Emma Spends First Christmas In Hospital, But Hopes To Be Out For New Year

The family of a baby girl who is currently back in Great Ormond Street Hospital (GOSH) after spending her first seven months fighting for life, is hoping she will be out in time for the New Year.

Little Emma Gulliver, from Beccles, has spent the majority of her short life in hospital and this year will be spending her first Christmas in GOSH. In February, just a week after Emma was born, 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 hypoventilate. Her parents Claire and Chris 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 there ever since. Mum Claire is currently staying at Guilford Street House, just minutes from her daughter’s bedside. Claire says:

“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.

“Emma went back to GOSH for surgery in November and sadly hasn’t been able to be discharged. We really are hoping that she makes some great improvements this year, but currently it seems she won’t be home for her very first Christmas, which is very upsetting for everyone.

“Even though Emma may still be in GOSH for her Christmas, we won’t let that stop her having a very special one. All the family will be coming over and fortunately we can all stay at Guilford Street House. We have a wonderful friend though who has also offered for us to stay at her apartment at the start of the holidays which is so kind. We will be sure to have lots of snuggles and cuddles with our little girl on Christmas day and make it special for her brothers too. We have a tradition of giving our children a Steiff bear for their first Christmas so we'll look forward to seeing Emma unwrap hers.

“Hopefully Emma will be out for New Year’s Eve and we will all go down to Southwold beach, wrap us warm together and watch the day turn into night to celebrate starting the new year together as a family.”

This Christmas, while many families will be at home celebrating the festivities, hundreds will be by their sick child’s hospital bedside. The Sick Children’s Trust will be very busy over the holidays, supporting families with seriously ill children in hospital with free ‘Home from Home’ accommodation so they can create their own special memories on Christmas Day. Guilford Street House Manager, Tina Thake, says:

“We wish Emma a very special first Christmas and are so pleased that we can help keep her family by her side while she gets better in hospital. Over Christmas, The Sick Children’s Trust will support hundreds of families in its ten ‘Homes from Home’ across the country, helping them stay close to their seriously ill child. Although the accommodation is provided free to families, it costs the charity £30 to support a family for one night, and we rely entirely on kind donations from individuals.”