'˜It can save a life' - why little Chanel's family want you to talk about organ donation
The mum of a girl who will need a heart transplant to keep her alive has urged other parents to think about how they could help save a life.
Chanel Murrish was born with only half a working heart and made history when she became the youngest baby to ever undergo open heart surgery when she was just moments old.
In October, she underwent her latest round of surgery to help the blood pump around her body and it is hoped that will see her through until she is an adult.
However, doctors are sure that in time she will need a new heart before she has grown up.
The nursery school pupil, from Seaham, who is just weeks away from her fourth birthday, will go on the transplant list as soon as she is deemed to be suffering from heart failure, with few options open to her medical team to treat her.
As the Government carries out a consultation on an opt out system for organ donation, rather than an opt in programme, Chanel’s family has spoken about how they hope people will have a conversation about signing up to the register.
They hope parents will also talk through whether they would offer their child’s organs to save other lives, should the worst happen to their youngster.
Mum Fay, 28, is married to HGV driver Micheal, 31, and they are also parents of Chase, seven, and Cole, five.
She said: “We don’t know when Chanel will need a transplant and we really hope she will be a grown up before we get to that stage.
“But because of her condition, she’s at risk of going into heart failure and will need a transplant.
“They’ll need to find a heart for her really quickly.”
Chanel’s condition - hypoplastic heart syndrome - was pinpointed by doctors while she was still in the womb.
She has undergone a series of operations and has also suffered a stroke and has cerebral palsy, but doesn’t let her health troubles stop her enjoying life, with a love of Disney princesses and a host of awards to her name in recognition of her fight.
Fay added: “I hope they do bring in an opt out system and I know it’s something that has been talked about for a long time.
“I understand if people choose to opt out and I know it’s something that can be upsetting for them and their relations, but it would mean there were more organs available to people that are waiting. I’ve seen so many who are in need and a little girl Chanel was friends with and was close to, she was waiting for a heart and they lost her.
“I think people should be more aware and should talk about it more.
“I know it is a delicate subject, but children waiting for a transplant cannot have an adult organ, they have to have a children’s organ.
“I know it’s very difficult to talk about, but it’s something people should discuss, just in case.
“If something happened to one of my children, I couldn’t imagine the devastation and hurt, but I know from seeing others who are ill, and from Chanel’s condition, that it can save a life.
“I hope in the next few years, this might be made more simpler and the message will be out there.”
More information about the Government’s consultation and how to sign up for the NHS register can be found via http://bit.ly/2kXZrat
How Chanel turned Santa’s little helper
Chanel also took a turn as Santa’s little helper this year as she handed out gifts to children just like her.
The three-year-old and her family have made it a tradition to visit the heart ward at the Freeman Hospital, in Newcastle, and hand out presents to those spending their Christmas in its care.
The act has been carried out at similar units around the country after mum Fay set up the Heart Family Group, which has brought together families with children who have heart defects across the country, uniting them through their shared experiences and giving them the chance to form friendships, take breaks together and pulling together fundraising efforts. Fay said: “We’ve delivered presents on Christmas Eve every year since Chanel was born and set up the support group coming up to four years ago when Chanel first ever got home from hospital because I felt a lack of support around at the time.
“It’s formed from eight cardiac units and so far we’ve got five of the eight where presents are handed out.
“Now we’ve got 3,000 people in it, but 12,000 people following our Facebook page and we’ve got a big membership from the different units set up.
“We give out the presents because we just think it’s hard enough to be in hospital to start off with and I think it must be so much harder at Christmas and especially because a lot of these families also have other children.
“Some are critically poorly and some are far away from home and from their relations, I can just imagine how difficult it is for them.”
Chanel’s story can be followed through her page, https://www.facebook.com/ChanelMurrishHLHS/.