Noah and Jasmine’s story…

After 2 rounds of IVF/ICSI, the day our ‘longed for’ twins were to be born arrived. We are still in shock what happened soon after. On day 4, Noah became unwell with a suspected heart defect. He was transferred to St Michael’s neonatal unit in Bristol from Gloucester that evening and an echocardiogram confirmed that he had a Coarctation of the Aorta and a large VSD. Surgery was the only way forward to save his life. We were devastated. Jasmine was left behind in Gloucester until they could transfer her to be in St Michael’s also. At 3lb 13oz and tube fed, she was unable to be discharged from hospital to our care.

A day after Noah was admitted to St Michael’s neo-natal unit, Jasmine was transferred assuming she was fine –just a tired baby who wasn’t feeding due to her small size. However, on the morning of Boxing Day 2011, whilst having a cuddle with Mummy, she presented with a gasping sound and after Daddy held her to see what was happening Jasmine quickly deteriorated. In 30 seconds our world was turned upside down (again). A huge team of medics rushed in and we were ushered to a small room where we waited for hours. A different Cardiologist came to talk to us.

He told us that in all his 20 years, neither he or his colleagues had ever seen the combination of heart defects she presented with. She had Tricuspid Atresia, Hypoplastic Right Heart Syndrome, Truncus Arteriosus and bicuspid truncal valve. Jasmine has half a working heart. They couldn’t ever ‘fix’ her but instead treat her with palliative surgical options – but at that point, surgeons had no idea how or if they were going to proceed.

Flash forward to 28th December 2011 and whilst there was no clear consensus of what they were going to with our daughter, the surgeons had a plan for Son. He underwent a thoracotomy (through the side of his chest) to ‘correct’ his Coarctation of the Aorta. After battling a serious complication of the surgery – a chylothorax with chest drains and special diet, 6 weeks later, with a rapidly deteriorating heart, he underwent open heart surgery to patch the large VSD. The change in Noah after this surgery was nothing short of miraculous – he instantly gulped down a bottle of milk, something he had never managed before and literally thrived from that moment on with just a few medicines, he was finally discharged at 10 weeks old.

Jasmine, of course, was a much trickier case to contend with. She was tiny –and running out of time for intervention. They decided the Sano Shunt (a small shunt between the right ventricle and the pulmonary artery) was the way to go. We will never forget the haunting words of her amazing surgeon – ‘it is very risky. But if I don’t try this, she will die’. She spent over 7 hours in surgery, over 2 hours on heart bypass, 3 blood transfusions and her chest left open due fluid build-up. She returned to PICU and, terrifyingly, we almost lost her on a few occasions due to sepsis and other complications.

After 2 months in Bristol, they were both discharged home. We finally felt a little like a family. However, within a week, Jasmine became very ill once again and for the next 5 months underwent substantial treatment in Bristol Children’s hospital – a prolonged stay in PICU, a BT Shunt thoracotomy operation, Glenn Shunt open heart surgery to name a few and many weeks on the cardiac ward. During this time, we were lucky to stay at the Ronald Macdonald House. Hospital became our home and we somehow managed to get through it. Finally, we made it home in late July 2012 along with copious amounts of medicines, feeding tubes and a strict regime.

7 years on from the start or our heart journey, there have been a plethora of issues and diagnosis for Jasmine – a Gastrostomy placement as she is fully reliant on tube feeding, Fontan Open heart surgery, a dozen or more admissions for acute illness, unsafe swallow, immunoglobulin deficiency and more operations on the horizon in the future to repair further defects. Jasmine is helped greatly at mainstream school by having full time one-to-one support and despite everything, is a happy little girl. Life certainly isn’t always easy or conventional in the Heath household but we grab each and every opportunity to enrich Noah and Jasmine’s life the best we can.  A HUGE THANK YOU TO Noah and Jasmine’s parent’s for sharing their journey.

Maggie’s story…

My four-year-old daughter was diagnosed with Tetralogy of Fallot when she was ten days old and required open heart surgery when she was six months old to correct some defects in her heart. She was a poorly baby and was tube fed for eight months of her life. She has since been diagnosed with autism. 

I recently attended a pottery event organised by Heart Heroes. It was great to be able to meet other families of children with heart conditions and share stories and feelings with people who have been through the same as you. To be able to share frustrations and fears, as well as have fun and make new friends is very much needed. Heart Heroes creates wonderful opportunities for many families for which we are very grateful.

It can feel very lonely and isolating having a child who is poorly or who has developmental issues, so to meet families who ‘just get it’ is very comforting and helps you remember you are not on your own.

Without Heart Heroes…

‘Without Heart Heroes, my daughter would feel so isolated and Alone. That she isn’t the only child that needs extra looking after and extra special. Without HH, we wouldn’t have other parents to talk to, to ask advice or have the empathetic ear we need to understand what we are going through. The days out, where the girls don’t feel different, special but normal and included. HH is like being part of a big extended family’ Heart Parent’

Support means everything…

‘As a parent I would love it if people would support heart Heroes because its brings joy to the children who are struggling with a lifetime condition. As a mother to a cardiac child having gone through all the ups and downs and seeing the stages that we’ve seen with our child… To have a charity that supports each child to bring back that joy and happiness in just the littlest of ways makes us as parents happy. Having different events organised for the children makes them smile and gives them a time of happiness and to forget their illness’

A GREAT WAY TO MEET PEOPLE

‘It can be very lonely as a heart parent, especially if your child is complex so having events thats are fun for the children also the parents gives us that little break from the busy hospital lives we normally live. Its great way to meet people that understand the struggles we face every day and just get you as a person who cares for your child (not a lot of people understand our lives) and its nice to talk openly with similar people.

And obviously it is lovely to have someone like Kelly always there wanting to help us in any way she can and push a smile on our faces whenever possible. We all appreciate having someone like Kelly running Heart Heroes’