Ministers announce support for sick children needing long-term treatment

Little Ivy Hinde is barely six months old but has already beaten deadly sepsis twice and endured five major operations.

She is only now properly getting to know her twin sister Hollie after being in hospital since being born with gastroschisis, a condition which means her bowel and intestines are formed outside her body.

Most babies with this illness need a simple operation to place the delicate organs back into their body but Ivy suffered two bouts of sepsis, a life-threatening reaction to infection, and repeated blockages in her intestine meant she required five major surgeries to correct the problem.

Mum Chloe Milne, 22, from Springburn, Glasgow, said: “The day I discovered I was having twins was the day I learned Ivy had her internal organs growing outside her body.

“I was overjoyed to be having two babies, but terrified at the same time when the doctor explained what was wrong with Ivy.

“It meant I had to be closely monitored for the rest of my pregnancy, and we were warned Ivy would need an operation soon after she was born.”

The condition affects four in every 10,000 births and experts say there is no real main cause. It is understood that the condition develops as early as four weeks into the development of the foetus.

For Chloe, a trainee valuer, and her partner Aaron Hinde, 22, an apprentice joiner, the first few months of their pregnancy were a whirlwind of hospital appointments, scans and tests as they tried not to worry and accept the assurances of doctors that things would be fine.

At 30 weeks, however, specialists were worried when a scan showed the amniotic fluid around Ivy had reduced in size.

Chloe said: “They were suddenly concerned, so I was brought into hospital and watched round the clock.

“The fluid built back up again to the correct level within a couple of days, but the medical team were determined to keep their eye on me.

“They assured Aaron and me that most babies with this condition tend to have their organs placed inside their body soon after they are born, and usually just one operation is needed.

“But being first-time parents, of course we were anxious and worried over the least little thing.”

Chloe had scans every second day, and finally, at 33 weeks, her surgical team decided it was time for the twins to be born so Ivy could have her operation as quickly as possible.

The girls were delivered by C-section on February 12, with Hollie weighing 4lbs 8oz and little Ivy just two minutes behind her at 3lbs 9oz.

© Andrew Cawley

Chloe said: “It was frightening because I knew Ivy would be struggling being lower in weight and being so premature as well as having the condition.

“The team had promised I could hold her once she was born, but she wasn’t doing too well, and they immediately took her away for treatment.

“When I finally did get to see her a couple of hours later, my heart was ready to burst because she was so beautiful.”

During the following weeks, Ivy developed sepsis twice and underwent major surgery five times to place her organs inside her body and repeatedly unblock her intestines.

“Every time she had to have further surgery, our hearts were in our mouths. But we trusted the medical team.

“We knew they were doing their best to help our little girl. Despite having been through so much in her first few weeks of life, Ivy is bright, alert and an absolute joy,” said Chloe.

Ivy has just been allowed to come home for the first time, and her mum and dad cannot believe how far their little girl has come.

The young couple are to be among the first parents in Scotland helped by a new £5 million Young Patients Families Fund to help ease the cost of having a child, from birth to age 18 treated long-term in hospital, which can cost up to £600 a month for transport, meals and associated expenses.

Last week, Public Health Minister Maree Todd said the new scheme would be an improvement on the Neonatal Expenses Fund, allowing families to focus on the health and wellbeing of their child, without the worry of the financial costs.

Chloe said: “It’s cost us at least an extra £100 a week to keep coming backwards and forwards to the hospital.

“That’s a lot of money to us as I’m on maternity leave and Aaron’s on apprentice rates right now.”

At the moment, Chloe and Aaron are able to get Ivy home for up to eight hours a day, and if all goes to plan, they hope she will be home for good by September.

The proud mum said: “I just can’t wait to be able to get Ivy settled at home so she can properly get to know our family, and the twins can get their own wee routine with each other.

“Hollie has been at home all this time, and it’s so sweet to see her touching her twin sister’s face so gently. It’s obvious she loves her and has missed being with her all the time.

“Ivy is very bright and although she has to have a feeding tube and a stoma for a while, she’s doing so well now, we hope there won’t be anything else holding her back.

“She will have a final operation when she’s two years old and the medical team are hopeful that will be it.”

Aaron said: “We just can’t thank the medical teams and everyone who has been such a support through these last months. We know how lucky we are.”