Callum's mum, Sheri, shares their family story.
Twins, Callum and Oliver from Newbury in Berkshire, were born in University Hospital Southampton in May 2016. Sheri and Phil, parents to Callum, Oliver and big sister Amelia, knew as early as the boys’ 20 week scan that Callum had hypoplastic left heart syndrome and was going to require medical intervention. Sure enough, Callum required major surgery within five days of birth.
Sheri tells us how their family life was turned upside down:
“It was a surprise to learn we were having twins, but then to find out that one was unwell, you go from thinking about coping with twin boys, to thinking one of them might not even survive! I went through all sorts of emotions. We didn't buy any baby stuff, we just had one of everything because we didn’t know what the future would bring.
“After the boys were born we all had to stay in hospital for six months while Callum grew strong enough for his next operation. We were finally allowed home in November and began trying to live a normal life, albeit a normal life with twin boys, one of whom had a nasogastric tube. There were so many unknowns. We just didn't know how life would pan out.
“In October last year we were back in Southampton Hospital and were introduced to Laura Bengree, the clinical nurse specialist who works at Naomi House and the hospital. All we knew about Naomi House was what we had seen on the TV. I didn't know how it would fit into our lives. All I could think about and all I wanted was to go home. That changed when we looked around the hospices and saw the amazing facilities, the lovely swimming pool and everything else.
“We went to Naomi House for the boys' first birthday in May and it was incredible. We just sat out in the sun and had a lovely time as a family. We could relax because there were people there who knew exactly how to look after Callum. You can’t necessarily rely on that from friends and family because Callum is so complex.
“Once we were there everything slotted into place and nothing else mattered. We had been cooped up in hospital for ages and it was so nice to be out of there. We were even able to invite my Dad and some friends along.
“We came back for our first weekend stay in the middle of June and we got to go swimming. Callum absolutely loved it. It was a really, really nice weekend. It was at that point that we knew we were going home soon, and I knew we were ready because Naomi House had given us the confidence to do it.
“Since then we've been getting care at home from the Naomi House community team and regularly go to the hospices for swimming sessions. The Naomi House pool is the only place we can go swimming together. The community sessions are so helpful, they allow me to go out and get things done while Callum is looked after by someone who knows him and his condition. Having someone to talk to is important because life can be quite lonely.
“People perhaps have a misconception about hospices. I thought it was all about end of life care, but with Naomi House it’s about getting the support that you need to live your life. The step down process, from hospital to hospice to home was a huge help to us and we are so glad we did it. It showed us we could manage at home, and here we are.”