The family of an autistic teenager with a heart condition have praised hospital staff in Lincoln for going above and beyond to make sure he was able to have a vital scan.
Jake Baillie, 19, has a heart condition which means he will need to have a scan every few years.
He was born with a bicuspid aortic valve, which means his valve only has two cusps (flaps) instead of three. This means he is at increased risk of the valve leaking or narrowing and may eventually need a valve replacement.
Jake is also severely autistic and has severe learning needs, as well as other medical conditions. His heart condition was discovered by chance when he started having seizures three years ago.
He underwent some neurological and other investigations and was diagnosed with epilepsy, as well as his heart condition.
Jake’s autism means that he has to follow a strict routine, otherwise he becomes extremely distressed. His family and carers spend weeks and months preparing him for even the slightest change to his routine.
Jake’s dad, Clive, said: “The last time Jake needed a scan, we managed to get him to the hospital and he tolerated about a minute with all of the sights and sounds and then he became so distressed that he needed to be sedated.
“He is such a strong young man. He is 6ft tall, weighs 16 stone and is so strong, especially when he becomes unsettled.
“It was so distressing for Jake and everyone involved, but we needed for him to have an MRI scan and an echocardiogram to understand what was going on.”
The results were crucial in diagnosing Jake’s conditions and getting him on the correct medication, but his heart condition will need regular monitoring.
As Jake is now an adult, his family were told that he would need to travel out of the county to be able to have the scan under general anaesthetic.
Clive added: “I spoke to the team at Lincoln to see if there was any other option at all as I just could not see how we could prepare Jake for the journey and the new surroundings. Their response was simply amazing and blew me away.”
The team at the hospital agreed to try to perform the echocardiogram outside of the hospital in Jake’s home.
Realising he would need to get used to the sensation of the scan, the family asked if there might be an old probe they could borrow.
Following conversations with the family, Chief Cardiac Physiologist Liz Scrivener reached out to Clinical Engineer Jack Simons to see if he could help. A replicate probe was made using the Trust’s 3D printer.
Jack said: “It is great to be able to use our equipment to help others. In our clinical engineering team we don’t get to meet patients and have direct involvement in their care, so it was a real privilege to be able to help on this occasion.
“It was humbling, but also so rewarding to know that we could make a real difference.”
Clive and Jake’s carers got him used to the probe being against his chest and once he could manage 10 minutes they contacted Liz, who started to visit him at school and home until she became a familiar face, before being able to do the scan.
The great news is that Jake’s heart condition had not deteriorated.
Clive said: “We have had the great news that Jake will not need another scan for two years, but even better is the fact that we now know how to prepare him for it.
“I have been amazed by the response from the hospital. I asked for support and everyone stepped forward. Nothing was too much trouble and everyone has gone out of the way to ensure Jack has got the scan that he needed.
“Liz and Jack have been amazing and we are so, so grateful.”