A BRAVE baby girl with a rare disease faces life-changing surgery at only four months old.

Little Aoife McGachy was born without crucial nerves which control bowel movements.

The tot was diagnosed with Hirschsprungs disease, which can cause severe constipation and can lead to a serious infection called enterocolitis.

Her mum Debbie, 36, said: “She was rushed to the neo-natal unit as an emergency.

“They did a test and biopsy and we had to wait a week for the test results. We had been told it could be Hirschsprungs and then we got the news.

“I just cried. I was absolutely devastated.”

Aoife is an extra special baby as Debbie and husband Kevin had been trying for a family for many years without success and underwent treatment to help them conceive.

They were overjoyed when Debbie discovered she was expecting after losing a baby eight weeks into a previous pregnancy.

Everything went well and Aoife weighed in at a healthy 7.10lbs at the Queen Elizabeth Hospital and the family had no idea anything was wrong.

Debbie said: “It was such a shock. We were told it was rare for a wee girl to have this. 

“Only one in 5,000 children have it.

“Aoife was our first baby.

“We went through ICSI, which is similar to IVF, and we waited all that time to have her, then this happened.”

Little Aoife stayed in hospital for two weeks before she was allowed home.

Her doting parents travelled up every day to visit her in hospital and called for an update first thing every morning.

She said: “The staff were available 24/7 — they sent us pictures and videos.

“I can’t thank them enough.”

The couple were thrilled to finally bring their precious bundle home but it’s been a steep learning curve since for Debbie and Kevin, who live in Inverkip Road.

They were shown at the hospital how to do a washout procedure where a thin tube is inserted and filled with a warm saltwater solution, to help flush out the bowel.

This has to be done on a daily basis, with community children’s nurses from the Skylark Centre also visiting their home.

Debbie said: “We have a changing board and mats and it can be very stressful but my mum and my family have been a great help, sometimes staying overnight.

“You really need two people especially now when she is getting bigger.”

But Debbie says her daughter is a star and has coped really well.

She said: “She’s very good natured, she eats and sleeps and is doing everything she is meant to do at this age.

“You wouldn’t think there was anything wrong with her.”

But Debbie says the routine of visits and procedures means she feels that the days fly in.

The new mum said: “She’s four months old and I feel I’ve not been able to spend time with her going to Bookbug sessions or toddler groups due to regular hospital appointments.”

It is hoped this will change when Aoife returns to hospital today for a six-hour ‘pull-through’ operation where the affected section of her bowel will be removed and the healthy sections will be joined to the anus, so that poo can be passed.

But there will always be the risk that Aoife could become unwell and be prone to enterocolitis.

Debbie hopes her daughter will make a full recovery and with some support will be like any other little girl.

If surgery isn’t successful, she will have surgery to create a stoma, an opening on the front of her tummy with waste diverted into a pouch. 

Debbie explained: “It just depends how much of the bowel has to be removed.”

She added: “I have found support on Facebook from other parents in London and from people in Glasgow whose wee boy is three now and doing really well, and he had the same surgeons. So we’re in good hands.”

Debbie, who wants to thank both hospital staff and nurses from the Skylark unit, is hoping to hold a charity night soon to raise funds for the Queen Elizabeth Hospital.