Zac’s story

Excited to welcome a new addition to their family, the couple took their two boys, Logan and Kaiden, with them to find out if they were going to have a little brother or sister.

“The boys were so excited for the scan, and we remember the midwife saying to us that he was going to be a little boy,” says Dad, Adam. “But, would we mind if someone took Logan and Kaiden outside whilst they had a chat with us.

“So that’s what they did, and we had no idea what to expect,” says Mum, Dawn. “But they took the boys outside, and that was when they told us that the scan was showing that Zac had Agenesis of the Corpus Callosum” – a brain abnormality where there is a complete or partial absence of the band of nerve fibres that joins the two parts of the brain together.

The next day, the family were rushed up to St George’s Hospital in London, where they saw a specialist who confirmed that Zac had Agenesis of the Corpus Callosum, but that was not the main concern. “They told us that Zac also had Semilobar Holoprosencephaly,” says Adam. “An abnormality of brain development in which the brain doesn’t properly divide into the right and left hemispheres, resulting in severe complex needs.”

“They told us that Zac was a good case for termination and that he only had a 10% chance of surviving birth,” says Dawn. The couple quickly turned down the option of termination. “We knew there and then that we’d let nature take its course and if the worst did happen, we’d be prepared, and if not then we’d just see how things go.”

The family then began the process of coming to terms with the fact that their little boy might not survive birth. “Our midwife asked if they could refer us to Chestnut Tree House children’s hospice. We said yes, not really knowing anything about them,” says Adam.

Making time for each other

As well as community visits, the family also visit Chestnut Tree House for respite care. “We all stay together at Chestnut Tree House, it’s like a little holiday for us where we can have precious family time. Zac is so happy to visit the House, when we drive there he knows where he is going and you can see he just gets so excited, he’s so happy when he is there. Chestnut Tree House gives Zac so many opportunities – the sensory room, the outdoor space, the boys can even swim together, for example. I just love watching them all splash around in the pool,” says Dawn.

“Because of Zac’s complex needs the other two boys don’t always get as much attention from us, so when Zac is at Chestnut Tree House sometimes we go out for the day, it’s lovely to have some quality time with them.”

One of the family’s favourite things to do at Chestnut Tree House is to visit for the activity days. “We’ve met amazing animals, a bubble-pop man, been to a medieval day, made some furry friends – Zac loves it, the boys love it, and we just love watching them all make amazing memories together.

When asked what life would be like without Chestnut Tree House, Dawn said “I wouldn’t even want to think about it. Chestnut Tree House has been life-changing in so many ways, from the respite, the support and the counselling, they are always there for us. Our lives would be very, very different without Chestnut Tree House.”

Please note: Zac’s story was originally published in 2020, and updated in 2023 with more more recent pictures of him and his family – attending some of our special activities days at Chestnut Tree House.