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We need a scanner to help children like Josh |
Longest half-hour a
long way from home
 He was born nine weeks ago on Friday, January 26, and went home with Nicola and David, both 27, to their home in Rutherglen in Glasgow the very next day.
“There was no reason to think there was anything wrong,” says Nicola. “But when he was five days old, our midwife noticed he was a bit blue in the face.
“At first she thought maybe he was just cold but when we went back into hospital he was diagnosed with hypoplastic left heart syndrome. We couldn’t believe it.”
Even worse was to follow. The doctors caring for Josh couldn’t open the valve on his heart and Nicola and David were told his life-support machine might have to be turned off.
Chance
Half an hour later — “The longest half-hour in the longest day of my life,” says Nicola — the doctor returned. They’d managed to open the valve and Josh had a fighting chance.
Hypoplastic left heart syndrome is a rare congenital abnormality which affects one in 5000 children — around 200 babies are diagnosed with it each year in the UK.
The condition is a collection of malformations on the left side of the heart, which means it’s unable to function properly.
As a result, the burden for maintaining circulation falls on to the right side of the heart and it simply can’t cope — the extra workload causes the heart to fail, usually within a week of birth.
The complex surgery needed to correct this means it requires a dedicated, experienced team approach and is only offered in a limited number of paediatric cardiac centres. In Josh’s case that meant a flight by air ambulance to Birmingham with mum and dad following behind.
The travelling is far from ideal for a baby in such a condition and
it also meant added stress for Nicola and David — not least when heavy snow left them stuck for six hours in Manchester before continuing with a police escort on to Birmingham.
Harder
“Being away from home made it so much harder,” says David. “The travelling and being away from family just added to the pressure. It would have been so much easier if
it could have been done in Glasgow. And obviously moving Josh in his condition wasn’t exactly ideal.”
In all, the family were in Birmingham for 12 days.
Thankfully, the treatment went well and Josh took it all in his stride. Seeing him in the Royal Hospital for Sick Children at Yorkhill last week, posing for the camera with the bored air of a seasoned model, you’d never guess that just weeks ago he was under sentence of death.
He’s a happy and content little boy, calmly ignoring any fuss going on around him.
Josh, Nicola and David went home on Friday and excepting check-ups at the Sick Kids and any unforeseen problems, he will stay there until returning to Birmingham when he is six months old to have an operation to repair a hole in his heart. Ironically it was that hole which initially kept him alive as it allowed blood to pump from one side of the heart to the other.
While Josh’s mum and dad are delighted with the treatment he received in Birmingham, they’d have been so much happier if it could have been done nearer home. The good news is that Yorkhill will soon begin carrying out the very procedures that saved Josh’s life.
However, to do so as effectively as possible, the department of neonatal medicine desperately needs a new, state-of-the-art scanner that allows the tiniest of babies to be investigated and treated at their cot-side.
Life-threatening
Consultant neonatalogist Dr Anne Marie Heuchan explains, “We look after very sick newborns with a range of problems from extreme prematurity to term babies like Josh with complex congenital heart abnormalities and other complex or life-threatening abnormalities.
“We aim to optimise diagnosis and treatment for these babies.
We work very closely with all of the specialist paediatricians, cardiologists, radiologists and surgeons in Yorkhill Hospital.
“To give the babies the best possible care and decide on the
best treatments, we need detailed scans of hearts, brains, kidneys and other organs. This is also vital to the care of all of our premature babies.
“Currently, we rely on borrowing scanning machines from the cardiology and radiology units. The scanner we use now is seven years old and just isn’t good enough for what we need.
“A high-technology scanner will be integral to developing our service and providing cutting-edge care to Scottish babies in the next decade.
“Rapid changes in ultrasound technology mean it’s now possible to have bedside ultrasound scanners that will not only provide the best-ever quality ultrasound pictures, but will deliver 3D and 4D images, as well as bedside CAT scan quality pictures that were never possible before.
“In the future we hope cardiac surgeons would be able to view 3D models of abnormal hearts of sick babies taken at the bedside in our intensive care unit before the baby is taken to surgery.
Vulnerable
“Similarly, abnormalities in babies’ brains can be viewed as 3D models and special pictures, similar to CAT scans, can be taken by the bedside with the same equipment.
“The babies who benefit from this equipment are very vulnerable and come from all over Scotland, as well as occasionally from outside Scotland.
“In the near future, our department will also be sharing ward facilities with our surgical colleagues in Yorkhill, so that another large group of sick babies will also benefit from this technology.”
Naturally, a top-of-the range scanner doesn’t come cheap at between £100,000-£150,000 and is out of the reach of the NHS budget. That’s where we come in.
To give babies like Josh the best possible care on their own doorstep we’re asking you to dig deep and help buy the scanner that’s so desperately needed. Nicola and David are already planning a fundraising night at their local pub.
The scanner is a worthy addition to our wish list and will put Yorkhill at the forefront of medical technology and save the lives of babies from all over Scotland and beyond.
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You can e-mail us at:
hospitals@sundaypost.com |
Nicola and David with baby Josh.
