Meet our Appeal Patients

Subhaan's Story

Subhaan was born at 36 weeks weighing just 4lbs. He was struggling to breath and at one day old had a seizure, a terrifying experience for his family. This led to extensive tests being carried out on his tiny body.  Subhaan was born with a condition known as TAPVD which means his pulmonary veins didn’t drain in into the left atrium.  Less than a week later Subhaan and his family made the trip from his home town in Walsall to Birmingham Children’s Hospital where he has remained ever since. Now 10 months old he still has difficulties and has relied on a CPAP machine to make his breathing easier for many months. Thankfully he is currently being weaned off the CPAP and should soon be healthy enough to return home with his mum and dad to be looked after by his three big sisters. Thanks to the care and expertise of the medical staff at BCH Subhaan’s heart is now better and he is getting stronger by the day.

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Megan's Story

Megan was born 8 weeks premature with the congenital heart condition ‘Tetralogy of Fallot’. This means she has 4 things wrong with her heart, but fortunately with further surgery this can be repaired.
Megan has had 3 long stays at the Children’s hospital now, during which she has had a shunt fitted (like a bypass), two stents and had a patch placed on her pulmonary artery to widen it, allowing more blood to flow to the lungs. These are all temporary measures to get Megan through until she is big enough for her full repair which if all goes well should happen later this year.

Unfortunately along the way Megan has had a few problems including cardiac arrests, infections and bronchiolitis which have all prolonged her recovery from each operation. She has a thrombosis in her liver, probably due to her cardiac condition, which will also require further surgery at a later date.

We are grateful to all the doctors and nursing staff at the Children’s hospital for the care they have given Megan and we will be linked with them for many years to come.

Judy McCluskey  (Megan’s mum)

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Rebecca's Story

Becky was born with a congenital heart defect called Pulmonary Atresia.  The few hours after her birth were a blur as our new baby was taken by ambulance to BCH where I had my first experience of an Echocardiogram and saw my 18 hour daughter’s heart beating.  I was transported to a whole new world.  I had no idea that such technology existed nor that Congenital Heart Defects were so common, but to my immense relief, the Cardiologist was able in just a few minutes to diagnose exactly what was wrong and describe the likely course of action.

Pulmonary Atresia can affect the development of the heart to a greater or lesser extent and the first action was a Cardiac Catheter to investigate Becky’s precise situation.  This was done when she was one day old and revealed that she would need the Fontan Procedure and at 4 days she underwent open heart surgery to start the process of “re-plumbing” the heart to accommodate the under-developed right side. She spent several days in Intensive Care but to my constant wonder she was on Ward 11 within a week and was home in less than a month after she was born.

The Fontan procedure is performed in three stages and just before her second birthday she had part 2.  This was also open heart, but this time she was out of ICU in just a couple of days and was home within 10.  It then became a waiting game to know when the third and final part of the Fontan would be performed, but in January 2010 we met with her consultants and we agreed that it was time.  This was perhaps the hardest decision as outwardly Becky looked and felt fine – up to then every medical intervention had been a clear cut necessity - but this was about improving long term outcomes and quality of life.  All the medical staff were very mindful of our concerns and were open and honest about the options, but in the end it was our decision to give Becky the best shot as a normal a life as possible and I’m pleased to say that at the time of writing, she is recovering from the final open heart surgery that appears to have been wholly successful.

You would never wish the experiences we have gone through on anyone, but should any family find themselves in our position then I cannot imagine anywhere I would rather be than amongst the expert, professional and most of all caring staff at Birmingham Children’s Hospital.

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Cian's Story

We found out there was something wrong with Cian’s heart on our first scan. We were then transferred  to St Marys hospital in Manchester for another. Its then that he was  diagnosed with Hypoplastic Left Heart Syndrome. Cian was born on December 15th 2005 weighing 8lb 12oz. He was then taken to the special care baby unit for a day and then onto Birmingham children’s hospital.

The day after he had arrived at BCH he had his first operation at just 3 days old. They call this the Norwood Procedure which is done in 3 stages, in-between the operations he has had cardiac catheters.
We are so pleased with the way he has coped with all the hospital visits and appointments he has to go to. When he was in for his very first operation we were in for about 8 weeks and most of that was to get him feeding properly as this takes up so much of his energy. His next two operations, including his most recent in march 2010, he was in for only 10 days!

He is now 4 years old and starting school in September. I am extremely proud of him; we would never go back in time to do things differently. We would never take him to any other hospital. He has been going here since he was only days old. Everyone is so understanding and very supportive. Ward 12 is fantastic there is so much for children to do from playing computer games (if they are not able to get out of bed they have a portable tv and games console for every child), to watching DVD’s, playing board games, painting and baking. There is even a lovely bright and airy playroom at the end of the ward.

It is very hard to put your child's life in the hands of total strangers however they work very hard and extremely well, I wouldn’t want to take him anywhere else.

Victoria Watson

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Lily's Story

Hi my name is Lily.

I was first diagnosed as having a heart problem (aortic stenosis) in June 1998 when I was two and half years old.  Since then I have been seen regularly at the heart out patients’ clinic of BCH, until I was admitted to the hospital in 2000 to have a balloon dilation of my aortic valve.

I have since been followed up in clinic, until I was admitted to Ward 12 in march 2010 to undergo a Ross procedure. My latest operation involved a stay in intensive care for 2 days followed by a stay on ward 12 for a further 8 days. During which time I was watched and taken care of by the kind and helpful staff.

The outpatient visits have always been cheery, quick and easy. The staff are all very nice, caring and a good laugh too. They’d always answer my questions with a smile in a way I could understand.

At the start at each shift the nurse would introduce herself and ask you how you were and if you needed anything. There would be regular checks all through the day and the night. I probably had enough checks during my stay that I could tell you how each machine worked and how to set it up!

Right now as I’m writing this I am actually still in my recovery stage, I have returned home from BCH and am in my second of six weeks recovery. To me this shows how quickly you really can get back on your feet; with the right help of course!

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Anyia's Story

Anyia spent the first 14 months of her life at BCH. This meant so did I, and her 4 year old sister Rhyia (pictured) and my wife Jenny.

Anyia was born with Complete AVSD with hypoplastic arch, which basically means she had holes in heart. She needed constant watch, long stays in intensive care and 5 surgeries before she was 9 months old.  Luckily, we were at the best hospital in the UK so the treatment she received was phenomenal. We cannot thank the expert staff enough for what they have done and for being calm and supportive through all those hours and hours of agony whilst we hoped and prayed that Anyia would be ok.

Thankfully, she has got stronger and we were able to take her home 10 months ago, so our house is now home to all 4 of us.  As she gets older she will need to return for further surgery,  of course all three of us will be right by her side.

As you can see, with a complex heart condition, Anyia's had a fair few surgeries to battle through which makes our time with her all the more valuable and enjoyable.

Paresh Parmer, Anyia’s dad.

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