Olly is wheelchair bound, non-verbal and mainly tube fed. Regardless of everything that Olly is going through with his medical conditions, Amy shares that he is “the happiest child you’ll probably ever meet. He is always smiling; he is just a blessing.”
Amy explains that she had a normal pregnancy, and no abnormalities were found during her routine pregnancy scans, however when Olly was 4 months old, he developed bronchitis and was taken to hospital as he needed oxygen.
“The consultant examined him and was shaking toys in front of Oliver’s face and as a first-time mum I was incredibly confused as to why they were doing that to my baby who couldn’t breathe. The consultant explained to me that due to the space between his eyebrows and the way that his eyes are tracking objects, he thought that Oliver had a brain condition, which came as a huge shock as
nothing had been picked up on this previously.”
The family was soon referred to Little Bridge House following a conversation with their consultant in Torbay,
“When Olly was first diagnosed with Pitt Hopkins syndrome, he was having issues with his feeding and he spent a lot of time in hospital, he lost a lot of weight and I spoke to our consultant in Torbay to ask if Olly’s medical conditions would affect his
life-expectancy and unfortunately he said that it would and from there we were referred to Little Bridge House.”
The family now have regular hospice stays and hospice days at the Little Bridge House children’s hospice in Fremington, Barnstaple, and travel 1 1/2hrs from their home in Newton Abbot. Amy recalls their very first visit and that the hospice was not at all what she expected it to be:
“Rosie is our Care Team contact at the hospice and she had tried to contact me numerous times, but I kept avoiding the call as the word hospice just scared me and I just wasn’t ready to face it but she finally managed to make contact and persuaded me to come up for a day visit and it was nothing like I expected at all. We were shown around, and Olly had a play in the
sensory room, Harry went into the soft play, and it was just a really nice day! We had our first actual hospice stay quite soon
after that and it was lovely.”
Now 2 years on from their initial stay, Amy says that the Care Team at Little Bridge House are the only people she will trust with Olly and allow herself to really relax and let go.
Having the experienced CHSW Nurses at the hospice allows Amy to have peace of mind that Olly’s medical needs are being met, but Amy shares that the hospice is so much more than that;
When Olly stays, he loves his Music Therapy sessions with Ceridwen, he is really engaged when he does those sessions and has a good
connection with her. He also loves the sensory room and the jacuzzi but more than the facilities, I think Olly just loves the attention he gets.
Oliver's brother, Harry, also loves going to Little Bridge House, especially playing cafes in the playhouse and spending time with the Sibling Support Team.
Despite being a typical boy and loving rough and tumble, Harry has made a real connection with Sally, one of the Sibling Support Workers.
“Last time we went he made binoculars with Sally, and they are one of his prized possessions now. He follows her around like a little puppy and adores her which is really nice as he doesn’t really have that connection with anyone else. As a family we all love playing Bingo with Sally, but I’m quite competitive unfortunately!”
When families stay at Little Bridge House, the Care Team theme the child’s bedroom with their favourite characters to make it as homely as possible and for Olly, Thomas the Tank Engine,
features a lot:
“When we come to stay his room is decorated with his favourite Thomas The Tank Engine bedding and sometimes, they even have the TV on with Thomas The Tank Engine cartoon on ready for him. He absolutely loves it and if he had his own way, he would sit and watch Thomas The Tank at home on repeat all day, every day!”
For Amy, her favourite thing to do during their hospice stays is to spend quality time with her boys doing the activities that they enjoy, having some quiet time and letting the Care Team take the lead on planning the day so that she can just relax and take a break from the daily worries about Olly’s medical needs.
“Sometimes I’ll go shopping or head out for a walk but sometimes I just like to sit in silence and take a moment to feel calm and not stress about Olly’s medical care for a few days as I trust the team at Little Bridge House so much.”
This also means that Amy can spend some one on one time with Oliver’s brother Harry; “In daily life at home a lot of my time is
focused on Olly’s medical needs which means Harry has to often wait to get my full attention so it’s nice to spend some quality time with Harry.” Although Amy admits that she doesn’t like to leave Olly out of family days out as she would miss him;
“I always want to include Olly in everything we do on our visits as, although our family is a little bit different, it’s our norm.”
Families that are supported by CHSW often share that they have made lasting friendships with others they have met during their stays, who understand what life is like having a medically
complex child and this is no exception for Amy.
“It’s really nice to come to Little Bridge House and speak to other families who are in a similar situation. I’ve got quite friendly now with some of the mums I have met during stays and have some days out planned with them.
It’s also really nice to see Harry build relationships with siblings who have an idea of what he is going through because I think that will be really important as he gets older. Until we had Olly, I didn’t know anyone else who had a child with additional needs so I think it will be really good for Harry to have this support
network. That’s one of the main reasons we came in the first place, probably more for Harry than Olly, which sounds a bit crazy, but it’s just really nice that that support is out there.”
We are really grateful for Little Bridge House. Without having the hospice in our lives, I don’t think that we would have any proper respite.