The family of a baby girl who spent the majority of her first year of life in hospital are delighted to be celebrating her first birthday at home.
Emma Gulliver spent her first Christmas and New Year in Great Ormond Street Hospital (GOSH), but has been able to celebrate her biggest milestone yet at home.
Emma’s brothers are excited to have her home in time for her birthday.
Just a week after Emma was born last February, she was diagnosed with Hirschsprung’s disease- a nerve condition which causes serious chronic constipation.
Her family’s lives were turned upside down when a week later doctors suspected Emma had a breathing condition called congenital central hypoventilation syndrome (CCHS), which caused her to take shallow breaths and hyperventilate.
Emma’s parents were told she needed to be transferred to Great Ormond Street Hospital (GOSH) for a lifesaving tracheostomy and ventilation. For the following four months, Emma was treated in GOSH – over 125 miles away from home. During this time, Emma’s mum Claire was supported with free ‘Home from Home’ accommodation provided by The Sick Children’s Trust. In November, Emma underwent further surgery at GOSH and although the procedure went well, she has had numerous infections and remained in hospital until January.
Relieved mum Claire said, “It’s been lovely having Emma home and settling into a routine with her. The boys have loved having their mummy and sister around again and have been playing with Emma a lot more now she can sit up and interact with them!”
Looking back on the year, Claire added, “We had to wait a month at the Norfolk and Norwich Hospital before we could be transferred to GOSH. The thought of going to another hospital so far away from our home was very scary. We knew we could be there for months and I worried about how our family would be able to support each other during this extremely difficult time. My husband Chris is a businessman, and could not take time off work for months on end, and our little boys, aged just five and two, needed to stay at home to go to school. I knew I would have to go with Emma to London alone. Miles away from home and with a very sick child, I felt very lonely, upset and confused. I couldn’t bear the thought that our family would have to spend months apart, but we couldn’t afford to keep the whole family together in central London hotels either.
“Thankfully, it wasn’t long before I was offered a room at Guilford Street House – free ‘Home from Home’ accommodation run by The Sick Children’s Trust. Having a room at Guilford Street throughout Emma’s treatment was amazing; it enabled me to be near Emma so I could be trained in her care and bond with her. It also meant the rest of the family could visit her regularly and her brothers could understand her condition and get to know their little sister better.
“Although Emma has spent the majority of her first year in hospital, we really are hoping that she makes some great improvements this year.”
