Thomas’s story

I have spent so many nights asking why. Why did this have to happen to my beautiful boy, and why did it have to happen to me? But I have come to realise that I am the mum Thomas chose when he was coming into this life. All this was meant to be.

I can say that now, but it has taken a while to get to a place of acceptance. It’s also taken a lot of support, and Chestnut Tree House has been a big part of that. Thomas is two and a half now, but he has the developmental age of a newborn. He cannot smile or hold his head up, he doesn’t walk, talk or play. Because he can’t communicate with us, caring for him is often a process of elimination: is he hungry, does he need to sleep, is he in pain?

We don’t really know how much Thomas understands, but we know he recognises sounds and voices. He loves to be at home, with his big, busy family – me, my husband Alexsandro, seven-year-old Beatriz, and nine-month-old Elizabeth. For everything else, we try to gauge his reactions. If he moves his eyes or mouth, if he tries to touch something again, we are excited because we may have found something he enjoys.

If he hears Latin music, he knows he’s at home with Mum. On a sunny day, we’ll lie on a blanket outside so he can feel the sun on his face and sometimes I tell him stories about the clouds. If he doesn’t understand, at least he can hear my voice. And who knows? Maybe he understands a lot more than we think.

Finding out our new baby needed extra support

I had an easy pregnancy with Thomas, but when it came time for the birth, things didn’t go as smoothly. I’d dreamed of having a natural labour, but my due date came and went, so I went to the hospital to be induced. As soon as the midwives checked us over, they realised that something was wrong with Thomas, so I had an emergency C-section. Fortunately, we had our golden hour – the first skin-to-skin contact between mother and baby – but the following day Thomas had a seizure while my husband was holding him and that is when our nightmare began. Eventually, we discovered that Thomas had suffered a perinatal stroke and there was substantial damage to his brain.

I’m from Uruguay and while I’m fluent in English, the stress, lack of sleep and unfamiliar medical terms meant I struggled at times to understand what the doctors were saying. I was just crying, crying all the time.

Navigating the worst of times

Thomas’ little body went through so much. He developed hydrocephalus – fluid on the brain – and because of the pressure, he had to have a shunt to drain some of the fluid. He developed meningitis and ventriculitis – potentially deadly brain infections. At that point, doctors told us we had to get through the next 24 hours and see what happened. It was all so hard, because we also had Beatriz, who was five. She was used to being with me all the time, and suddenly I was spending all week in the hospital in London, while her dad cared for her at home in Worthing.

Eventually, Thomas was well enough to be transferred to Worthing Hospital and then, after six months, we were able to take him home. At the time, we didn’t know how severe and long-lasting the damage to his brain would be. A few months ago, our neurologists told me that almost half of his cerebrum (the top half of the brain) is damaged.

Looking to the future with Chestnut by our side

I have regular meetings with the palliative team at Chestnut because unfortunately, the damage to Thomas’ brain means his doctors don’t expect him to have a long life. Of course, no-one really knows, but it is likely that his breathing will deteriorate because he doesn’t have the muscles to support his own weight. We also work closely with NHS physiotherapy and speech and language teams, as well as nutritionists, because he needs to put on weight, but at the same time, not too much. We must control pretty much every aspect of his life.

When you have a child like Thomas, you grieve for all the things he won’t be able to do. All through the pregnancy and even before that, I’d been dreaming of watching my son run and play with his friends, then growing up and going to college. It’s taken time to come to terms with the new reality.

Chestnut has been an important part of that journey. We were first referred when Thomas was just a baby, and I admit I wondered how a hospice could help when he was so little. I felt like because I’m his mum, I should be the one to look after him.

In safe hands

I feel guilty admitting it, but the first time I left him here gave me such a rest. He had a beautiful room overlooking the garden, and I knew that he had the right medical team to care for him.

For me, the hardest part is doing his meds – he has six medications every morning, and six at night. It’s a relief to me knowing someone else is doing it.

A lot of the nurses here love him and give him cuddles, which makes me very happy. The last time that I brought him here, I left him at the door and two nurses came over to him, all smiles, saying “Thomas is here!” I told him, “You’re such a lucky boy!”

Support where we need it

We also have a monthly visit from a nurse at home, which gives me time to go to a doctor’s appointment, or even just to have a rest. Sometimes, my house is not perfect – it’s hard keeping on top of things like laundry. One time, I went to take a nap, and when I came downstairs, I discovered the lovely nurse had folded all the clean clothes as well as looking after Thomas.

I love seeing pictures of what he gets up to at the House. He spends time in the sensory room and the swimming pool. He enjoys nature in the gardens and the Woodland Walk. There’s no better place for Thomas to be, except with me – but when he’s here, it gives me time to rest and be there for my other children.

Beatriz, my eldest, loves it here too. There are so many things for her to do because they have a lot of activities for siblings, and she has made a lot of friends. Sometimes we have a family day here and if someone is free to look after Thomas, I’ll take her off for a walk in the woods or do arts and crafts with her.

It’s nice for her to have some one-on-one time with me, because she knows that Thomas is special and she accepts that he takes priority. She says, “We love Thomas, just the way he is.” And that’s true for all of us. He’s our precious “Gordo”, as we call him, or sometimes “Gordito” – they’re Spanish endearments for a beloved boy – and we all just want him to be happy.

Making memories together with Chestnut Tree House

For the moment, we’re trying to build all the memories we can. We take him places that offer new sensory experiences – so even if he can’t see, he will catch the scent of a barbecue, smell herbs in the garden, stroke an animal or feel the grass on his skin.

There’s no point staying at home crying – I already did that. He didn’t choose for this to happen and neither did I, but life happened, and we can’t change it now. So, we have two options. I can stay in bed, curse myself and everything around me, or accept our situation and resolve to make the best of it.

Bringing him to Chestnut, the experiences he has here and the support for all the family, helps us live the best life we can.