Amber-May had Quadriplegic Cerebral Palsy and complex medical needs throughout her short life. Her mum Jackie had to constantly fight for care and support, and was by her side until she died 10 days before her eighth birthday in 2022.
This is Jackie and Amber-May’s story.
“Amber-May was born four weeks early on 3 April 2014. We knew something was wrong fairly quickly when she suffered a seizure and was taken to the local Neonatal Intensive Care Unit. Amber-May suffered more seizures two weeks later but was able to come home at four weeks old.”
The diagnosis of Quadriplegic Cerebral Palsy was a shock for mum Jackie and life to follow would become further complicated for Amber-May as she suffered a stroke at 15 months and a further seizure that would result in terrible brain damage, meaning life would become extremely difficult. As Jackie explains:
“After we were told how the stroke and seizure had led to permanent brain damage, Amber-May was then also diagnosed with CACNA1A which is a calcium channelopathy. My fight, and Amber-May’s had just begun.”
Fighting for care
Jackie constantly fought for more care and support for Amber-May and her other two daughters. Amber-May was now a complex needs baby and life was a constant challenge.
“To do the school runs I would have to take all three children with me and make sure that all Amber-May’s medications were packed into the car including the suction machine, milk machine and oxygen. She had to be constantly watched for choking episodes and suctioned if this occurred.”
Further complications with Amber-May’s condition would follow, with more seizures and the development of a movement disorder resulting from the brain damage.
“There were times Amber-May would cry for days and weeks to the point that I had to seek hospital assistance to help with the distress and they couldn’t even calm her down.”
The family had to move house because they needed significant adaptions for Amber-May. “For four years I slept in the lounge on the sofa next to Amber-May’s special hospital bed.”
There were times Amber-May would cry for days and weeks to the point that I had to seek hospital assistance
Initially Jackie managed to get nursing care for one night a week and some ad hoc visits. Amber-May continued to suffer hemiplegic migraines and more strokes-like episodes which caused further brain damage.
“I had several meetings with the CCG asking for help like more nursing care. I had two other children that needed to be cared for as well and they deserved some sort of life too. It was so hard. “I need to give my other children a life. Someone always had to be with Amber-May.”
Jackie was getting less than four hours sleep a night. One day she was driving with the children and Amber May started to choke. “I had to try and pull in immediately to suction her, a van went into a hedge a few cars behind me as they could not stop in time, thankfully a passing tractor pulled them out but another driver shouted expletives and said she hoped the child really was ill.”
Despite explaining to the CCG that she needed a healthcare professional in the back of the car whilst driving to eliminate these issues, it was not seen as a need.
“I took my other two other girls away on holiday while Amber-May was in respite but I was called back on the first day and another adult had to take my place and go on holiday with the girls. I only managed to see my other two daughters four times during the six week school holidays one summer as I spent it in hospital with Amber-May.”
Amber May suffered a bowel perforation in 2020 and another in February 2022. She spent more time in hospital with Jackie by her side as Amber-May needed 1:1 care and the nursing staff were very stretched. Jackie went for 10 days without being able to even take a shower.
I only managed to see my other two daughters four times during the six week school holidays one summer as I spent it in hospital with Amber-May.
“The CCG rule is that once you are in hospital your nurse can’t go into hospital with you because that would be double funding. Despite the fact that Amber-May needed 30 medicines a day all at carefully timed intervals. She was a complex nursing case putting pressure on the already stretched nursing teams. So I had to do as much as possible, change her bedding when she was sick, watch for seizures and desaturations. I washed her clothes in the sink and hung them out over the hoist to dry. If I wanted to go to the loo I had to ask an overstretched nurse to watch Amber-May.”
Every time she went back into hospital Jackie would lose the nurse package of care at home.
Constant judgement calls
Jackie has medical issues herself, often which have had to be second to the needs of Amber-May and her family.
“I was constantly making judgement calls when to take Amber-May into hospital. If too soon we would be sent away and if too late then I would be in trouble regarding safeguarding. Even trying to get support to take my other children to medical or dental appointments was so problematic as the CCG never responded quickly to my request for a nurse to look after Amber-May so I could take them.”
I had to do as much as possible. . .If I wanted to go to the loo I had to ask an overstretched nurse to watch Amber-May.
The Continuing Health Care nurses and Jackie often called Evelina’s palliative care team through the night for support and complex care advice.
“It was suggested that Amber-May could be entitled to residential care but the closest place would have been a four hour drive from our home which just wasn’t workable.”
Amber-May died on 24 March 2022.
The hospital delivered excellent palliative care and looked after Amber-May with the utmost respect in her last month of her short life.
“I know it is possible for your child to have a good death with the right care.”
Every family’s right
Jackie has been supporting our most recent campaign:
“I am very thankful for the excellent palliative care Amber-May received at the end of her life and I want every parent going through this most difficult of times to get as much support as they need and that they are entitled to.”
We believe that every child and their family should have the right to access high-quality children’s palliative and end of life care at home – if that is what the family chooses.
Currently, only one in five local areas in England provide families with access to 24/7 palliative and end of life care.
We are calling on the UK government to urgently plug the £300 million funding gap in England to ensure children and families can access palliative and end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants.