Miracle baby's mum launches Congenital Diaphragmatic Hernia campaign

Bury Times: Neve with mum Katie Neve with mum Katie

A MUM whose daughter was given just a 50 per cent chance of survival is calling for increased awareness of the condition which threatened her baby’s life.

Katie Anderton, aged 29, and husband Carl, aged 30, were told their baby Neve, now six months old, might not survive outside the womb.

The couple, of Inglewood Close, Bury, were told Neve had Congenital Diaphragmatic Hernia (CDH) at Katie’s 17-week scan and were offered a termination.

They turned that down and when Neve was born in May she had only a tiny strip of diaphragm meaning her stomach, bowel, liver, intestine and spleen had moved up into her chest cavity.

Born prematurely at 36 weeks, her tiny lungs were so under-developed that crying could have damaged them and she was taken straight to neonatal intensive care.

At five days old, she underwent a six-hour operation to build a new diaphragm, with surgeons stitching a gortex patch to her ribs to prevent her organs re-entering her chest.

Neve spent the first few weeks of her life at St Mary’s Hospital, Manchester, on ventilation machines before she was transferred to the Royal Bolton Hospital at three weeks old.

Her left lung was only 10 per cvent developed, leaving her prone to chest infections and at nine weeks old she was admitted to Manchester Children’s Hospital with pneumonia.

Carl and Katie are now determined to raise as much as possible for the charity CDH UK, which they credit with giving them the strength to het through the traumatic experience.

Katie said: “CDH affects one child in every 2,500 meaning it is as common as Spina Bifida. But there just doesn’t seem to be enough awareness of the condition.

“To find out your baby might not survive is heartbreaking but for us terminating the pregnancy was not an option.

“But I couldn’t bring myself to buy any baby stuff whatsoever and could not enjoy the pregnancy at all in case she didn’t make it”

Neve is doing well but her CDH has left its mark. Her sleeping patterns are still akin to those of a newborn; she has an extremely sensitive gag reflex so frequently vomits and she can only drink one or two ounces of milk at a time.

A current storyline in the BBC TV hopsital drama Holby City is focussing on a baby with CDH and Katie is hoping it will result in increased awareness of the condition.

Katie said: “CDH UK’s Facebook page is fantastic as sharing stories with other parents gives you hope and helps you to prepare yourself for what is to come. They also send you information packs, can help with expenses such as petrol or transport costs and fund research into new ways of treating the condition.

“Without CDH UK’s support, I don’t know how we would have survived this whole thing. I would have been an absolute mess.”

Katie has recently begun treatment for breast cancer after her pregnancy accelerated the growth of a tumour and juggles this with caring for Neve and elder daughters Olivia, aged six, and Anya, aged two.

He said: “When Neve was born and we caught a glimpse of her hooked up to all the tubes and wires it was a massive shock.

“Every day when we look at her we know we made the right decision and we have been moved by everyone’s support t has really opened our eyes to the people around us.”

Katie and Carl are hosting a fundraiser for CDH UK at The Duck Club in Coppice Street on Christmas Eve, starting in the afternoon and running into the evening, which will include a Santa’s grotto and karaoke.

For more information or to make a donation, email Katie at raisingforcdh@yahoo.com or go to www.mycharitypage.com/NeveWillowCDH/


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