Couple Sue and Duncan, from Stevenage, felt overwhelmed when they were told six-week-old Skylar had a rare condition called dystonia.
However, Keech Hospice Care has made the family feel safe and supported again.
If we hadn’t gone to Keech, Skylar would still be in pain now and that thought is unbearable.
Duncan, Skylar's dad
"For the first six weeks of her life, Skylar was a happy baby with a beaming smile," dad Duncan said. "Then, last March she started projectile vomiting and we noticed her eyes kept moving to the left. We took her to hospital and they told us it was a twisted bowel. We were then transferred to a London hospital where they said her bowel was fine and discharged us."
The family were still worried about their daughter’s condition a few days later so took her to hospital again. Shortly after arriving the little girl had a terrifying seizure that lasted 45 minutes. Skylar, now one, was put into intensive care where a scan showed she had had a bleed that was putting pressure on her brain. "We were devastated," Duncan remembered, "and had the terrifying thought that she was going to die."
Skylar was diagnosed with dystonia, a rare condition causing uncontrolled muscle cramps and spasms as well as body twisting and tremors. Her sight has also deteriorated over time so she is now blind.
The news was heart-breaking for the family.
"Skylar was in so much distress, crying and screaming all the time," said mum Sue, "and we knew she was in pain. We kept asking what we could do but were told we’d have to wait to see. We were at breaking point. Then Keech was there."
"We were introduced to Keech Hospice Care in April last year," Sue continued. "Melissa and Faye from the community team came out to see us at home. The idea of going to a hospice would have terrified us but they explained that Keech does so much more than care for people at the end of their lives.
Community staff at the hospice were able to suggest the family use their hydrotherapy pool to relax Skylar. There was also support groups for parents caring for a sick child and a group to help siblings. These facilities are part of the daycare services Keech can offer families.
"A week later, we went to the hospice for the first time and were just blown away. The doctors and nurses were brilliant. Skylar had been in pain for months. Very quickly, the team changed her medication and, within a few hours, the transformation was amazing."
Amongst the many specialist services Keech has to offer is the Children’s In-Patient’s Unit.
"We were offered a stay at the children’s unit so the team could manage Skylar’s pain. We didn’t feel we could leave our baby completely so we stayed in the family accommodation. We were so tired; it was fantastic - we had 100% trust in those looking after Skylar with the comfort of being close by."
"Before, I was scared to go out on my own with Skylar in case something happened. Now, day trips with Keech get us out of the house, the hospice staff are there if Skylar is poorly and all the parents support each other. Just the fact you can call Keech day or night means so much."
"A couple of weeks ago, Skylar’s medication stopped working as well as it had been," Duncan added. "One call and a community nurse came out and tweaked the medication for her."
Sue and Duncan both recognise they don’t know what the future holds but they are glad Keech Hospice Care will continue to be there for the family. "If we hadn’t gone to Keech," Duncan finished, "Skylar would still be in pain now and that thought is unbearable."
About Hospice Care Week
Hospice Care Week is a chance to join with hospices nationwide to celebrate the hard work, achievements and commitment of our hospice sector. At Hospice UK, we believe that everyone, no matter who they are, where they are or why they are ill, should receive the best possible care at the end of their life.