This Congenital Heart Defect (CHD) Awareness Week, Cheryl, our Nottinghamshire Branch Lead, shares the remarkable story of her son, Ben, and the reality of living with CHD.

Ben was born on October 19, 2012, following a healthy pregnancy and birth. At just four hours old, concerns about his health began to emerge. Initially, doctors suspected a lung issue, but further investigations revealed that Ben had Transposition of the Great Arteries (TGA)—a serious congenital heart defect.

TGA is a condition where the two main blood vessels leaving the heart, the pulmonary artery and the aorta, are reversed. This means oxygen-rich blood is not circulated to the body properly, creating a life-threatening situation.

Ben required an emergency transfer to Glenfield Hospital, as his condition was critical. By the time he arrived, he had turned blue due to lack of oxygen and needed an urgent balloon septostomy—a procedure to create a hole in the heart, allowing oxygenated and non-oxygenated blood to mix.

At just five days old, Ben suffered a seizure, resulting in brain damage. Doctors warned that he might never walk or talk. Despite this, his family focused on his recovery, determined to get him strong enough for the next step: open-heart surgery.

At just three weeks old, Ben underwent an eight-hour open-heart surgery, performed by Mr. Lotto and his team. After nearly two weeks in the Paediatric Intensive Care Unit, Ben was finally strong enough to go home where he proceeded to thrive.

By age two and a half, Ben was diagnosed with autism, sensory processing disorder, hypermobility, and other conditions. Though he is non-verbal, he is full of joy, energy, and resilience.

At age four, Ben started attending a specialist school, and today, at age 12, he loves participating in Little Miracles sessions where his mum, Cheryl, leads the Nottinghamshire branch.

Despite ongoing regular heart check-ups for a leaky valve, a narrowed artery, and a heart murmur, Ben continues to thrive, proving every day that challenges do not define his incredible spirit.

"We started coming to Little Miracles whilst Violet was undergoing diagnosis for her disability. At the time I knew she had a problem with her mobility but I didn’t know to what scale, or the implications it would have on her health or our family. Since then she and also her little brother Charles, have been diagnosed with spinal muscular atrophy.

Violet loves coming to Little Miracles and it’s lovely for her to be included in every activity. It’s not just a safe, fun space for her to play. It’s somewhere that we as her parents can come and chat with other parents who are going through similar struggles.

We particularly enjoy the coach trips which without Little Miracles, we wouldn’t be able to afford days out like this.

Thank you so much, for always providing a welcoming place for our children to play"

"We are Sharon and Sonny and had have been part of Little Miracles for a couple of years now. We always feel welcome and supported. I know that if I needed help or advice with anything that I can ask.

Sonny has Autism and was only diagnosed aged 5. If I had an earlier diagnosis we would have done lots more with LM when he was younger. Before Sonny was 5 I found it so difficult to entertain him every day. Sonny likes to go out and would always want to know where are we going today. I exhausted all the parks in about a 30 mile radius. We used to go to places that weren’t too busy so he didn’t get too overwhelmed. The local area childrens stay and play type things did not hold his interest plus it was stressful for me as I didn’t know how he would react or behave especially when the singing would inevitably begin. The summer before Sonny started school was a very lonely and overwhelming, stressful time for me, how to fill 6 weeks?

Once we found Little Miracles there were so many things to choose from and so varied. We have done lots of firsts with Little Miracles including rollerskating, which he really took to straight away and it wasn’t too busy and he was ok with the music too. Recently we went to our first ever cinema trip, he does not sit and watch films usually but as it was Peppa and it was with Little Miracles we could relax and know that if he didn’t sit the whole time it would be ok and also when he talked loudly through some of it that was ok too. We go to pretty much every bouncy thing we can and he just loves it and it takes a lot of pressure off of me too and he gets to socialise. One of our favourite outings is Fenland Light Railway he loves going on the train and watching the Model Thomas train. At Christmas we went to Sandringham to see the lights and it was just magical. It was magical for us all because we got to go to something that we could be in safe company but also something that if it wasn’t for Little Miracles we would not be able to afford. We are members of Litttle Miracles Ramsay, Fenland, St Neots and Ely and now much more is happening closer to home in Huntingdon which is perfect for us. Sonny loves to know what he is doing and where we are going and when so to be able to book things up is fantastic. I no longer dread school holidays as I know there will be things to do. Little Miracles is brilliant and we would be lost without it. 

