“We were at breaking point. Then Keech was there.”
Sue, 39, and Duncan, 38, from Stevenage, felt overwhelmed when they were told six-week-old Skylar had a rare condition called dystonia. Keech Hospice Care has made the family feel safe and supported again.
“For the first six weeks of her life, Skylar was a happy baby with a beaming smile,” dad Duncan said. “Then, in March 2018, 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 home.
“A few days later, Skylar hadn’t improved. Her eyes were still going to the left and she was moving her arms around in a strange way. We tried everything we could to calm her but it wasn’t working so we took her to hospital again. We called ahead and, within seconds of getting there, they took Skylar. That’s when she had a seizure that lasted 45 minutes.”
Skylar 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 diagnosis was heart-breaking for the family. “She had such a beaming smile but, since the seizures, Skylar hasn’t smiled at all,” said Duncan. “She’s barely able to sleep. She has been fighting all her life - she can’t switch off.”
“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.”
Keech’s community team calls
“We were introduced to Keech Hospice Care in April 2018,” Sue continued. “Melissa and Faye from Keech’s 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.
“When they discovered that a warm bath is the only thing that relaxes Skylar, they thought the hydrotherapy pool at the hospice would be great for her. They also thought being around other parents in a similar situation would help us, too, and mentioned there is support at Keech for our other children, if they needed it. Within half an hour, we were totally at ease.
An amazing transformation
“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 in Skylar was amazing.
“The medication changes also helped relax her hands. When we first came, she was gripping them so hard her little nails were digging into her palms.
“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 while we could be close by.”
“I feel safe going to Keech,” Sue said. “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.”
One call to Keech
“A couple of weeks ago, Skylar’s medication stopped working as well as it had been,” Duncan added. “One call to Keech 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.”