CHD Awareness week: Hope's story

The four-year-old was born with a rare condition, Hypoplastic Left Heart Syndrome, which meant she was born with

half a heart.

Everything was against her but her parents, James and Dolores, had hope and knew they had to do whatever was needed to give their baby whatever chance possible to live.

Brave Hope, who will be five in April, has defied the odds and has endured more than most of people will in a lifetime.

“We count our blessings every single day, cherish every moment, take one day at a time and enjoy every minute. We believe in miracles. Hope is our wee miracle,” says Dolores.

James and Dolores, were given two choices after being told of their daughter’s condition at the 20 weeks scan - Comfort care, which meant they could take their baby home and make him/her as comfortable as possible until nature took its course and he/she passed away.

“With this kind of condition our baby may have only lived a few days or even hours,” said Dolores, or have three open heart surgeries. The choice was easy.

The couple have shared Hope’s remarkable journey as part of Congenital Heart Defects (CHD) Awareness Week and made a powerful video chronicling Hope’s journey.

“We were asked recently by another heart mum to share Hope’s story, so we decided to do a video of what it’s like to have CHD as it is never much talked about,”

said Dolores. “We are hoping the video will make people more aware of the condition and show them what these children have to go through. It is the number one birth defect, funding is needed to help understand what causes it, how to prevent it, detect and diagnose it as soon as possible, come up with treatments so children undergo less invasive surgeries and to improve the long term prognosis for all those born with CHD. We are also hoping the video will give hope to other families facing surgeries and show how sometimes it does work out alright.”

Since the video went online the couple have been inundated with support.

“We are totally overwhelmed by the support we have received, and we would like to thank our family, friends and everyone who sent messages, visited us and prayed so hard,” said the couple.

Hope has come a long way, but the P1 pupil at St Canice PS in Dungiven is “loving life and living it to the full”.

“She is just such a joy to be around. Our whole family has been affected and it has been a long and very, very tough journey but worth every minute,” said Dolores.

Recalling when Hope was born, Dolores says “she looked perfect”.

“We only got to hold her for a second before she was taken from us and transfered to PICU,” recalled

Dolores.

“As Hope required a very specialised surgery, which is only carried out in a small number of children’s heart units in the UK, it was necessary to ensure Hope received the highest quality treatment for us to travel to Birmingham Children’s Hospital as they had the expertise to carry out these operations.”

The next day Hope was flown by air ambulance to Birmingham, with mum and dad following in a commercial flight.

“We didn’t know if our baby girl was going be alive by the time we got there and we felt our hearts were being ripped out as we were leaving our other two children Leah and Adam behind, although we knew they would be well looked after by our family and we knew Hope needed us more.”

At three days old Hope had her first open heart surgery. She also had other struggles and required further surgery at just four weeks old and at six weeks old. Home for Hope, for some time, was hospital - three months in Birmingham and six weeks at The Royal Belfast

Hospital for

Sick Children.

“We finally got to take our amazing wee girl home for the first time and become a whole family again,” said Dolores.

However, it wasn’t long before Hope had her second open heart surgery, aged seven months old.

“This was not straightforward as her chest wound had become infected and this required a month’s stay in Birmingham Children’s Hospital,” explained Dolores.

Hope had her third open heart in November 2015, followed by another month-long stay. The couple say Hope is aware of her condition. They say it’s hard for her at times as she can’t do, or keep up with her peers “but she loves showing off her beautiful scar. It is her pride and joy”.

Although Hope has received surgery for her CHD she can never be cured, and she will have to learn to live with lifestyle restrictions. Hope will take medicines each day, and she will require regular trips to the hospital for check-ups and scans.

“There are no more surgeries on the horizon for Hope,” says Dolores. “Her future is uncertain, but we are very positive that they will come up with something else by the time she needs it.”

The couple are in awe of the people involved in Hope’s care, and have built good relationships with the medical staff who have looked after her.

“Had it not been for the nurses, doctors, surgeons, there would not be a Hope today,” said Dolores. “We cannot say enough or thank them enough. We are, and will be forever grateful. Hope is an inspiration to everyone. She continues to amaze us all, she is so brave.”