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Ted’s story: “The time at home meant we got to make such amazing memories with Ted”

Ted was born three months prematurely in May 2017 weighing just 1lb 9.5oz. He wasn’t breathing when he was born and was taken straight to the neonatal intensive care unit (NICU). Ted had chronic lung disease and spent the next four months in NICU and was finally discharged home on permanent oxygen in September 2017.

At nearly eight months old, following another hospital admission, Ted was diagnosed with a rare, incurable heart condition called pulmonary vein stenosis. This causes veins going to the heart to narrow and eventually close.

“The team attended meetings with us to help assure the hospital professionals that his needs could be met at home”

Ted’s mum, Natalie

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“They developed an advance care plan with us and ensured that we were able to do everything we needed to do for Ted at home. This meant that we got to spend as much time as possible at home as a family between hospital stays. This time at home meant we got to make such amazing memories with Ted, we took him on so many days out and weekends away, memories we wouldn’t have been able to make inside a hospital room. Being able to do that made all the difference in the world, it totally changed the quality of Ted’s life and meant we could make the most of the short precious time we got to spend with him. When we got home, the children’s palliative care team came round regularly to check on Ted and to support us.”

Despite numerous heart surgeries, spells in hospital and initial signs of recovery, Ted’s condition deteriorated. As it became clearer that he was nearing the end of his life, the children’s palliative care team helped Natalie and Kev to meet Ted’s complex palliative care needs at home.

“When we decided it was time for Ted to be at home following his final admission to hospital” says Natalie, “we informed the children’s palliative care and within eight hours they had set up the equipment Ted needed at home including a high flow machine to help him breath, had the medication he required ordered and prescribed and we were taken home by ambulance and met by the team and all our family.”

When the family needed the palliative team, they were there.

“We arrived home on a Thursday evening and the children’s palliative care team were there until around midnight that night to support us.”

“We had a wonderful couple of nights with lots of visitors, one being a pony which Ted loved and had a sit on. On the Saturday morning we could see that we didn’t have long left with Ted so we called the team to start making arrangements. They came straight out to us and sorted out any medication that we would need to manage Ted’s symptoms and explained to us what would happen. They then left to give us time as a family and to say our goodbyes. We called them back at 10pm that night to be with us at the end. Ted passed away in our arms at home in June 2018, 16 days after his 1st birthday.

In the following days, the children’s palliative care team helped Natalie and Kev in their grief for Ted as they made plans for his funeral. The team also arranged a cold cot for Ted so that the family could stay at home together for a couple of days and then arrangements were made for them to stay at their local children’s hospice, Zoe’s Place in Coventry. They then spent there last night at home together before the funeral. The team showed there support further by attending Ted’s funeral.

“We always knew that we wanted to say our goodbyes to Ted at home where he belonged and not in a hospital room, this was very important to us and the team and the hospital were aware of this. We would however never have managed to get Ted home with the additional support he required if it wasn’t for the amazing care and extra support we received from the team. This extra time at home was amazing and something we will be forever grateful for. We made such special memories at home that weekend and words cannot describe how much it meant to us and what a difference it made for us all. It really helped us at the hardest time of our lives and it gave us the privacy we all deserve.”

Other families like Ted’s need your help, so every child can get 24/7 end of life care in England.

Worryingly, our new report highlights that not every family is getting the support they need. Our interactive online maps show that the extent to which seriously ill children and their families can access services which achieve these standards is very patchy and depends on where they live.

We are particularly concerned about children and families’ access to end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants who have the knowledge and experience to meet their often complex needs.

We need your to help. Use our maps to find out the situation in your area. Sign our open letter to the government to ask them to take action.

Family stories