Little Jacob has Down syndrome, but not long after he was born he stopped breathing and had a series of apnoea attacks. He spent months in hospital, and now needs a lot of care. We look after Jacob once a fortnight at home, and we provide respite care so his family can have a break.
Jacob was born in October 2012, with Down syndrome. But there were no complications, so his family took him home and looked forward to starting the next chapter of their lives.
But a few weeks later, out of the blue, Jacob stopped breathing. He’d had an apnoea attack. “Instinct took over: I frantically did CPR on him while Vanessa called for an ambulance,” remembers Stephen, Jacob’s dad.
After 2 days at Pinderfields Hospital, Jacob went home with no clear understanding of why he'd had the attack. But 2 weeks later it happened again, and he was still at Sheffield Children’s Hospital after Christmas, having had another big apnoea attack.
"It felt like an eternity as the doctors were trying to resuscitate him, and then finally he took a sharp breath. It was such a close call, but we could see that Jacob was a fighter.”
It was eventually found that Jacob had a ‘vascular ring’, a malformation of blood vessels in his major artery, which put pressure on his windpipe and made it difficult for him to breathe. As a result, he had surgery at Leeds Children’s Heart Unit, and was able to go home on 14 January. Once again, the family thought they could settle down.
"But a week later, Jacob had yet another
apnoea attack at home – we couldn’t believe it,” says Stephen. "We ended up back at Leeds Children’s Heart Unit, where the doctors said they had no choice but to insert a tracheostomy tube to help Jacob breathe.
“We now know that Jacob’s windpipe was flat at the top and at the bottom, and slightly distorted in the middle, too. When he was born, and for the first weeks of his life, we noticed he threw his head back a lot. We thought nothing of it, passing it off as a common habit for babies, but we were later told he may have been doing it to get air into his lungs."
Support from our children’s hospice
In July 2014, Jacob’s family found out about Forget Me Not Children’s Hospice. “We met 2 nurses who explained what was on offer. It’s hard being a full-time carer, and the news just felt like a huge relief.
“Every other Friday, a team from the hospice comes to our house to look after Jacob. It gives us some time to ourselves, so we can regroup. It’s impossible to predict when Joseph may need an emergency tube change, so we can rely on the professionals from the hospice in a way we can’t with other people.”
“Forget Me Not also offers us 8 nights of care a year, when Jacob goes to Russell House – which lets us have a break, get jobs done, or get a really good night’s sleep. We’ve stayed over at Russell House ourselves, too, in one of their amazing parent suites: they can’t do enough for us, from newspapers to a full English breakfast. It’s just a magical place. We also use their complementary therapies and the counselling service, which is greatly appreciated.
“We take each day at a time. Jacob has good days and bad, but he’s a very strong-willed little boy, and we have the reassurance of support from Forget Me Not Children’s Hospice.”