Par­ents didn’t know how he could sur­vive

Wales On Sunday - - NEWS - MARK SMITH Health Cor­re­spon­dent [email protected]­

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.noah­sarkchar­

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

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