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In 2016 Adam and Dawn from Durrington, West Sussex were on their way to their 20-week scan to find out the gender of their baby. Excited to welcome a new addition to their family of four, the couple took their two boys, Logan, 4-year-old and Kaiden, 3-year-old 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.
They received a call from a Chestnut Tree House nurse, “Mel phoned us and told us about the services and she invited us to into the House. We went with Logan and Kaiden so that they were familiar with the House if Zac didn’t survive birth and if we had to use their end-of-life services” says Dawn. “It was nice to have Mel there throughout the pregnancy, she came with us to hospital appointments, explained our options, and was extra support.
“You hear the word hospice and you get frightened; you think of a sad and gloomy hospital setting. But when we visited at 24 weeks pregnant, it instantly felt like a home away from home, it was amazing. We stayed for dinner, had a swim with the boys, it is such an amazing place.”
On Wednesday 9 November 2016 Zac was born breathing, happy and healthy. “They did a CT scan when he was born and confirmed his diagnosis. Ever since then we have just taken everything step-by-step, no one knows enough about Zac’s condition to plan anything, we have to treat every day like it’s his last.”
Since Zac was born, the family has continued to receive support from Chestnut Tree House. “When Zac was about six months old, we had our first community visit from Chestnut Tree House. Zac loves his community visits, he gets up to all sorts! They recently went down the beach and went pebble picking. It’s our only chance to relax and not to worry, sometimes we go out to the cinema, or for dinner – it’s the only time Adam and I can eat together,” says Dawn.
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.
“Being part of Chestnut Tree House is like having a big family, the moment you walk in those doors all of the stress is lifted from your shoulders,” says Dawn.
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.”Read more family stories