Thank you!"

"Oliver was born severely disabled. During my pregnancy the doctors told me that he was in a state “incompatible with life”. They said Oliver’s life, if he were to make it that far, would not be a life worth living. At 35 weeks pregnant I felt pressured into terminating his life.  We were made to think it would be the kindest thing for Oliver. As a family we decided that for however long Oliver was to live that he would know he was loved.

Oliver spent 15 months in the Neonatal Intensive Care Unit before he could finally come home with us to Peterborough. I quickly had to adjust to the 'new normal'. Looking after Oliver was hard however it was the isolation that was crippling. My family and friends could not relate to what I was going through, my social circles broke down... I felt totally alone.

My story is far from unique. 11% of children in the UK are born with a disability. There are nearly 1.4 million families like mine, each with their own struggles, ambitions and stories to tell.  Yet the families we meet often tell us that they feel alone and that isolation is the hardest battle they face.

I started Little Miracles to ensure families that have children with additional needs, disabilities and life-limiting conditions can access the care and support they need and connect with each other in confidence and without judgement. I don’t want any family should have to feel as alone as I did.

Oliver is now 16. Oliver is still a poorly little boy who relies on machines to keep him alive but he is a bubbly, funny young man who is loved by everybody. Even 16 years on we are challenged by ‘the system’ every day. We have to fight for healthcare, for respite, even for Oliver’s right to an education.

Having a child with a life-limiting condition is draining, even with all the support in the world. But with the help of people like you things are a little easier.  

We are just a normal family trying to give our son the best possible life, no matter how long he is with us and with the help of people like you things are a little bit easier.  

Thank you for being there for my family, and my son.”

 

“Delilah is a loving and happy almost 5-year-old with Rett syndrome.

At age 2 Delilah stopped talking almost overnight, shortly after she began to experience prolonged screaming episodes where she would be inconsolable. She then began to have times when she would stare blankly. After hearing tests she was seen by a neurologist who believed she was experiencing absent seizures and was concerned with her language regression. He believed she had a genetic condition and testing was arranged straight away. 

After 8 weeks we met with a genetic consultant who said all of Delilah’s initial genetic tests had not shown any mutations. However, from meeting Delilah she was confident she knew what condition she had and ordered the specific test.

That day was the first time I had heard of Rett Syndrome. I was told to go home and read about it. As soon as I did I knew that this would be what Delilah had. 

Over the next year Delilah began to lose weight, experienced drop seizures and convulsions and became more unsteady on her legs. It took 10 months for the results of the tests to come back and when they did it confirmed she had a gene mutation and Rett Syndrome. 

Delilah was diagnosed in April 2022, she was 3 years old at the time of her diagnosis.

Since then she has had PEG (feeding tube) surgery and is now almost NIL by mouth due to recurrent chest infections. She is due to have surgery on her eyes and requires adapted seating and a wheelchair to slow the curve of her spine. They believe that her epilepsy is uncontrollable because despite medication she is still experiencing daily seizures which are worsening, and Delilah is now unable to communicate now.

Getting everything in place for Delilah has been incredibly difficult, over the past 2 years Little Miracles have helped get Delilah her wheelchair and have given us a huge amount of emotional support. She attends a SEN school that she loves and where she is thriving and regularly visits the Little Miracles’ Sensory Room in Queensgate, a place where we feel comfortable and safe with our children.

Despite everything Delilah is very happy.”

Penny was struggling emotionally to support herself and her two children, both of whom have disabilities. 

Little Miracles helped Penny realise what an amazing mum she is and gave her the support and friendship she needed.