A Northampton mum is calling for a volunteer service to help affected families of congenital heart disease (CHD) following the birth of her son, who has four separate heart conditions.
Anita Hollman of Kings Heath, welcomed Charlie into the world back in 2014 and discovered he had four defects that affected the normal workings of this heart the day after he was born.
Mrs Hollman says that there are not enough carers trained in Northamptonshire to offer the right support to new families who find themselves leaving hospital with a child with CHD. She therefore turned to Lagan’s Foundation, a charity that can train volunteers to help with tube feeding and children from 0-5 years with heart defects.
She said: “When Charlie was first born I looked at all different support groups and charities that were around. We put Charlie's name down straight away because he is entitled to the care that they offer. Unfortunately, there hasn't been any carers who have trained in this area."
The nearest children's heart charity is as far away as Birmingham.
She said: “Because he is tube fed, they'd come and support with his feeds so I could have time with the other children or I could sleep. When he was younger, it was harder. Obviously, they’d have to be trained because of his heart conditions as well.
“He was born with CHD, he has four different types and we didn't know until 24 hours until after he was born.”
Mrs Hollman had an emergency c-section back in 2014 and had to stay in Northampton General Hospital overnight with Charlie.
Following a deterioration, the hospital picked up on Charlie’s condition and he was rushed to Birmingham Children’s Hospital in an incubator and was admitted straight to intensive care.
“They had to paralyse him on the way to hospital while in an incubator because he was so poorly,” she adds.
Charlie was fitted with a pacemaker at two-weeks-old and has already had two open heart surgeries as his heart works the opposite of the typical heart's anatomy.
Mrs Hollman said: “It's been a struggle ever since he's had bronchitis. He gets so poorly. We are in and out of the general constantly but as he is getting bigger he is starting to learn to fight them."
Charlie is now two-and-a-half years old and suffers from speech delays now and struggles to eat and drink as he is used to being tube fed.
She adds: "He’s really cute, he hates it. He says, 'no, I’m not cute mummy.' He’s boisterous loves running around and playing with his cars and dinosaurs.
"When he hasn't got his tube in you wouldn't know that anything was up with him really."
There are currently five families waiting for volunteer help in the Northampton and immediate surrounding areas.
Kayleigh Robinson, Family & Home Support Coordinator at Lagan's Foundation said: “We are committed to continuing to try and deliver a much-needed volunteer service to affected families, who often have nobody else to turn to when their child is sick.
“We are trying to bridge the often lonely gap families find themselves in when leaving the hospital with a child who has a heart defect or feeding difficulties.”
Christopher Allen, Senior Cardiac Nurse at the British Heart Foundation (BHF), said: “Congenital heart defects are diagnosed in around 4,000 babies each year in the UK and before the BHF was established over 50 years ago, eight out of ten babies born in the UK with a heart defect did not survive to their first birthday. Today around eight out of ten survive to adulthood.”
“The BHF has funded many research projects over the years into congenital heart defects and continues to do so to help create a better future for babies born with a heart condition. This is only made possible by our generous supporters who help us to fund our vital research.