After Maisie died just before she turned 6 months old, Little Harbour became a safe haven for Hannah and her family to remember their daughter.
When baby Maisie was born in 2018, Hannah and Ben from Tresillian, Cornwall, were overjoyed at the arrival of their daughter. Their son, Lowen, was delighted to meet his baby sister.
After 10 normal days, following a normal pregnancy and birth, Hannah noticed her daughter appeared to be breathing rapidly.
A trip to the doctors suggested a simple infection, but Maisie was recommended to the hospital, where results revealed narrowing of the aorta in her heart. In some cases, this condition isn’t always a major area of concern. However, as Maisie’s condition had been found quite late, it was defined as medically serious.
She was rushed to Bristol Children’s Hospital and was operated on in just a matter of days, which proved a complicated process as little Maisie was still fighting numerous infections.
Hannah shared the unsettling start to Maisie’s medical journey: “If you’ve got a heart condition, you can be susceptible to different infections because your body just isn’t working correctly.
“She was operated on, and it seemed to be all sorted.
We thought, that was the worst thing ever, thank goodness that is all done.
The family returned to Cornwall and Maisie began having routine follow up appointments for her heart condition.
At one of the appointments, the doctor revealed his concerns about the thickness of Maisie’s heart wall, due to the structural abnormality, and suggested the family make another journey to Bristol for further investigation.
“It was all quite strange”, Hannah said.
“We weren’t really given any information, they just said she needs more tests, and we said okay.
“We were quite ignorant to what was going on, but we really hoped that whatever it was could be sorted out.”
_2.png "Maisie and her family")
This led to more rounds of testing for baby Maisie, with doctors struggling to pinpoint exactly what was wrong with Maisie. It was mentioned that it could potentially be a metabolic condition which pushed Ben and Hannah into further uncertainty.
Hannah fondly remembers a doctor in Bristol that wasn’t afraid to talk candidly with the family during this time of uncertainty.
“She told us in a strange way that she was worried about Maisie and told us straight up that she wouldn’t be able to have a heart transplant due to her metabolic condition.
I remember Ben asking her the question, how long do you think her heart could cope? And she said a year.
“It wasn’t one of those situations where they take you into a special room with tissues and they tell you what’s going to happen. She knew it wasn’t likely it was going to work out for Maisie.
“Ever since, I’ve met people that have been told that their baby was only going to last 6 months, and they’re still here 10 years later, so I do understand that it is a very tricky situation for some doctors to deliver that kind of information. It did really help us, her telling us that.”
As the news about Maisie was sinking in they still had their son Lowen to look after too; “Lowen didn’t have a clue what was going on, he was with us at the time, and he just kept pulling me to the playroom to play with dinosaur puzzles; it was all so surreal.”
Following their return to Cornwall Hannah and Ben told their friends and family the news; “They were in utter disbelief. She looked really healthy. It was a confusing time for everyone.
“Sometimes I thought I should be more positive that she was going to be fine, and then on the other hand I knew we had to prepare ourselves for the worst."
The family decided to come up with a bucket list of lovely things to do with Maisie.
“It really helped us to have a focus”, Hannah said.
We wanted to do lots of positive things together, so after she passed away it made us feel like she’d had a really full life.
Maisie was taken to a festival, and the family had a multitude of mini breaks to hotels. They took her swimming, and had picnics on Tregonning Hill, overlooking St Michael’s Mount. This special place is now the home to Maisie’s memorial bench, which the family visit regularly. Not long before Maisie died, they went to Shropshire to visit Hannah’s parents and friends.
“While we were in Shropshire, I started to realise she wasn’t doing very well.”
“Her hands and her feet had started to go a bit blue, which was a sign of her heart distress.
“We took her in and out of hospital, as I just knew she wasn’t well at all. It was a very difficult time, I didn’t want to be in hospital, I wanted as little of her life to be in hospital as possible.”
At an appointment a matter of weeks before Maisie died, consultants revealed that Maisie had mitochondrial disease, a serious illness. Despite Maisie presenting so well, Hannah reached out to Little Harbour to make a referral.
Hannah explained how she would’ve loved to have used the hospice while Maisie was alive, but because her death happened so quickly they were still in the middle of the referral process.
The family started to use Little Harbour following Maisie’s death in 2018, when she was just shy of 6 months old.
“I don’t know how they [Little Harbour] found out, but they must have been contacted regarding Maisie’s death, because the next day we were contacted and asked if we needed help. Sam, the Head of Care came over to visit us. The team helped us with any questions and helped us explain things to Lowen.”
Little Harbour quickly became a support system for the family. Being at the hospice meant Lowen could play safely and happily while Hannah and Ben discussed Maisie’s funeral arrangements. They even spent a special day decorating her coffin next to the memory tree in the Karensa Room, and members of staff came to the funeral.
Hannah told us what Little Harbour now means to her and her family: “Lowen loves it, he is always asking to go.
“Theo, our new baby, comes with us too, and I go to a lot of the mum's groups.
It’s really nice to have somewhere to go, to be surrounded by people that get it.
Both Hannah and Ben have been actively fundraising since Maisie’s death. They have raised money for The Lily Foundation, a UK based charity dedicated to fighting mitochondrial disease.
Ben ran the 2023 London Marathon for Children’s Hospice South West (CHSW), which happened to fall on his 40th Birthday. The couple also held a Charity Cornish Craft Beer Tasting Evening at The Alverton Hotel, and collectively they have now raised over £30,000 for CHSW. They post fundraising updates on their Team Amazing Maisie Facebook page.
Hannah said: “Despite the year's passing, we are still so very proud of Maisie and she is so very loved and missed by us and all of the wider family, and this will forever be true. The family spoke at the 2023 Moonlight Memory Walk;
“The Moonlight Memory Walk marked almost 5 years since Maisie’s death and it was an incredible way to remember her. We have met so many wonderful families through Little Harbour who have been through so much and we were truly honoured to be a part of such a special night.”