Scottish baby boy with no immune system must live in ‘bubble’ or a cold could kill him
Imagine being a new parent and not being able to pick up your crying baby until you have scrubbed your hands clean for three minutes.
Then you have to put on a special gown, and if you touch your face or hair accidentally you must scrub up again. You can’t take your infant home or out for a walk.
Some parents don’t have to imagine. Linsay and Graham Gartshore’s baby son Frankie was born without an immune system and cannot fight the simplest of infection.
Even the common cold passed on by a kiss from mum or dad could be fatal. Chickenpox and cold sore virus (herpes simplex) can also be dangerous.
Linsay, 35, from Fife, Scotland, currently has a cough and so she hasn’t been allowed to see Frankie for the past week.
He was born with severe combined immunodeficiency (SCID), which is caused by a mutation in a child’s genetic make-up
He is staying in an small enclosed area protected by a cocoon of sterilised, filtered air, designed to protect him from bugs or bacteria, at the Great North Children’s Hospital in Newcastle. The tot is awaiting a bone marrow transplant – without this he would be expected to die within a year.
Linsay said: “It’s been difficult as a mother not being able to see and cuddle Frankie while I’ve had a cold.
“We also have a four-year-old son, Rudy, who has barely seen his younger brother because he’s not allowed to visit.
“It’s all been a massive shock to the system and this is a difficult time, but Frankie is doing well and we are glad he is in the best possible place.” Initially, doctors thought Frankie had a simple chest infection.
“When he was six days old, Frankie was quite congested, he had a cough and was really red in colour,” explained Linsey. “A few days later when he became wheezy we took him to hospital to be on the safe side.
“His oxygen saturation levels were low and he was admitted to the neo-natal unit. The doctors suspected he had bronchitis.”
The boy was put on oxygen but when he didn’t get better, medics ran tests and it was then, at a few weeks old, they confirmed he had SCID.
The condition is estimated to occur in one baby in 58,000 in the UK.
It first made headlines in the 1970s and 80s with David Vetter — the original “bubble boy” — who lived in a specially constructed sterile plastic bubble from birth until he died from cancer at age 12.
His story inspired several films about the disease, including the 1976 film The Boy in the Plastic Bubble starring John Travolta.
Thankfully, today doctors understand much more about SCID and treatments can cure the disorder.
But Frankie’s health took a worrying turn for the worse around Christmas time when he got an infection in his lungs. He had an operation and then spent seven days in intensive care and six weeks on respiratory support.
Last month, he was transferred from the Royal Hospital for Sick Children in Edinburgh to Newcastle, which is one of only two specialist centres in the UK that treat children with no immune system (the other being Great Ormond Street Hospital in London).
He’s now fairly stable in the air-locked room in the Bubble Unit, which as well as treating children with defective immune systems also cares for youngsters with leukaemia and severe forms of arthritis.
Since it was established in 1987, survival rates for the children treated on the unit have risen from 50 per cent to over 90 per cent.
Bone marrow transplants offer the only long-term cure for SCID at present where the faulty immune system is replaced with one from a healthy donor.
Frankie has now started chemotherapy to prepare his body for the transplant. This aims to kill off infections in the body and weaken the immune system to help keep the body from rejecting the donated cells after the procedure.
The family are now awaiting news of when the transplant will take place.
“Frankie may need to spend up to six months in hospital after the procedure,” said Linsay. “We just can’t wait to get him home.”
To support The Bubble Foundation’s work, visit here.
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