Robin House was a lifeline to us.. it gave us memories of our little girl

THE TV is on and two year old Jessica is giggling away at the antics of Peppa Pig.

Her mum Julie brings a cup of coffee into the neat modern living room and dad Scott settles down on the leather couch.

It’s a scene of everyday family life one played out daily in homes across the land.

But beneath the normality Scott and Julie have suffered something every parent dreads the heartache of losing a child.

If things had been different, little Jessica would be watching cartoons with her big sister Jenna, who would have been four.

But it was not to be.

Jenna was born on June 22, 2011.

In the months leading up to that Julie, then 31, had experienced some pain and was diagnosed with gestational diabetes. But other than that she felt fine.

So she and Scott were utterly unprepared for what was to come when she was taken in for a Caesarean section at 38 weeks.

It was the lack of noise that was the first sign all was not well.

“There was no crying,” says Julie, 35. “She was too quiet. I suspected something was wrong.”

Scott, also 35, says: “I didn’t want to worry. But as soon as she was born they cleared her airways and then took her away to the special care unit.”

As the hours ticked by, they were told one worrying thing after another she had one eye smaller than the other, she might not be able to see or hear.

“We knew there was something wrong but we don’t know the extent,” says Scott. “Then we got taken into a wee room told she might have a syndrome.

“We were in shock.”

After 48 hours Julie was moved to Yorkhill, where she’d remain for the next nine weeks.

It was there Scott and Julie found out their little girl had CHARGE syndrome a genetic disorder that can cause several life-threatening conditions.

“You just want a healthy baby,” sighs Julie. “We didn’t know what it meant for her. Was she definitely blind? Was she deaf? What kinds of ops would she need? What would happen in her life?

“You still cling to hope. She looked like a normal baby. She had lots of hair and was quite a sturdy wee thing at 7lb 1oz.”

Because she had no swallow Jenna needed suction and was on oxygen 24 hours a day.

Julie recalls: “She’d stop breathing every day. It was like a switch went off.”

“It was a total nightmare,” says Scott, shaking his head. “I kept thinking I was going to wake up and it would be a bad dream.”

After nine weeks of unimaginable stress in Yorkhill, their consultant suggested the family should visit Robin House for a week’s respite.

It was an idea that didn’t sit easily to begin with.

“I was really reserved about it,” admits Julie. “I was worried about what it would be like when we went in.”

But after a visit they were convinced at least to give it a go.

“We arranged to go there on the Monday,” says Scott. “But Jenna deteriorated quite badly on Saturday. We didn’t think we would get there. We phoned family and told them this was it.”

But remarkably the tot rallied, and that Sunday she made the journey north to Robin House.

“We thought she wouldn’t survive long,” says Scott. “ We thought we’d be there for a couple of nights we were there for 14 weeks.”

Although Jenna’s condition was constantly changing, the trio were able to experience something they never had family life.

“We could do family things with her there,” smiles Julie. “In hospital we couldn’t do anything. At Robin House we went swimming, took her to Balloch Park every day and even took her to the Loch Lomond Shores centre.”

Scott adds: “At first we wouldn’t leave our room, but the amazing staff built our confidence up.

Julie says: “It was so nice to go to bed downstairs and know we were just a couple of seconds away. We couldn’t do that in hospital. We’d go home and feel it was so far away.”

Experiencing activities most folk take for granted wasn’t always easy. But it was worth it.

“It was really stressful at the time,” says Scott. “But the staff were always pushing us to do things together. Looking back, we have all these memories and we have them to thanks for that.”

But inevitably the happy times couldn’t last. As the autumn came to an end, Jenna became increasingly unwell.

“It got to a point she was starting to fade,” remembers Scott.

On the afternoon of November 27, Scott and Julie said goodbye to their beautiful baby girl.

She was just five months old.

“It was a Sunday afternoon and just the two of us were in the room with her,” recalls Julie quietly. “There was no panic, she wasn’t in distress. We didn’t have to press any buzzers. We just knew. We were together.”

As Jessica clambers onto the couch next to her dad, Scott says: “We were just sitting cuddling her. Just the three of us together.”

Scott carried her through to the Rainbow Room, where children are placed after they die.

“She was there for a few days and it was nice to know she was there and we could go in and out any time,” says Julie.

With support from the staff, Jenna’s funeral was planned. Nurses from the hospice were there at the crematorium with the family to say goodbye.

Jenna may be gone, but she lives on in the memories created by Robin House.

Julie says: “Going back now it’s comforting. We feel a connection to Jenna there.

“Time passes and life goes on for everybody people who you work with or family. She’s always there but there’s not so much chat about her. But when we go to Robin House we talk about her. The memories are there.”

Scotts adds: “We associate Robin House with Jenna. It is her.”

Jessica was born on June 17, 2013. Of course, Scott and Julie were afraid history might repeat itself Scott reveals it was eight weeks after the birth before he could accept everything was OK.

The couple take Jessica to Robin House every time they go, and she loves it. Through her ongoing connection with the hospice there’s no doubt she’ll grow up feeling close to the sister she never knew.

Before I leave the family to Peppa Pig Julie wants to tell me just how important Robin House is and why the Oor Hoose appeal is so worthwhile.

“Robin House was a lifeline,” she says. “It gave us memories.”

She seems stuck for words for a second. Then she smiles.

“There are no words to describe it it is just a special place.”Oor Hoose introducing our campaign to raise a million pounds for Robin House – click here How to donate

Robin House is 10 years old and what better present than another amazing show of kindness?

CHAS is about to embark on a major programme of renovations, refurbishment and building to bring the hospice bang up to date and offer even better facilities to the children, teenagers and families who use it.

We want to raise £1 million and that’s where you come in.

We’ve tried to make it as easy as possible for you to give, so there are several ways to donate. And please use Gift Aid if you can.

TEXT Text CHAS10, leave a space then enter the amount you want to give (eg CHAS10 £10) to 70070. It is important you include a £ sign

ONLINE Go to the Oor Hoose JustGiving page at

campaign.justgiving.com/charity/chas/oorhoose

or give via www.chas.org.uk

CHEQUE Send cheques payable to Children’s Hospice Association Scotland (CHAS) to: Oor Hoose, CHAS 10, 2nd Floor, Buchanan Tower, Cumbernauld Road, Stepps, G33 6HZ.10 great ways to get involved in the Oor Hoose campaign – click here