After her own son lived for just 19 minutes, Carrie Curtis tells Sarah Freeman why she wants to help others
When Carrie Curtis gave birth to her son Charlie she was already prepared for the worst. At 18 weeks, doctors had told the 20-year-old, from Middleton, Leeds, her unborn child had Potter’s Syndrome.
With little fluid in the womb, the prognosis was not good and scans revealed that little Charlie had just one kidney and his heart had developed on the wrong side. Carrie was offered a termination, but decided to carry on with pregnancy, determined that she would not be the one to rob him of the gift of life.
It was a decision she has never regretted and she still treasures the time she got to hold her first child, before he passed away in Leeds General Infirmary. In the end Charlie lived for just 19 minutes, but his legacy has endured for much longer.
Following his death in December 2012, Carrie, along with other members of her family set up a charity Charlies Angel Centre with the aim of offering support to other bereaved parents. The last two years has seen the group undertake a major fundraising effort and their latest challenge is to raise enough money to pay for a CuddleCot for the LGI.
It looks like any other Moses basket, but the specially adapted cot comes with a vital temperature control which helps keep a baby’s body cool allowing the parents to spend more time with their child in those first few hours after they have been bereaved.
“Dealing with the death of a baby is incredibly difficult and if we had been able to use a CuddleCot it would have made a big difference,” said Carrie as she launched the online fundraising appeal. Each cot costs around £1,500 and while they are looking initially to just buy one, they would like to see all hospitals have access to the cots.
“It’s not something anyone likes to think about, but the problem is that in a warm room the baby’s condition can quickly deteriorate and so the baby has to be transferred to and from the morgue. Not surprisingly that is incredibly traumatic for parents to be separated again and again.
“The CuddleCot cools the baby and so it allows the family to spend as much time as possible with their child, creating vital precious memories. For some that just means dressing their child, for others it allows them to take photographs, but for all it gives them time.”
Carrie, along with her family, have now launched a fundraising campaign which they hope will pay for at least one CuddleCot at the LGI.
“At the time, I think everyone who has been in a situation like Carrie has, goes on automatic pilot, but we saw what she went through and anything that can make that time more bearable for grieving parents has to be worth it,” says Ruth Curtis, Carrie’s step-mother. “When you go into a maternity hospital you don’t expect not to walk out with your baby.
“I think that was the hardest thing she has ever had to do, particularly because she could hear the cries of other newborns from the delivery suite. Setting up the charity and focusing are thoughts on efforts on specific fundraising campaigns has helped us all deal with what happened.”
While hospitals and maternity units are much better placed at dealing with bereaved parents than they ever have been, support remains patchy. Also, while many families receive immediate help while they are still on the ward, in the days, weeks and months after a death that they often find that there is nowhere else to turn.
When the rest of the world moves on and normal life returns for family and friends that can be when many experience the darkest of days.
“Our ultimate aim is to open a bereavement centre that is open 24 hours a day 7 days a week that will provide relevant information, bereavement counsellors and support so bereaved parents and families can access the support they need, when they need it,” says Ruth.
“No one can take away the pain which comes with the loss of a child. The truth is, grief is a very lonely place, but if we can make it a little easier for just one person we will have succeeded.”
To realise their dream the family is looking to initially raise £100,000, but in the meantime they are doing what they can to support families.
“The ripple effect from the death of a baby is huge,” adds Ruth. “When Charlie died we realised our other grandchildren were really struggling. They had stroked Carrie’s bump, but then there was nothing.
“One day we bought them both a teddy bear, which we called Charlie Bear, and the way they interacted with it really seemed to help. We realised that we might be able to do the same for other children, which is how we came to launch the Charlie Bear Packs.
“The pack, which contains a teddy and a letter from Charlie can be ordered free from the website and all we ask in return is that the family send us a picture of their Charlie Bear enjoying some adventure.”
Charlies Angels Centre recently won a Radio Aire Award for Inspirational Family and Carrie went to collect the award along with other members of the family.
“Those moments are strange, we are all incredibly proud of what Charlie has made us achieve,” says Ruth. “ But of course we would never wished that Carrie had been put into this position. All she wanted was to be a mum to Charlie.”