Doing it for the kids
Grandparents Jeanette and Richard Rosser talk to Sarah Brealey about the challenges of raising two children who both have an inherited heart condition.
Love, loss and sacrifice are words that Jeanette and Richard Rosser understand better than most.
Their lives changed forever on 14 June 1998, the day that their future daughter-in-law Jayne had a cardiac arrest. She survived, but was left with brain damage and spent the remaining two years of her life in a nursing home.
While their son Darren kept vigil at his fiancée’s bedside, Jeanette and Richard stepped in to help look after their granddaughter Becky, just six weeks old, and grandson Callum, 14 months.
We found it difficult dealing with it on our own, bringing up the grandchildren when our family had been destroyed
Tragically, two years after Jayne’s death, Darren also died and Jeanette and Richard became permanent guardians of the two orphaned children. “Our whole family fell apart,” says Richard, 58, from Hengoed, near Caerphilly. “We found it difficult dealing with it on our own, bringing up the grandchildren when our family had been destroyed. But I wouldn’t have walked away from them.”
Inherited heart condition
Within weeks of Jayne’s death, Becky and Callum tested positive for Long QT syndrome (LQTS), the inherited heart condition that led to their mother’s death. LQTS causes an electrical disturbance to the heart and puts those affected at risk of having a dangerous heart rhythm. Some people experience no symptoms at all but others may faint or collapse. In some cases, LQTS can cause sudden death.
At the age of four, Becky had a cardiac arrest and had to be resuscitated by Jeanette, now 64, who had learnt emergency life support skills at work.
“Becky came home from school one day and said she didn’t feel well,” says Jeanette. “I rang the hospital and they said to bring her in. In the car on the way, she stopped breathing. It was like what had happened to her mum was happening again. I was terrified, but there was no one else to help. It was lucky I had learnt CPR. She was unconscious in hospital for eight hours and we didn’t know whether she’d be OK.”
Becky had a second cardiac arrest when she was six and, soon after, had an implantable cardioverter defibrillator (ICD) fitted. This is a device that gives a small electrical shock to return the heart rhythm to normal. Callum has also had an ICD fitted to protect him from dying suddenly.
There is no cure. You just hope and pray for the best
Richard says: “When we were first told about the long QT syndrome, we thought there must be a cure, maybe a heart transplant or something, but there is no cure. You just hope and pray for the best.”
The condition means that their grandchildren haven’t been able to do all the same things as others their age; competitive sport and big fairground rides are out of bounds, for example.
There have been a few arguments along the way. “It has been hard when we haven’t been able to let them do things,” says Jeanette. “They would both like to do sport and Callum desperately wants to join the football team, but he can’t. I don’t argue with them about it anymore. I just say ‘When we go to see the cardiologist, we’ll ask him.’ It’s a lot easier that way.”
She adds that most of the arguments they have these days are about normal things like playing their music too loudly. “When they became teenagers, they just wouldn’t give in!”
Jeanette says she has been more protective of Becky and Callum than she was of her own children, partly because of their heart conditions and partly because “I feel sad for them because they don’t have a mum and dad”.
She has gradually learnt to step back, but the loss of their parents has always been in the background, particularly on big days like starting school. “It hasn’t been easy, especially because we thought we had done those things for the last time with our own children,” she says. “There have been so many times when we’ve wished their parents were here for them.”
We have never had time to grieve over our son and daughter-in-law. We had to pull ourselves together and just keep on
Last October, the teenagers, now aged 16 and 14, went away without their grandparents for the first time to the BHF’s Weekend Stunner. The bi-annual adventure weekend includes theatre workshops, physical activities and social events for teenagers with heart conditions, with trained professionals on hand.
Jeanette and Richard spent their rare weekend of freedom at their caravan in Tenby, although anxiety about their grandchildren was always at the back of their minds. As for Becky and Callum, Richard says: “They had a wonderful time and met some wonderful people. It’s made us more relaxed seeing that they really enjoyed being away – Callum, in particular, has grown in confidence.
“It’s made us realise that they are growing up. We have to start backing off and giving them more responsibility.”
Young at heart
Caring for their grandchildren hasn’t been easy. “It is difficult, having your grandchildren all the time,” says Jeanette.
“We have never had time to grieve over our son and daughter-in-law. We had to pull ourselves together and just keep on.”
But, as Richard adds, there have been plenty of rewards, too. “Kids keep you young,” he says. “If it wasn’t for having our grandchildren, I wouldn’t know half the things I do. You watch the children growing up and that is a reward in itself.”
Read granddaughter Becky's story
Visit our website for teenagers with heart conditions
Want to know more?
Do you know a teenager with a heart condition? They might be interested in our programme [email protected], which helps them to meet others in their position. Visit yheart.net or call 020 7554 0404.