosomal abnormality

Jasper, pictured with his parents and brother, Oscar, is most likely suffering from a chromosomal abnormality

Mr Holt said: ‘They have been doing lots of tests but it could be years before we find out which chromosome has been affected.

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

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‘He came off the ventilator a few days after he was born but 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.’

At just one-day old he had to undergo surgery to reconstruct his lower abdomen and separate his kidneys

At just one-day old he had to undergo surgery to reconstruct his lower abdomen and separate his kidneys

Jasper, who is now one-week-old, was born at Newcastle's Victoria Royal Infirmary, weighing 5lb 2oz

Jasper, who is now one-week-old, was born at Newcastle's Victoria Royal Infirmary, weighing 5lb 2oz

Mr Holt, of Barrow, Cumbria, explained how a routine ante-natal scan turned their world upside down and saw them travel 117 miles to Newcastle.

The 31-year-old said: ‘We were told that Jasper had problems with his kidneys and brain. It was devastating. Days later we had to go to the hospital in Newcastle. It has been a total nightmare.’

Ms Moorby was under the care of the couple’s local Furness General maternity unit until the baby’s condition was discovered and she was referred to Newcastle.

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

‘We can't thank them enough for their care.’

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