From Great Ormond Street Hospital (GOSH) patient to budding gymnast, 14-year-old Hannah is an inspiration to her mum, Naomi…
Diagnosed during pregnancy
When her mum, Naomi, was 20 weeks pregnant, Hannah was diagnosed with a CCAM (Congenital Cystic Adenomatoid Malformation) of her left lung. Naomi was referred to the Fetal Medicine Unit at University College Hospital London, where they inserted a shunt into Hannah’s lung and drained the fluid from the cyst. Naomi and Hannah were then monitored for the rest of Naomi’s pregnancy, with a view to inducing Naomi at 38 weeks.
Just hours after she was born, Hannah went into surgery at GOSH.
“Hannah had to have an operation at GOSH to remove the cyst on her lung and she also had to have corrective heart surgery on top of that,” recalls Naomi.
“After surgery, Hannah was put on a ventilator with the hope of weaning her off it over a period of time. However, Hannah’s trachea was weakened by the cyst and so her trachea collapsed, meaning that she wasn’t able to be taken off the ventilator. She had to have a tracheostomy as it was clear she was going to be a long-term ventilated baby,” says Naomi.
Hannah stayed at GOSH for three months and was then transferred to the SCBU at The Lister Hospital in Stevenage where she remained for a further three months.
“Hannah went back to GOSH later in 2002 and was successfully able to come off the ventilator,” says Naomi. “Hannah finally came home at the end of August 2002 – six months after she was born – but she still had a tracheostomy tube. The year after, she was able to have the tracheostomy tube removed at GOSH, but she had an open hole in her neck for another year, before it was surgically closed.
The biggest challenge
After everything that they went through, Naomi still vividly remembers the biggest challenge.
“The hardest part for me was that I wasn’t physically able to hold Hannah when she was born. The first time I got to hold her was after three or four days and when I did it was for very short periods of time.
“Hannah was my first child so being a new mother under the spotlight and having to change nappies and goodness knows what – doing all of that with extra tubes and wires and machines in the room, especially when you’ve not done any of it before is really hard.”
Hannah continues to see a paediatrician twice a year at their local child development centre and is under the respiratory team at Brompton hospital, where she has recently undergone sleep studies to make sure she does not require oxygen at night.
“Our experience at GOSH was hard and often overwhelming though Hannah’s care was excellent – GOSH did everything to support Hannah and myself. Hannah has got better and stronger as time has gone on. She’s now a lot stronger.”
Determined and inspirational
Hannah, who is now 14, is truly inspirational. She’s currently studying for her GCSEs, choosing triple science, Latin and drama, and she has a starring role in her school’s forthcoming production of Macbeth (she’s playing one of the witches). She’s also a member of the gymnastics squad at her club, competing regionally in floor, vault, beam and bar categories. She trains two hours during the week, every week, and four hours at the weekend. She’s focussed, determined and – thanks to the support and encouragement from her mum, Naomi – Hannah doesn’t let anything hold her back.
“You don’t know you can do these things until you try,” says Hannah.
Hannah doesn’t remember a lot about her experiences at GOSH, though she is reminded of her medical history when she pushes herself too hard.
“The treatment and surgery I had when I was little does still affects things today,” says Hannah. “I still get quite tired in PE for example and I can’t really do lots of running. The people at gymnastics know that I have a complicated medical history so they know when I need to take a break and they are very supportive.”
While Hannah can’t physically cope with cross country running, she does pretty much everything else and is looking forward to a skiing trip with her school shortly.
“Always believe in your child and their ability,” says Naomi.
“And don’t let anything stop you from what you want to do,” adds Hannah. “No matter what happens.”
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