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Aria Leigh Foreman was born at 27 weeks on November 19, 2021, after her mother, Kayleigh Coyle, was rushed in for an emergency C-section. The 27-year-old school worker, from Glasgow, went to the hospital after noticing reduced movement, and she was told to return the following day for a growth scan.
When doctors noticed Kayleigh’s baby’s heart rate was dangerously low, they made a “30 second crash call” and rushed her in for surgery, reports The Daily Record.
Aria was brought into the world just one hour later but she was taken to the neonatal intensive care unit at the Princess Royal Maternity Hospital in Glasgow, where she spent three months of her life before being transferred to the The Queen Elizabeth University Hospital.
As well as coping with health issues associated with her premature birth, Aria was diagnosed with a rare genetic disorder called complete DiGeorge syndrome.
The condition means Aria was born within a thymus gland – which produces white blood cells – and is vital for fighting infection.
Less than one per cent of children are born with the condition, which leaves them immunocompromised and is typically fatal after two years.
Parents Kayleigh and Liam were told their daughter would be one of under 70 children to receive a pioneering and life-saving thymus transplant at Great Ormond Street Hospital (GOSH) when she weighed enough.
She has now been allowed to go home after nine months in hospital.
Kayleigh said: “Aria was finally discharged on August 4 after spending nine-months of her life in hospital and has check-ups every two weeks now.
“When she was diagnosed with complete DiGeorge syndrome it was really scary because no one could prepare us as no one really knew much about it.
“She is still on a lot of medication including antibiotics every day in case she gets an infection.
“We need to keep her very isolated so she is safe and have only recently started letting people come to meet her.
“Aria had the thymus transplant in March as we had to wait until she weighed two and a half kilograms.
“She went back for a biopsy three months later. As far as I’m aware, there is nothing to say it hasn’t worked but the doctor said we need to wait until it has been nine-months to really see.
“She is a wee trooper and looking at her you wouldn’t know half of what she has been through.”
But the traumatic journey has been hard for the full family as new parents Kayleigh and Liam had to watch their first born struggle to breathe.
“The pair spent a lot of time apart when Aria was moved to a ward, as Kayleigh stayed Monday to Friday and Liam stayed on weekends.
Kayleigh continued: “Six months of our lives were full of bleeping monitors, tubes, bloods, scans, bad news, good news and so much more.
“Nothing could prepare you for what we went through and what we watched our girl go through.
“There were days when she needed to be reminded to breathe, days we watched them resuscitate her, days we held her down while doctors tried to find a vein for bloods and days we watched her numbers drastically decrease on her monitor hoping they would go back up.
“Some days they pulled the emergency buzzers and the full team were in the room within seconds.
“But everyday we sat there helpless as our girl’s life was in the hands of all these doctors and nurses. We spent crazy hours sitting at her bedside.
“Our wee baby girl would not be here today without them.
“It is Aria’s first birthday on November 19 so we’re going to host a fundraiser for both hospitals and try to give something back to them.
“The staff have become more like family to us and they are absolutely amazing.”
Donations to the fundraising page can be made by clicking here.
What is complete DiGeorge syndrome?
DiGeorge syndrome is caused by a problem called 22q11 deletion.
This is where a small piece of genetic material is missing from a person’s DNA.
The severity of the condition varies and it can cause a range of lifelong problems, including heart defects and learning difficulties.
Children with complete DiGeorge syndrome are born without a thymus, which produces T-cells.
These are white blood that have a vital role in fighting infections.
Only around one to two per cent of children with the rare DiGeorge syndrome are born without a thymus and it can be life-threatening.
Great Ormond Street Hospital offers a pioneering thymus transplant, using a technique originally developed in the US.
It is thought around 70 children have received a transplant at GOSH so far.
The operation takes relies on a donation of healthy thymus tissue, taken from children undergoing open heart surgery.
The tissue needs to be removed in order to gain access to the heart, and its removal has little affect on the donor, so many parents are happy to donate it.
The tissue is then grown in the laboratory before being implanted into the thigh muscles of the patient.
This allows them to develop T-cells and give them the ability to fight common infections.
The children who have the transplant will be able to come off preventative measures such as antibiotics and immunoglobulin injections and will be able to attend nursery and school.
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