For mum and dad Ian and Debs, their son Riley really is their ‘little miracle’
After suffering issues making it difficult to conceive, the couple fell pregnant in October 2013. Early into her pregnancy Debs collapsed at home and was rushed to hospital with internal bleeding, they discovered she was carrying twins.
"Debs had been suffering with a bad urine infection when she collapsed, she had lost so much blood she couldn’t even lift her head off the pillow. She was rushed into hospital and straight into theatre and I was told she had 15 minutes to live without intervention," said Ian.
Debs then underwent an emergency operation where it was discovered she had suffered an ectopic pregnancy and had miscarried. After thinking their dreams of a brother and sister for daughter Charlie had been shattered, Debs was taken for another scan days later – which left the couple dumbfounded.
“The consultant came in and said he didn’t know quite how to tell us, but Debs was still pregnant. It was mind-blowing to find out that Debs had been pregnant with twins and that one – our Riley - had survived.”
At a 12 week scan, medics saw what they described as a ‘brightness’ on Riley’s bowel. Further blood tests revealed that Debs had contracted cytomegalovirus (CMV). The virus, similar to flu, this can affect unborn babies in very early pregnancy while the organs are developing.
Because I had contracted it very early in the pregnancy, we were told that it would likely affect Riley, but we had already come so far, we were not going to give up on him. He had already fought so hard to be here.
"We decided that whatever was coming, we would deal with it," said Debs.
The family, who continued to have regular scans, returned home for the rest of the pregnancy. After a traumatic labour, with doctors struggling to find Riley’s heartbeat and fitting Debs with a canular into her main artery, Riley was induced and born in July 2014 weighing 6lbs 10oz.
Riley then underwent a myriad of tests, which revealed he could only hear in one ear. After being given a trial drug to reduce his CMV viral load, Riley also lost the hearing in his other ear.
At 6 months old Riley, who is confined to a wheelchair, suffered his first epileptic fit. After years of different drugs and diets to help limit the seizures, caused by CMV damaging the pathways in his brain, he was fitted with a Vagus Nerve Stimulator to control them.
Caring for Riley at home with the help of his grandma, Debs, who used to work as a hospital A&E receptionist, sleeps next to her son each night. Debs, who had a kidney removed in 2011 after years of repeated urinary infections and is now facing a major bladder operation, said: "Riley has such a lot of medication, he doesn’t sleep through the night."
"He wriggles around a lot and needs repositioning and if he gets a cold, he needs suction through the night to help him breathe."
The family were referred to Charlton Farm Children’s Hospice in 2021.
Ian, a builder, said: "We try our best to include Riley in everything we do, but we have to be realistic that there are things that as a family we can’t do."
We know that when Riley is at Charlton Farm he is safe and cared for. It takes the pressure off us completely
"The care team know his exact care needs and are so dedicated to him." The family’s resilience stays at Charlton Farm gives them the chance to recharge their batteries. Riley’s sister Charlie also looks forward to the stays at Charlton Farm.
"The sibling team is amazing with Charlie and she loves it at the hospice. They go above and beyond for her. They also have that special ability to talk to her about issues when we struggle sometimes to find the right words. Our stays also give us just time to be Debbie and Ian."
Charlton Farm is like an extended family to us.
The family have also raised thousands of pounds for CHSW over the years. Debs and Ian say although life is tough, Riley continues to amaze them with his love of life
"He is so content and happy," said Debs "And as soon as we walk through the doors of Charlton Farm he knows it – because his face lights up with the biggest of smiles."