Out of grief comes hope as family support scanner plea

Out of grief comes hope as family support scanner plea

20 June 2012 - by BY JOANNE FLEMING

THE Cullen family is finding strength amidst unimaginable pain.

They are mourning 18-month old Olivia who passed away just three weeks ago after a lengthy period in hospital.

Olivia, the delight of Downpatrick couple Emma and Philip and little sister to Eoin, had fought a number of illnesses in her short life — and despite their pain her family are determined to keep fundraising for a charity they hope will ease the suffering of others.

On Friday there were many smiles amid the grief as family, friends and supporters handed over a cheque for almost £4,000 to the Children’s Heartbeat Trust following a fundraising evening in Downpatrick RGU, organised by Philip’s twin brother Roger. The charity is one of several fundraising for the Children’s MRI Scanner Appeal.

Olivia had lengthy waits for the use of an adult scanner at the Royal Victoria Hospital for Sick Children when she was rushed into hospital last December — the only hospital of its kind in the UK or Ireland without its own MRI scanner. And while quicker scans would sadly not have saved Olivia, it would have lessened the family’s trauma.

Olivia had a rare chromosomal condition (HMG-CoA synthase deficiency), which meant her body did not respond as it should when she contracted the norovirus last Christmas, instead going into a metabolic crisis.

Mum Emma explained how they awoke on Christmas morning to find Olivia having some kind of seizure and immediately called an ambulance.

“They worked on her for two-and-a-half hours,” she said. “She was having seizures and her blood sugar was very low.

“The neurologist thought it was important for her to get an MRI scan as soon as possible. After 36 hours she was stable enough for an MRI but unfortunately we waited nine days, which contributed to the stress.”

Seriously ill children attending the Royal have to wait to use the adult scanner and some have to travel to England to do so, such is the demand. The delay also results in more invasive tests being carried out.

Emma explained that the process of taking a sick child to the adult MRI scanner was a major operation within the hospital complex.

“It takes six people,” she said, explaining that intensive care, ambulance paediatric, theatre nurse and technical personnel had to be present.

“Olivia was three hours away from us when she got her scan,” Emma continued. “When you are there 24 hours a day three hours is a worrying time.

“She spent 22 weeks in hospital and two MRIs were cancelled; it is either because a member of staff is unavailable, or you can be ready to go and somebody else needs it.

“My mum and I are both nurses so we do have an understanding. When it is your own child, however, it breaks your heart.”

Unfortunately Olivia’s second scan indicated brain damage was more extensive than originally thought, and during her time in hospital she had to go through an operation to help a severe reflux condition, have a feeding tube ed and have antibiotics administered intravenously.

“That last weekend with the intravenous antibiotics we could see she was really getting no better,” said Emma. “The phone rang and they said were going to tube her. She was terrible looking. The anaesthetist came out and said he wanted to talk to us. But I knew by the look of her.”

Despite having to face up to the tragedy that awaited them, Emma describes the last hours as memorable for the right reasons.

“We got to say goodbye,” she said. “It was very peaceful, all the family were called, and they kept the ventilator going until everybody had seen her.”

Both Emma and Philip carry the rare recessive gene which led to Olivia’s HMG-CoA synthase deficiency and are aware of the “one in a million” chance that they met and married.

Reflecting on the daughter whose memory is very much celebrated in their Downpatrick home, Emma said she was aware from early on that Olivia was “really special”.

“She really gave it her all,” said Emma of her time in hospital. “A grown woman or man could not do more considering what her wee body went through.

“The four months of the summer when she was not in hospital, these were the best of her life. She was the best craic and she had just started to walk. She would stand at the window and look out, and she had her ‘hi dad’ wave. Olivia was a real character who made a mark on everyone’s life.

“I want to give something back to the children and the staff in the Royal.

“If, in her short life, she can help other children it does give us some kind of comfort and support.

“Her life was not in vain. From the day and hour she was born there was something about this baby that was really special.”

The Children’s MRI Scanner Appeal has raised £1m so far in its £2m appeal and the Cullen family plan to be there every step of the way. An ASDA bag pack is being planned and a charity golf day has been organised for Downpatrick Golf Club on August 31. The family hope to get people to sponsor the holes and host a golf and family fun day.

To make a donation to their appeal contact Daniel Teggart 07783553636, Ryan Teggart 07849633681, or Philip on 07846170305.

Sarah Quinlan of the Children’s Heartbeat Trust thanked all those who had helped raised money so far, and everyone who had donated or provided sponsorship.

“We would like to thank all the families for their support,” she said. “And, of course, we would like to say thank you to Olivia.”

Further details of the campaign can be found at

http://www.mriscannerappeal.org/