Having a brother or sister with half a working heart can be tough, but you’re in the right place for support.

Being a sibling (brother or sister) of someone with a single ventricle heart condition can be really hard. Like any sibling relationship, there will be things around fairness, competition, reliability, and enjoying time together. However, when your sibling has a single ventricle heart condition, these feelings can be much more intense. You might feel like you want to have a “normal” life, but you might also want your brother or sister to get the right sort of support so they can have a “normal” life too.

As a sibling, you play a big and important role in the life of your brother or sister. Not only will you play a part in their social life, but you’ll probably also help your parents look after them, speak up for them, and help them learn and grow.

Sibling support – As a registered sibling member of LHM, you have access to our new messenger service, the LHM Youth Hub. Our youth hub works like the messenger apps you’re used to, but with the added safety net of LHM. A safe digital space to chat with other siblings going through similar experiences. (This service is currently only available to registered youth members of Little Hearts Matter, aged 7-17) 


You can also check out Sibs, a charity for brothers and sisters of disabled children and adults, where there’s lots of information and support specifically for siblings.

Mia's Story

Mia's sibling story as told by LHM parents Dexter and Hayley.

“Mia’s journey started the same as any other perspective sibling. She’d spent 8 years as an only child and was excited about becoming a big sister. She had a chalk board, counting down the weeks until Marley was born. At the 20 week scan, Mia’s life was flipped upside down just like ours. As parents, we tried our best to soften the blow and explain it to her in the kindest way, that her brother was going to be born with half a heart. She was upset and withdrawn for weeks after and really nervous about Marley’s birth date. Despite this she tried to be strong and supported me and mum all the way through.”

“When Marley was born, there was no chance for Mia to see her baby brother because of visiting restrictions and her first glimpse of her baby brother was when he was being transferred to BCH, as he was put into the ambulance. She was so happy to see him but so upset that we were going to be spending some time away from home. Mia knew that Marley was going to have an operation but we couldn’t put any timescales on how long we would be away, as the different stories we had read, varied so much.”

“As it was, Marley was in hospital for considerably longer than we expected. Stranded away from home, the hardest part for Mia was being at home with her Nan whilst we were in Birmingham. Daily FaceTimes and online games helped to cheer her up but she desperately missed us being at home.”

“At school, Mia struggled to maintain her emotions as her friends were always asking why her mum and baby brother weren’t picking her up from school. Yet she still managed to thrive with her school work and her teachers were full of admiration at how well she was coping.”

“Weeks went by where we were unable to see her, but after what seemed like forever, she was finally able to come down to us to visit for the weekend. This continued, every weekend and was the highlight of her week, always looking forward to coming down to us, where we had a chance to take her into town (visit the old police station opposite from the hospital) and spoil her with Starbucks dates and shopping sprees. As the weekend drew to a close, it was always so hard seeing her get in her grandads car to be taken back home.”

“For weeks this continued until finally, as a surprise, ward 11 agreed that she could quickly pop onto the ward to finally meet her baby brother for the first time. She was ecstatic, so happy and the best part of her year. After this, the weeks flicked by, with weekend trips down to see us until finally, on Good Friday, we were finally able to take Marley home.”

“We’ve never seen Mia look so happy, having her family all back together under one roof.”

“We can honestly say, Mia’s optimism and strength as a CHD sibling has helped me and mum through some very tough times. She is the strongest, bravest and most caring CHD sibling we know. Marley and Mia have developed such a strong bond and the love between them is clear for everyone to see. She has shared Marleys story with her class mates, as a “Showcase my interest” presentation.”

“This has given her the opportunity to teach her friends all about Marleys condition and educate them about everything both she and Marley have been through. This has made her feel so much more comfortable about her special brothers unique heart and, if anything, has made her cherish every moment that she shared with him.”

“Mia knows that it is going to be a long journey, but she also knows that Marley is a strong boy who has overcome so much and he is in the best hands when he is at BCH.”

“Mia is prouder than ever to be Marley’s big sister.”

Mia’s sibling story was kindly shared to us by LHM parents Dexter and Hayley for #HeartMonth.