FIRST BIRTHDAY JOY FOR BATTLING JAKE
Parents didn’t know how he could survive
ABABY boy who was born with 85% of his small intestine not developed has celebrated his first birthday against the odds. Jake Spencer, who lives in Llandaff North, Cardiff, was just six hours old when he began vomiting large amounts of bile.
Doctors and nurses whisked him away for emergency surgery to remove what doctors thought was a blockage.
But what they discovered was far worse – the majority of his small intestine had “died” while he was growing in the womb.
It meant little Jake found it impossible to absorb nutrients from his food and would die without medical help.
“Me and my husband had just been messaging our family and friends to announce Jake’s arrival – and a few minutes later he was being taken away from us,” said mum Rachel Spencer.
“It’s not unusual for babies to have a bit of a blockage in their bowel so we didn’t worry that much.
“But when they opened him up they noticed the small intestine hadn’t developed. It was awful.”
Rachel, who works for cancer charity Tenovus, and husband David were told that Jake could be facing up to a year in hospital.
“The worst thing was leaving hospital without him,” said Rachel, who gave birth to Jake, weighing 6lb 9oz, on November 12, 2016.
“We had the car seat and nursery ready for him. For something like that to happen just before Christmas was devastating.”
Jake’s rare condition meant that food needed to be injected directly into his bloodstream.
But, as is often the case with such a small baby, many of his veins would collapse.
He also developed sepsis three times, as the risk of infection from the lines was so high.
“One question we asked very early on was what would happen to Jake if he ran out of veins,” said Rachel.
“The consultant literally just shrugged and didn’t say anything.
“It was very difficult at that point for us to imagine how Jake could possibly survive with the problems he had.
“Having to find a way to tell our family that we didn’t think Jake would be with us for very long was the worst day of our lives.”
In March this year Jake was taken to Birmingham to undergo a major procedure in which the short piece of his small intestine was cut in half to make two lengths.
These were then re-joined, effectively doubling its length.
Then on June 19, after a period of recovery at the Noah’s Ark Children’s Hospital for Wales, Jake had progressed enough to go home.
“When he was first born he was only able to have half a millilitre of milk every four hours but now that’s up to 330ml,” she said.
“Throughout all of this he’s been happy and cheeky and developmentally he’s fine.
“He’s pretty much walking and he loves making animal noises.”
The family celebrated Jake’s first birthday with a party at Insole Court in Llandaff.
She added that the staff at the Noah’s Ark Children’s Hospital were incredible.
“As a family we can’t do enough for the neonatal unit for getting Jake through those first few months of life when things looked so bleak for him.
“The neonatal team came to feel like a family who supported us as parents as much as they cared for Jake.”
Despite spending Christmas Day 2016 in hospital she said the staff made it as special as possible.
“They put a stocking on his incubator and gave us a bag full of goodies, sweets and treats.
“They even gave us a Christmas card from the baby to the parents.”
The Noah’s Ark Charity has now begun its annual Tiny Lives Appeal, which aims to raise vital funds for lifesaving neonatal care.
For more information go to www.noahsarkcharity.org/tinylives
Jake Spencer was born with just 15% of his small intestine working
Jake Spencer with his parents Rachel and David at his first birthday party
Jake Spencer in hospital last Christmas