Happy ending for Holly after heart operation

Holly was born with two holes in her heart and at just six-months-old had to undergo life-saving open heart surgery.

Now, exactly a year on, she is a picture of health, something her parents Sharon and George could hardly dare to hope for.

"She was such a poorly little thing," says Sharon. "Her heart was working so hard she just couldn't put on any weight and it was heart-breaking to see her trying to beathe."

Doctors in Halifax realised Holly had a problem when she was just one-day old during a routine check-up. At first, they thought it was a heart murmur or a probem with one of her valves, but further tests revealed it was, in fact, a hole in the heart.

"We were devastated," says Holly. "It had been a difficult pregnancy, both Holly and her big sister Harriet were conceived through IVF and we had real difficulties with Holly from the word go.

"Holly was from a frozen embryo and although I had a 20-week scan nothing was picked up to suggest there was anything wrong with

her heart.

"When she was born weighing a healthy 7lbs, we were so relieved but then to be told your precious baby has a heart problem was horrendous. She seemed fine but we just didn't know what was going to happen."

At just eight days old, Holly had an ultrasound scan which revealed that there was a large hole in her heart, known as a VSD. Specialists in Leeds told the Heppenstalls that Holly would need an operation to mend her heart by the time she was six months old.

"Our world came crashing down," says Sharon. "It was a terrible six months. Holly's heart was working so hard she just couldn't put on any weight. She was burning off all her calories just by breathing.

"She looked so frail and poorly as she struggled to breathe. I had to stop breast feeding earlier than I woud have liked to and we had to feed her special baby milk which was full of calories.

"As the date of the operation grew nearer, we had to try to make sure that she didn't get poorly. It was really hard as we were going to and fro from the hospital and Holly's big sister Harriett was at school and bringing home all kinds of germs. It was like a living nightmare for those six months."

When the date of the operation came round in November last year, Sharon and George had mixed feelings. "On the one hand, we were relieved that at last the day had come when they would be able to fix Holly's heart, but then on the other hand we had to watch our little girl being put to sleep for an operation which she might not survive."

Holly went into surgery at 8am and her parents wandered the streets of Leeds anxiously wondering how their baby was doing. It wasn't until 1.30pm that afternoon that Holly came out of surgery.

"The surgeon wanted to see us and he said that the operation had gone very well although they had found another smaller hole in one of Holly's heart valves which they had to patch."

Sharon and George went to intensive care to see Holly.

"It was awful. She looked so tiny and still and was on a ventilator and hooked up to all manner of machines with so many tubes in her tiny body.

"We jumped every time one of the machines beeped but the nurses reassured us that everything was okay.

"It was so hard because we couldn't even hold her."

Despite being so tiny and weak, Holly proved she was a brave little battler and less than 24 hours later she was off the ventilator and Sharon was able to cuddle her despite her still having lots of tubes in.

Within five days Sharon and George were told they could take her home.

"We couldn't believe it," she said. "We thought we would be in hospital for two weeks but they said she was doing so well we could take her home.

"But that was frightening in itself. In hospital we had all the support mechanism and once home you are on your own."

Her big sister, Harriet, now five, went with her dad to pick her up. She had been staying with her grandma while George and Sharon stayed in hospital to be close to Holly.

Although Sharon was concerned about having Holly home it became clear quite quickly just how well the operation had worked.

"Before her operation you could put your hand on her chest and feel the vibration, that doesn't happen any more. She no longer struggles for breath and is putting on weight."

Holly is now 18 months old, and, although still small for her age, is doing everything she should for a child of her age. She has just started to walk and constantly surprises her parents.

Her parents do not know what long-term effects such a major operation will have on Holly.

But they are just happy to have their little girl fit and healthy. All that remains of her ordeal is a large scar down the middle of her chest which the family jokingly call her "shark bite" and two smaller scars where the drains were fitted.

To mark the anniversary of her life-saving operation, Sharon decided she wanted to do something for the Children's Heart Surgery Fund in Leeds to repay all the kindness and support they had had with Holly.

Every year, 10,000 children pass through the paediatric heart unit at the LGI and around 330 of them undergo open heart surgery similar to Holly.

Sharon has done a sponsored sky dive and although Harriet wanted

to join her jumping out of the aeroplane she was convinced to hold a biscuit and bun sale at her school instead. So far they have raised more than 2,000.

"I want to give something back, we are so lucky to have units like the one in Leeds on our doorstep. If we'd had to travel further afield it would have made a very difficult time even worse."

The Leeds unit is one of 11 paediatric heart units under review following the scandal in Bristol in the 1990s when babies underwent unnecessary heart surgery.

Some believe having fewer, larger units will lead to centres of excellence which would be better for chidren under-going heart surgery.

However, opponents believe it will lead to longer journey times for patients and their families at times of great stress.

The NHS National Specialised Commissioning Group is now assessing

which centres should stop doing surgery, and which should be expanded to provide the best, most specialised care

There are no plans to cut the overall number of surgeons, but it is likely some would have to move to different centres.

Each would have a minimum of four surgeons. The centres that stopped doing surgery could continue doing non-surgical treatments like diagnostics out-patient care.

NHS medical director Sir Bruce Keogh said the proposals put the interests of children first. "If we don't address this issue we will put some of the most critically-ill children at risk and fail in our duty to ensure these NHS services are fit for the future."

The Patients Association said it was not opposed to reorganisations of specialist services when there were good clinical reasons, but it said if surgical units were closed, patients and their families could face long journeys for treatment.

Sharon says: "The Government is reviewing heart surgical units at the moment and I just hope that the one in Leeds is saved as they do an amazing job there."

Anyone who would like to sponsor Sharon should visit www.justgiving.com/Sharon-Heppenstall

SUPPORTING CHILDREN AND FAMILIES

The Children's Heart Surgery Fund is a registered charity based at the Yorkshire Heart Centre in Leeds General Infirmary.

The centre covers Yorkshire, Humberside and the North Midlands.

The CHSF funds valuable equipment, resources and research for the treatment of children with heart defects and provides a happy and relaxed atmosphere within the hospital for both the children and their families.

Every year 10,000 children pas through the unit and more than 40 per cent will need long term care.

For more information visit www.chsf.org.uk.