Ada’s story

My four-year-old daughter, Ada, loves anything pink and glittery. People often say they can see us coming from a mile off because she has so many sparkly things. 

I think everybody who meets Ada falls in love with her. She’s just so sweet. She’s very affectionate, and cuddles are her favourite thing in the entire world. 

Ada with her parents Charlotte and Toby.

But Ada also has a lot of difficulties. She has a very rare genetic condition called CAD mutation resulting in global developmental delay. As a result of the damage to her brain she also has epilepsy, and she is registered blind. 

When she was diagnosed, there were only about 20 people in the whole world with her condition, and with that rarity comes a lot of uncertainty. We have never really known what the future was going to hold for her, which is why we just take everything as it comes.  

Up until the moment Ada was born, we had no indication that there was anything wrong. I had a planned C-section because of a low-lying placenta, but the doctors expected it to be very straightforward.

I didn’t get to hold her or have skin-to-skin after she was born

Initially, the doctors thought she was in shock and rushed her off to resus. After they had stabilised her, they brought her to me so I could see her, then they whisked her off to the NICU (neonatal intensive care unit). My husband, Toby, went with her, and I was left in recovery on my own, which felt very strange – I’d gone to hospital to have a baby and there I was, stuck in a bed without her. Later I was taken alone to the antenatal ward, where I was surrounded by other mums and their babies. That was very hard.

We were in NICU for 11 days and while we were there, she had several oxygen desaturations which meant she turned blue. The doctors decided to do an ultrasound of her brain. This was during Covid, and Toby and I weren’t allowed to be on the ward at the same time. So, when the consultant asked if my husband could come in, I knew instantly that there must be something very wrong. They said that they had found structural brain abnormalities and a subsequent MRI revealed about five different things wrong with her brain, all quite severe.

Charlotte holds Ada in the colourful lights of Chestnut Tree House’s sensory room

Grieving for the life we thought we’d have

We went home knowing that she was going to have special needs, but to what extent, we didn’t know. We were hopeful, but the uncertainty was quite difficult. We also had to work through a sort of grieving process as well. Ada is our first child, and for the first year of her life, we watched as the parenting journey we’d envisaged throughout the pregnancy became further and further away from the journey we were embarking on.

When Ada was about three months old, she began to have seizures. We tried so many different meds and she was in status epilepticus (prolonged seizures requiring emergency treatment) all the time. We never slept because she was having them all day and night.

Eventually, we ended up at a neurology centre in Oxford and that’s when we discovered her genetic diagnosis.  At first, we were horrified because it is a neurodegenerative condition which is often fatal without treatment. However, we consider ourselves very lucky because there is a treatment. Gradually, Ada’s seizures have waned to the extent that she is no longer on anti-epileptic medication.

The treatment can’t reverse her brain abnormalities, but hopefully her condition won’t get any worse. Nevertheless, to this day we are in a constant state of hyper-vigilance, because we’ve seen how quickly things can go wrong.

As a result of her brain abnormalities, she also has other conditions, such as cerebral palsy. She’s tube-fed, she has medicines throughout the day, and she sometimes chokes and needs suctioning. We’ve also had periods when she’s been inconsolable for 24 hours at a time because of her dystonia – a movement disorder that causes the muscles to contract painfully.

All this means we can never really relax.

Charlotte and Toby walk with Ada in the sensory garden at Chestnut Tree House

Being part of the Chestnut family

That’s why the respite care at Chestnut Tree House is so amazing. We came to Chestnut when Ada was around a year old and it is now the only place that we trust anyone else to look after her.

That’s partly because the amazing staff know her so well. Helen is our community healthcare assistant, and she visits Ada at home as well as occasionally taking her to the House for visits by herself. Because Ada doesn’t speak, not everyone understands her body language and vocalisations. When she’s content, it’s easy enough to entertain her. But when she becomes uncomfortable, people can’t always tell the happy noises from the sad. Helen does, though.

We appreciate how understanding everyone at Chestnut is of our feelings. When Ada had her first overnight stay, the nurse looking after her, Bex, knew how nervous we were. She wrote us a little note, as if it was from Ada, telling us what she’d been up to overnight.

Recently, we went for our first stay at the House in six or seven months and when we arrived, it felt like being with family that you’ve not seen for a long time. Everyone was so excited to see Ada, asking how she’d been and what she’d been up to. We went to help with bedtime one evening and one of the healthcare assistants, who wasn’t even down to look after her, was in there giving her a cuddle because she hadn’t seen her for so long. It feels like all the staff are so invested in the children, and not just the care staff – the kitchen staff are so friendly, and the cleaners work hard because they really believe in Chestnut Tree House and want to make it as nice as possible for the families.

I haven’t experienced having a typical child, but I assume when you do, you trust family to look after them. Ada’s needs are so complex that we can’t ask people to babysit so in that respect, Chestnut is like family to us.

Ada swims in the hydrotherapy pool at Chestnut Tree House with her dad Toby.

Quality time, precious moments

When you have a child with so many care needs, it’s rare that you get to spend quality time together as a couple. So, when Helen visits, we often take the opportunity to go out to dinner. We’ve also been to a couple of date nights organised by the team at Chestnut, which are so lovely because they care for the children as well. It means we can relax and enjoy a meal, knowing that she is entertained, safe and happy.

The activities team try to spread their events around geographically, and some take place around Portsmouth which is where we live. We went to an amazing sensory show at Christmas, and we were blown away by how inclusive it was.

Sometimes Helen takes Ada to events at the House if we’re busy working. One was a pyjama party where they all watched a film. Her absolute favourite, though, was being a mermaid. She loves being in the swimming pool at the House and she wore a little tail – which was pink, obviously – while someone supported her in the water and helped her swish it from side to side. It was so lovely, it looked like she was born to be a mermaid.

Because Ada’s muscles are quite tight, being in the water is very relaxing for her. For children with PMLD (profound and multiple learning disabilities), I think it can be very freeing. When they’re in the water, it might be the only time they’re not in someone’s arms or being supported by equipment. We love that for Ada, and she really enjoys it too.

Finding our tribe

For us as a family, it is also liberating being at Chestnut because we don’t feel like the odd ones out. You’ll be in a room full of feeding pumps and you think ‘These are my people.’

I feel very grateful that we were referred to Chestnut because I know the caseload is getting bigger and bigger. That is a good thing, because it means children are living longer and surviving things that they might not have survived before. But it does mean that, unfortunately, not everyone meets the criteria for hospice care. Having a child with a life-limiting condition changes your perspective and since having Ada, we’ve learned to take nothing for granted.