Matilda's story helps spreads awareness of children's hospice


May 12, 2021

A two-year-old girl and her parents are sharing their heart-warming story to help raise awareness and funds for local children’s hospices and to thank them for their help during the pandemic.

Hope House Children’s Hospices - Tŷ Gobaith in Conwy and Hope House in Oswestry - have strived to keep all of their services running over the past year, providing crisis and end of life care, respite care and counselling for seriously ill children and their families who rely on them, even more so during lockdown.

Pete and Michelle Hughes, and their little daughter Matilda, turned to Tŷ Gobaith for help right at the start of the first national lockdown. Their story is now being shared in the charity’s newsletter, and on its website and social media channels as part of the ‘Matilda’s Story Appeal’.

The couple, who live in Penrhyn Bay, Llandudno, were overjoyed when they discovered that they were having a baby after their first round of IVF treatment. But within weeks of their precious daughter’s birth they found themselves on a roller coaster of hospital tests and operations that they could not have dreamt of.

Matilda was born in spring 2019, after a long and traumatic labour for Michelle. Their baby daughter did seem jittery and jumpy and would wake suddenly in the night with her legs reaching skyward but, as first-time parents, Michelle and Pete weren’t sure whether that was what new babies did. Michelle asked her sisters and her mum for advice, but they hadn’t experienced anything like this with their children.

“On one particular day, we managed to video Matilda in one of the episodes and her breathing wasn’t right afterwards. I instantly called my mum for advice and she came straight over,” says Michelle.

“Mum saw her and said we needed to call an ambulance. We were taken to A&E where Matilda had more ‘episodes’. Things moved quite quickly after that. We now know that what Matilda was experiencing were clusters of seizures.”

Matilda underwent a series of tests while in hospital – a lumbar puncture, CT and MRI scans and an EEG to monitor brain activity. When she was just four weeks old Michelle and Pete were given a devastating diagnosis.

“The consultant told us that Matilda had a neuronal migration disorder which meant her brain hadn’t developed properly during pregnancy. We were trying to make head or tail of what we were told. I couldn’t speak. I just needed to let it sink in,” says Michelle.

Pete agrees: “We were just raw. We had just found out that our daughter would have learning difficulties and seizures and might never walk or talk. They had given us the worst-case scenario. We also thought, at that point, that she had a small hole in her heart too. It was a lot to take in.

“It was like a roller coaster. You want the best for your daughter. We tried to remain strong and just prayed that they might have got it wrong.”

The little family returned home. In December, Matilda returned to hospital for an operation on her brain in a bid to stop the seizures. Unfortunately, although the operation was successful in stopping the longest seizures, she still suffers from clusters of smaller seizures. An infection meant that Matilda also spent three months in hospital recovering.

Pete feels that the operation has definitely improved Matilda’s quality of life. He is full of admiration for the way Michelle cares for their daughter 24 hours a day and takes the seizures in her stride – as many as 20 – 30 every day - holding Matilda’s hand and comforting her until they pass.

“I’m out at work all day but sometimes I come home and see Matilda having a seizure and I think, ‘Why?’ You look at her and she is beautiful and she’s smiling in her chair looking like nothing is wrong and the next minute she will go into a seizure. But she’s a strong little thing and she’s got so much to give. She will prove people wrong.”

While Matilda was in hospital she also went from really enjoying her food to struggling to take any food or drink by mouth. She had a gastrostomy ‘PEG’ put into her tummy which Michelle uses to safely give her food, drink and medicines.

It was while the Hughes family had been in hospital with Matilda recovering from her operation that Coronavirus took a grip of the world. They returned to their North Wales home two days into the start of the first national lockdown and immediately went into shielding.

“I felt safe in hospital because the professionals were there. When we came out of hospital into lockdown it was so difficult with no family members around to help. We have a close-knit circle of family and friends and not being able to see them was difficult,” says Michelle.

Then a community nurse told the couple about Tŷ Gobaith. Pete, who is a postman, knew where the hospice was having delivered mail there years earlier, but they both felt uncertain and nervous about visiting for the first time as potential service users.

“Coming here for the first time in the middle of a pandemic was strange, but straight away it felt safe and everyone made us feel so welcome,” says Pete. “We came back with Matilda to stay and the nurses were amazing. They worked with Matilda and she has physiotherapy. Because of the pandemic we didn’t get to mix with other families but everyone put us at ease.”

Michelle adds: “It felt very odd letting other people do things for Matilda instead of just me, but the nurses are so professional and understand her condition that we had such trust in them from the start. The next time Matilda came, we went home. It was the first time I’d ever been away from Matilda but we phoned and Ami the physiotherapist sent us beautiful pictures of her enjoying the sensory room and going for walks in her pram. It was lovely to be able to share them with our family and show them how well she was doing.”

Tŷ Gobaith has also been able to support the family with regular welfare calls to check they are OK, and online physiotherapy by Zoom. Ami delighted Matilda by also delivering a bubble tube so she could enjoy sensory play in her own home.

Michelle continues: “The support from Tŷ Gobaith has been phenomenal and that is during a pandemic. At the moment just having Tŷ Gobaith here is incredible and we feel in control, and we know there are more services available. Matilda is very small now but she is complex and I can see that as she gets older it will be nice to have time away and for her to have that time with other people as well. We know that when she comes here she is happy and safe and that she gains so much.

“Life would definitely be different without Tŷ Gobaith. The support is just amazing and we are so fortunate that it is here on our doorstep.

“I would like to say thank you to people who donate and fundraise to keep Tŷ Gobaith's services running. It’s not somewhere that you think you’ll ever need to access but when you do you see how much joy it brings and how much they help children and families like us.

“We are not sure what the future holds for Matilda. We’ve been told she might not ever walk and talk but we just need to remember how amazing Matilda is and what she is achieving because it is already so much more than we expected was possible.”

Pete agrees: “I wouldn’t change Matilda for the world, but I would change her condition. At the end of the day she is what she is – she’s complex, she’s unique, she is beautiful and we love her to bits.”

Matilda’s family are so bowled over by the support she has received from Tŷ Gobaith that her Nanna Sue has already raised more than £1,000 making beautiful hanging decorations from conkers called ‘Matilda’s Hearts’, and the family also took part in the hospice’s 10 mile Take a Hike sponsored walk, trekking around the Great Orme with Matilda and raising another £1,000.

Fundraising Director Simi Epstein said that she hoped Peter and Michelle’s bravery in sharing their story would show people the importance of keeping services running at Hope House and Tŷ Gobaith.

“There is no doubt that the last 12 months have been a challenging and testing time for so many people, and we have found that children and families have needed our help and support more than ever,” she said.

“But it was, and still is, a struggle to cover our costs. With our shops closed for long periods and our charity events cancelled, we are more dependent than ever on people who believe in what we do and want to help. With their donations we can continue to be here to help children like Matilda.”

Donations can be made online at www.hopehouse.org.uk/matildas-story