Baby with ‘world first’ condition stops breathing 20 times a day
LITTLE IVY ALLEN DIAGNOSED WITH GENETIC DEFECT
ABABY born with a defect that stops her breathing “up to 20 times per day” could be the first person in the world diagnosed with such a condition.
Ivy Allen was born at Hull Royal Infirmary on September 21, 2018, at 34 weeks weighing just 3lb 2oz - but doctors had feared that figure might have been even lower.
Her parents, from Beverley, knew she was going to be born with deeply complex care needs following news at the 20-week scan that she had chromosomal abnormalities.
But even now, the extent of those difficulties might still not be fully apparent.
That is because Ivy’s condition affected by the deletion of chromosome 7q in her DNA - is so rare that her family have failed to identify any other cases of it happening anywhere else in the world.
“We looked everywhere,” dad Danny, 29, said.
“Everywhere - Canada, the USA but this sort of chromosomal deletion just hasn’t been recorded before.”
It means the prognosis for Ivy, and what the future may hold for her, is still highly uncertain.
Currently, mum Betsy, 31, acts as her carer 24/7, while dad Danny reduced his working hours to three days a week following his daughter’s birth to help support the family and Ivy’s care.
As well as the chromosomal abnormalities, Ivy was also born with a condition called Agenesis of corpus callosum (ACC) - a congenital defect which means she does not have the structure which connects the two sides of her brain.
Those issues mean Ivy has to be fed via a feeding tube and requires round-the-clock care, including by her ten-year-old step-brother Joshua.
“He’s a ten-year-old boy and he can do all this care work, including feeding her, and he loves it - he’s really taken it on,” Danny said.
But in spite of the great uncertainty over her future that has persisted since birth - including her expected lifespan - Ivy has blossomed into a bubbly two-yearold as she continues to defy the odds.
“When she was born, the doctors didn’t even think she would be capable of life,” Danny said.
“They didn’t think she would survive. With all these issues day by day, it was a miracle that she was still going.
“But she’s brought us all closer together. It is hard work but the joy
she has is just amazing.”
But Ivy’s health problems still persist - most recently manifesting in deeply concerning episodes of apnea, when her breathing stops without warning.
These episodes can happen between ten and 20 times every day, Danny said, and even once resulted in mum Betsy having to perform CPR on little Ivy to save her life.
Most often, however, it can be rectified by putting her on a ventilator.
And because doctors are unsure as to what genes Ivy is missing, they do not know what the effects might be on her physical and emotional wellbeing going forward.
Danny said Ivy’s frustration with her circumstances has recently come out in a tendency to bang her head on things - a habit exacerbated by a lack of ability to feel pain.
“She loves life, but she can find it frustrating,” Danny said.
“When she’s happy, the joy she can bring is infectious - she can make anyone happy and she’s very happy in herself, especially around family.”
With Ivy and her family soon due to move from Beverley to Hull to be near to a specialist school, Ivy’s aunty Jane has set up a gofundme page to help fund a sensory room for her to enjoy.
It is hoped it will help improve her sleep and make her feel more relaxed.
Anyone wanting to donate, visit www.gofundme.com and search “Ivy Shirley’s Sensory fund”.