FAMILY’S BABY HEALTH HEARTBREAK
ACOUPLE have told how they “prayed doctors had got it wrong” when their baby daughter was diagnosed with a brain condition.
Pete and Michelle Hughes said their “rollercoaster” began when their little girl, Matilda, started to become “jittery and jumpy” and would wake suddenly with her legs in the air when she was just a few weeks old.
The first-time parents from Penrhyn Bay, near Llandudno, weren’t sure if it was just something that new babies did.
But when they asked family members for advice, they realised something was wrong.
Their fears were confirmed when tests revealed Matilda had a neuronal migration disorder, which meant her brain hadn’t developed properly during pregnancy, causing her to suffer clusters of seizures.
The pair have decided to share their heart-wrenching story to help raise awareness and funds for Hope House Children’s Hospices, who supported them after Matilda’s diagnosis during lockdown.
Pete and Michelle explained that they were overjoyed when they discovered they were having a baby after their first round of IVF treatment.
Following a “long and traumatic labour,” Matilda arrived in spring 2019, but soon afterwards the couple found themselves on a journey of hospital tests and operations they never could have dreamed of.
Michelle recalled: “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.
“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,” said Michelle.
“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.”
Pete added: “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 worstcase 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 rollercoaster. You want the best for your daughter. We tried to remain strong and just prayed that they might have got it wrong.”
But in December, Matilda had to have an operation on her brain in a bid to stop the seizures.
Although the surgery was successful in stopping the longest fits, she still suffers from clusters of between 20 and 30 smaller seizures per day.
An infection also meant that Matilda had to spend three months in hospital recovering.
She went from really enjoying her food to struggling to take any food or drink by mouth and had a gastrostomy tube put into her tummy through which she is now fed and given medication.
But Pete feels the operation has 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, holding Matilda’s hand and comforting her until they pass.
He said: “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.”
It was while Michelle and Pete were in hospital with Matilda recovering from her operation that coronavirus took the world in its grip.
They returned to their north Wales home two days after the start of the first national lockdown and immediately went into shielding with their two-year-old daughter.
Michelle said: “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.”
Then a community nurse told the couple about Ty Gobaith.
“Coming here for the first time in the middle of a pandemic was strange, but straightaway it felt safe and everyone made us feel so welcome,” said Pete.
Michelle added: “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.”
Hope House Children’s Hospices – Ty Gobaith in Conwy and Hope House in Oswestry – have striven 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.
Ty Gobaith has also been able to support the family with regular welfare calls to check they are OK, and online physiotherapy via Zoom.
Ami delighted Matilda by also delivering a bubble tube so she could enjoy sensory play in her own home.
Michelle said: “The support from Ty Gobaith has been phenomenal – and that is during a pandemic.
“At the moment just having Ty
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 Ty Gobaith. 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 Ty 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 added: “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 Ty 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 Ty 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 at www. hopehouse.org.uk/matildas-story