8-year-old Millie, her mother Meg, and little sister Mia (aged 4), have been supported by CHSW’s Little Bridge House for over 7 years. Millie, who has a very rare genetic syndrome, has many complex medical needs including having Hydrocephalus and has had 23 different brain surgeries in her short life. Millie has a Percutaneous Endoscopic Gastrostomy (PEG) tube for feeding and is in a wheelchair.
Millie’s mother, Meg, explains that despite a healthy pregnancy and no abnormalities showing on her scans it quickly became clear there was something wrong when Millie was born.
“Millie was born, and from that moment it was clear that something was not quite right. She had an abnormally large head, had poor muscle tone from not moving very much in the womb and really from the moment she was born we knew, and the ball started rolling from there.”
Having a child with complex medical needs means that Millie requires a lot of assistance from Meg;
Millie needs round the clock, one to one, care. She needs someone to do everything for her like washing, changing and going to the toilet as she is unable to do any of those things herself.
Meg recalls when she first heard about Children’s Hospice South West and how their family’s journey began with their nearest hospice - Little Bridge House:
“Millie was around 9 months old and had just had her 3rd or 4th surgery and I was in the Paediatrician’s office discussing Millie’s next steps and the Doctor first introduced the idea that Millie would be a good candidate for the children’s hospice. This was based on the fact that she had had a lot of life-threatening events already in that very short space of time and our journey with Little Bridge House began there.”
On their very first stay at Little Bridge House, Meg admits she didn’t know what to expect, or what a children’s hospice would be like:
“It was just really sweet; everyone was lovely and friendly. They were very excited to meet Millie. Everyone came over and made a fuss and wanted to speak to her, it was just so lovely, almost like settling into a family. It took me aback as we had been in a lot of medical situations, in and out of hospital, where, although people are nice, this was completely different. The care team wanted to cuddle Millie and talk to her, get to know her. It was just nice to see people wanting to interact like that with Millie. They see children for what they are, children, not their medical condition.”
Even though Millie has a PEG for feeding, mum Meg jokes that one of her favourite things to do at LBH is eat!'
Millie has got a PEG to enable her to eat but she will happily sit and make the biggest mess ever as she enjoys just having a try of different foods. Everyone enjoys doing this activity with her as they can see the enjoyment that Millie gets from it, even though most of it ends up on the floor. It’s a very sensory experience for her.
The sensory room with its multitude of pretty lights and bubble tubes is another favourite place Millie likes to spend her time, as well as the Narnia themed sensory garden where Aslan the Lion roars and water squirts over the heads of passers-by as they make their way along the fully accessible paths.
Millie also loves having Music Therapy sessions with Ceridwen, bashing the drums and playing on the keyboard. She really enjoys those sessions and gets a lot out of them.
Millie’s little sister Mia enjoys coming to the hospice with her big sister and mum. “When Mia first started going, she was very shy and wouldn’t go with anyone and as time has gone on her confidence has grown. Now she runs about feral! She knows where all her favourite toys are and rushes around enjoying herself. The Care Team encourage Mia to explore and play which is really nice.”
Meg shares that she felt so reassured of Millie’s care at Little Bridge House that she decided to try letting Millie have a stay at the hospice on her own for the first time very recently, which gave her a much-needed break from the round the clock care that Millie needs.
“It was lovely as I had no worries about Millie being cared for. I thought she has Nurses and people around her that care about her. It was just great; I could step away and not have to worry for a moment that there would be anything wrong. I went into the hospice the day before and did all of the checks that are needed, the Doctor had been round, everything was set up ready and so I stepped away thinking this will all be fine, and it was.”
“Usually when I go there, and Millie is off happy doing an activity with the Care Team, I take the opportunity to just go and chill somewhere. It’s nice to be a bit lazy when I’m there as I know Millie is being looked after so well.”
Meg, Millie and Mia have been coming regularly to the hospice for many years and as they live very near to the hospice are able to attend the many events that families are invited to throughout the year.
“We are really lucky as the Care Team will give me a phone call and ask if we would like to pop up for different things that are happening, which is really nice. Especially if it’s on a weekend and we haven’t necessarily got anything planned.”
I remember 1 year staying at Little Bridge House over the festive period, the decorations were up everywhere, it was so beautiful. They had lots of lovely Christmas events like visiting Santa and carol singing. As we live so close to Little Bridge House we are lucky enough to be able to come along to lots of these special events.
When the family are at home, the support continues:
“I have been very lucky with the Care Team. I was in Bristol hospital with Millie when she was really poorly, and they called me daily to check how Millie was doing and give that support. In the pandemic they came up to our doorstep and dropped things off like little Christmas gifts. They have been very helpful in lots of different ways.”
Meg has gained support in other ways from visiting the hospice through talking to other families staying and has developed new friendships with those experiencing similar situations.
It’s really nice to chat to other families that are staying and talk about our shared experiences. Every family is completely different, of course, but sometimes paths cross, there will be certain things that you’ll both just know because your child has got that same thing, and you may not be able to experience that level of understanding with other families outside of the hospice setting as they don’t have medically complex children.
“Little Bridge House really is a lovely place and although the word hospice sounds scary, actually once you start going and you get to know everyone you soon realise that it’s just a wonderful place to come.”
Little Bridge House is a place full of love and happiness and that’s the main thing for me, I just feel happy going and I know that Millie and Mia love it too.