Toby L’s story

‘Helen & Douglas House gave us the chance to become active parents again, which is something that we had not thought possible during our time in the hospital. We made many happy memories at Helen & Douglas House and will be eternally grateful to the team there for making a truly devastating time just a little easier.’

Toby was born to first-time parents Zoë and Jake from Abingdon in January 2020. After three months with their happy and healthy baby, Toby suddenly became unwell. After a visit to A&E, where only mum Zoë was allowed in due to Covid restrictions, they were admitted to the Paediatric Intensive Care Unit at the John Radcliffe hospital. After five weeks, they were saying goodbye to their little baby boy. Toby’s Mum, Zoë shares their story:

Admission to hospital

It all happened so quickly, said Zoë. One day Toby was a healthy baby, and the next day something wasn’t right. It was May 2020 and we were in the middle of the Covid Lockdown. We were advised to go to the hospital. Once there, I was all alone as Jake (Toby’s dad) was not allowed in with me. It was all very confusing. There was talk of seizures, and that Toby had suffered from a stroke and he needed an MRI. I couldn’t keep up with what I was being told.

On Friday 1st May, after being admitted to A&E, Toby was moved to the children’s neurological and surgical ward (which were combined due to Covid). He was sent for an MRI, which is when they found out he had experienced a metabolic stroke. The next morning, we were told the devasting news that Toby would die.

Toby continued to have seizures and in the early evening of Saturday, Toby was transferred to PICU. This was when Jake was finally allowed to stay with us, so we could all be together as I was not coping well on my own. Overnight, Toby’s seizures continued and became difficult to get under control, so he was intubated in the early hours of Sunday. Over the next week, tests with Toby continued, but we were still unaware of his condition. This was when Helen & Douglas House children’s hospice was mentioned as a place we could go with Toby.

Introducing Helen & Douglas House

At the hospital we met Dr Hannah, Nurse Morag and Dr Emily who are part of the Helen & Douglas House Care team. We were terrified – we didn’t want to go to a hospice. Going there felt like our last bit of hope was gone. We weren’t even allowed to visit before, due to Covid restrictions, which made the experience even scarier for us. But, the next day, a decision was made to move Toby to Helen & Douglas House for end-of-life care. As soon as we arrived it was amazing, and so different to what we had expected in our mind.

On our arrival at Helen & Douglas House Toby’s condition was still unknown, and we had no idea how long he would live for. But, as his ventilator and many of the wires had been removed, we could start to cuddle and pick up our son again. In the hospital, he was connected to so many machines, that we needed a nurse to help us hold him. Helen & Douglas House enabled us to parent again. Whilst our entire world was falling apart, they gave us some normality and cared for both Toby, and us, his parents.

During Toby’s time at Helen & Douglas House, we talked with the clinical team about the prospect of bringing him home. We were trained to administer his medication, but I felt too nervous to bring him home for very long. We tried it for an afternoon but we wanted to be in the hospice where we had the support we needed. We also had no idea how long Toby would live for, and we made the decision we wanted him to die with the support of the hospice, rather than at home on our own.

Making memories with Toby

Over the next few weeks at the hospice, we would spend every day with Toby. We stayed there overnight as well for the first few days but then decided to go home each night to sleep as we would be more rested. We came in every day to be with Toby and had the full support of the care team. We also had nurse Lucy explain to us what would happen when Toby died, and what we would need to do.

Unfortunately, after his initial strokes and seizures, Toby was not the same baby he had been. Over the weeks he gradually became weaker and didn’t react much to external stimuli. Despite this, we spent many days together in the calm peaceful surroundings of the Helen & Douglas House Garden with him. The hospice helped us make handprints and other memory keepsakes and let our family visit to say their goodbyes to Toby.

After his death staff were unable to attend his funeral due to Covid restrictions, but to mark the occasion they did a balloon release from the hospice garden in his memory.  

After Toby’s death

When Toby died, he spent a short time in the Little Room at Helen & Douglas House. This is a specially cooled room for the children to lay at rest after their death. Having a few days to say goodbye to a child is a comfort for many families, but I found it hard to see him in there. However, it did give other family members the chance to visit and say goodbye.

The hospice staff helped us with his funeral arrangements. They also went above and beyond in their support, for example, they offered to phone the Nursey that Toby had been booked in to, to explain that he had died. I found this too difficult to do.

After Toby died, we had further support from the hospice to deal with our grief, with sessions with their Clinical Psychologist, Kate Green. We have also attended Bereaved Parent support groups, run by the Family Support team.

‘I have lived in Abingdon all my life and you know that Helen & Douglas House is there, and you know it is a children’s hospice. But, you just don’t fully understand the amount that they do until you are unfortunate enough to be in a position when you need them. In our situation Toby died, but they are still looking after us now’.

Toby’s diagnosis

It took around four weeks for Toby’s test results to come back. He was finally diagnosed with an incredibly rare, recessive genetic condition called Isolated Sulfite Oxidase Deficiency. This condition meant that his body could not fully break down sulfated amino acids. This eventually became toxic to his brain, resulting in several metabolic strokes and seizures. We didn’t know it at the time, but he would have been born with this condition.

The future

We found it difficult to tell Toby’s story at first, but we now have a little girl – a baby sister to Toby, who was born in September 2022, and feel ready to tell Toby’s story as he left a lasting impact on our lives. We had Orla with the help of IVF and genetic testing (with help from a consultant geneticist that helped to diagnose Toby) as we didn’t want our child to be born with the same genetic condition. If it had not been for Helen & Douglas House, we would not have known about this, as Dr Emily signposted us to a consultant at the JR who supports women who are pregnant following an infant death.

As a family, we will be eternally grateful to Helen & Douglas House and everyone who works there for giving Toby a place to spend his final few weeks in a safe and comfortable place, without being connected to wires. In total, Toby spent five weeks in their care before he died, with dignity, on the 13th June 2020.