Brothers Armaani and Khiyaan have a form of Sickle Cell disease called Sickle D Punjab, and have both been patients on our Haemoglobinopathy Unit since they were born. It is a life long condition which means that the boys require monthly blood transfusions and regular monitoring. Their dad comes with them to their appointments. “The unit is a home from home for us” he says “the staff are really friendly and because they’ve know the kids since they were babies, we feel like they are part of our family” Seven year old Armaani goes further “I don’t really like having blood transfusions, but I really like all my friends here and we do have fun, so I sort of look forward to coming, but I have to bring my homework”.
The Haemoglobinopathy Unit at Birmingham Children opened in September 2003. It is the only paediatric Haemoglobinopathy Unit in the UK and treats children with inherited blood disorders including sickle cell disease and thalassemia.
When she was just 9 weeks old, Hannah underwent an operation to remove cataracts from both of her eyes. She wears contact lenses to help her vision, which is improving all the time.
Hannah is now monitored by our Eye Department team, and attends for regular check ups. Her parents are both partially sighted and rely on a neighbour to help Hannah with her lenses. However, with the help of staff from the Eye Department, Hannah has already learned to remove them herself – a huge achievement for a four year old. Mum Julie is very proud of her daughter and full of praise for the department “Everyone has been extremely helpful to us” she says “and happy to welcome our guide dog, Emmet, into the hospital too!”
The Eye Department at Birmingham Children’s Hospital is a specialist centre for childhood cataracts and other sight threatening diseases in children and is one of only 2 national centres in the UK for retinoblastoma (childhood eye cancer).
14 year old Laura has Cystic Fibrosis and has been a patient at Birmingham Children’s Hospital since she was 6 months old. Her condition is managed with physiotherapy carried out at home, but she regularly visits the hospital for more intensive treatment which can last for 2 weeks at a time. This obviously means that she misses out on a lot of school time, so she works with our on-site school to ensure that she keeps up with her work.Once she reaches the age of 16, Laura will transfer to an adult unit.
“Everyone on the ward is lovely and kind” Laura comments “they have helped me to understand my condition and to learn how to do the physio. I will really miss them all when I have to move to an adult hospital – they are great at everything they do!”
Millie contracted E-Coli when she was 18 months old and was left with permanent kidney damage. Until recently she came to Birmingham Children’s Hospital for Haemodialysis treatment 4 times a week. Happily, in December 2009 a suitable donor was found and Millie underwent a kidney transplant. A bright and lively five year old, Millie is delighted that she will now be able to go swimming with her friends and even happier that she is able to eat all her favourite foods at long last.
Mum Karen said “We have been coming to the Renal Unit for such a long time that the staff have become a sort of second family to us and the Unit itself like a second home. We are so grateful to everyone who supported the Kidney Kids Appeal to help fund the brand new unit. It’s so bright and welcoming and will make such a difference to families like us who spend so much time in hospital.”
Nathanial was just hours old when he arrived at Birmingham Children’s Hospital. He was born with a condition known as Grand Exomphalos, where the stomach muscles fail to close over the abdomen, yet the skin does. Nathanial’s liver, spleen and the majority of his bowel had herniated through the belly button into the umbilical cord leaving essentially a large balloon type mass hanging from his abdomen. This was compounded further by the narrow nature of the opening that his vital organs and blood vessels were passing through and the fact that the mass was essentially as large as his abdomen. Nathanial has been attending the hospital for the past 5 years and undergone many operations for treatments ranging from needing necklines inserted to full surgery to insert patches, tissue expanders and also skin grafts.
Dad James said “Nathanial would like to say thank you to all the doctors and nurses that have helped with his care and treatment of his condition. As parents we would like to express our gratitude for everything Birmingham Children’s Hospital has done for our little boy.”