Loui’s story

My husband and I love nature. We especially enjoy camping in woodland, and whenever we do, the first thing we look for is an oak tree. That’s because they have come to symbolise our baby son, Loui, who died at just six weeks old.

Afterwards, I really struggled with my grief. But with the support of Chestnut Tree House, I have found the strength to share my story, and that has helped a lot. Baby and child loss is unlike any other bereavement because it’s a loss that nobody expects. You will always be grieving, and you will never get over that feeling, but I have found that there is light at the end of the tunnel.

“Owen and I were over the moon when we discovered I was pregnant.”

We were so excited to be starting a family.

We went for my first scan at Worthing Hospital at 11 weeks. That’s when the sonographer measures the fluid at the back of the baby’s neck to check for chromosomal abnormalities – and ours was a lot higher than usual. The doctors told us that this could mean our baby had Down’s syndrome, Patau’s syndrome, or Edwards’ syndrome, and I was sent for multiple blood tests. They all came back negative for those conditions but were flagged as ‘high risk’, which meant something could be wrong with the baby or the pregnancy.

After lots more tests, an MRI revealed that parts of the baby’s brain were not developing. In fact, the nerve fibres connecting the left and right hemispheres of the brain were completely absent.

The neurologist at the hospital hadn’t seen anything like this before. From what we could find out, children with an underdeveloped corpus callosum might have difficulties with hand-eye coordination or ADHD, or they may never walk, talk or hear.

“At 33 weeks pregnant, I went into spontaneous labour.”

I had an emergency c-section and Loui was whisked away and put on a ventilator. We were told that he needed extra support at Southampton Hospital, which has a neo-natal intensive care unit.

We ended up spending six weeks in Southampton. When Loui was four weeks old, our genetic testing results came in and we had a diagnosis: Loui had an extremely rare genetic condition called ATG7 ataxia. It is so rare that there were only 12 cases on record and each one was very different. One thing we did know for sure was that the condition is degenerative, so things weren’t ever going to get better.

Although he was very poorly, Loui began to open his eyes and kick his legs in his cot. He enjoyed it when I rubbed cream into his hands and feet and loved having his head stroked. It was a rubbish situation, but we had the best time being his parents – he gave us so much joy.

“At five weeks old, Loui’s condition deteriorated.”

The medication was no longer keeping his seizures under control. At this point we were offered a space at Chestnut Tree House, but we felt it was too risky moving him. We were given a private room at the hospital, just us and Loui, where we spent his final days.

He passed away in my arms on 11 November, and it was around Christmastime that I started coming to Chestnut. Having that support over Christmas and going into the New Year was so helpful because it was very hard coming back to an empty house.

“I was nervous coming to Chestnut, but it is wonderful seeing the children having fun.”

It’s amazing that the team can give them those joyful moments. I’ve found Erika, my counsellor at Chestnut, so helpful and now Owen is having counselling too. He’s been amazing at supporting us as a family during the hardest time of our lives and I’m so thankful. I’m glad he’s getting some support for himself too.

I’m keen to meet more of the other parents here. We have our anniversary coming up and we’re going to celebrate by coming to a quiz night here.

We have also found a lot of comfort in the memorial garden at Chestnut, which has a water feature commemorating all the children who have died. There’s a pebble in the fountain with Loui’s name and we go there quite often. We’ve been working with the fundraising team to provide lights and a heater in the gazebo, so families can use the space all year round.

I want to say thank you to the staff at Chestnut for always having open arms when we need it and for offering all kinds of support – from the lovely chats with the receptionist to the events, remembrance days and cups of tea.

“After Loui died, I needed a fresh start.”

I got a new job as a learning support assistant at a local school. Everyone was lovely, but I felt that they were walking on eggshells. Some of them had young children or grandchildren and I felt like when I walked into the room and they were talking about their kids, they stopped.

I hated that, so I spoke to my line manager and my Chestnut counsellor and decided to call a meeting. I wrote three pages about Loui – from the first scan until his last day – and read it out in the staff room. I wanted people to know that, yes, losing a baby is awful. But I am still me. I still like to laugh. I still like to stuff my face with chocolate.

I wanted people to know that they can talk to me about their children. I think in their minds, I was ‘Poor Zoe’, and that’s not me.  I’m Poor Zoe when it’s Loui’s birthday or his anniversary, but the rest of the year I’m fine.

“The support I’ve got has been so uplifting.”

I would encourage anyone in a similar position to be upfront about their experiences. It was scary and difficult, but also very comforting to look around the room and see all those people crying with me.

I can only speak for myself and what worked for me, but I found grief was like a downward spiral. You’re in this little cocoon and it’s so hard to get out, but you just need to do it. You need to push yourself to get out there. There are so many support groups out there, and I found a lot of comfort online.

“What really helped us was being in nature.”

I struggled – really, really struggled for ages – to get out of my home. Then I thought, you know what? If I never leave, I’m never going to leave. What really helped us was being in nature. When Loui was in the hospital, a nurse shared the saying “From small acorns grow mighty oaks,” and that’s always stuck with us. That’s why everywhere we go, we try to find an oak tree to feel close to him. Loui was a little acorn here on Earth, but he’s a tall oak tree in Heaven.

If we hadn’t had Chestnut’s support, we would have found everything so much harder. You need to talk to people who understand and lift you up.

If I hadn’t had that support, I might have stayed in my house forever.

We have learnt so much from having Loui in our lives. He made us parents and also neurological scientists (part-time). He will always be our brave soldier, and we will be forever proud of our boy.

Will you be here for us?

For the families that use Chestnut Tree House, our services are absolutely vital.

But sadly, hospices nationwide are in a funding crisis, and we are not immune to this. The cost of providing all of Chestnut Tree House’s care services is almost £6 million a year, with only 21% of this coming from government funding. Between rising costs and growing demand for our services, we are currently running at a loss.

Sussex has a high proportion of children and young people with life-limiting conditions and there are more families we want to support. Instead, we’re having to make tough decisions about what services we can provide in the future. 

We are here for families like Loui’s – this Christmas, and for as long as they need us. Now we’re asking: will you be there for us?