PARENTS TOLD TO PAY £6K TO TALK TO LOLA
WHEN amateur actress Ros Hannam was pregnant with daughter Lola, she dreamed she would grow up to appear in the West End one day.
But in October 2018, just four and a half weeks after she was born, her parents – secondary school teacher Ros and husband Josh – were told Lola was profoundly deaf.
The couple, from Caldicot, faced the stark reality that Lola might never be able to hear and decided to learn British Sign Language (BSL) to communicate with her but despite the skill being a basic necessity for the family, they were told they needed to foot the £6,000 bill themselves.
Now 16 months old, Lola has a cochlear implant fitted and responds to some sounds. But doctors don’t know if she will be able to communicate orally.
Ros, 37, said: “We were all completely devastated with the diagnosis, as any parent would be. You just want your child to be happy, healthy and normal.
“I had a bizarre feeling that something was wrong, and when she was four-and-a-half weeks she failed the newborn hearing screening test – she failed that three times. I was shocked but at the same time I wasn’t.
“I was devastated. I was thinking: ‘How am I going to communicate with this child? How am I going to know what she wants? How are we going to do basic things like cross a road?’ Just simple things that you take for granted.”
“In a way it felt like I was grieving for the life I thought we were going to have,” she added.
“Theatre is my absolute passion and I was thinking ‘oh she could end up on the West End or she could be a dancer or a singer’. I had images in my head of us doing shows together. You see families in the theatre all the time. You’ll see a mother, father and daughter acting or singing together and I just had this image of that being us.
“I had managed to hold myself together but shortly after Lola was diagnosed my mum started to cry and said: ‘Does this mean she won’t ever hear you sing?’
“Suddenly I realised no, that’s not going to happen and I lost it. I went into work the next day but I couldn’t stop crying.”
“Eventually I pulled myself together and was like ‘right, we need to do something about this’.
“I started to look into sign language courses in Newport and was told I could apply to the Deaf Council for some funding. But I was thinking ‘why is this not available?’. It’s ridiculous.
“That’s when I found out Josh and I needed to cover the cost of lessons to get to level three – so a level where we can have a normal conversation – ourselves, and on average it’s around £6,000. Nobody has that sort of money and we certainly didn’t.
“We felt very, very let down and afraid that we might not be able to communicate with our daughter.”
Ros and Josh, 31, got some basic support through Monmouthshire council and their families had 10 hours of lessons for free through the National Deaf Children’s Society.
But what was offered didn’t come close to what the couple need to have day-to-day conversations with Lola, so they turned to fundraising.
Thankfully, the generosity of friends, family and the Elusen Jac Bach Charity means they will begin their training in the coming weeks.
Lola had her cochlear implant, a device that is surgically implanted in both ears and can allow deaf people to hear, fitted in September.
Since having the device switched on in October, Lola has begun to respond to some sounds and loves to dance to music.
But it’s difficult for doctors and her parents to know how much the tot can actually hear, and if it’s enough to allow her to communicate orally.
Ros said: “I feel like I have to be one step ahead of her because we are the ones teaching her at home.
“We did classes called Tiny Talk when I was on maternity leave and she thrived. Since then she has really come into herself and is learning one or two new words a week – she probably knows about 30 words now.
“Hopefully we can start the BSL classes soon and then she has this option and we’re able to communicate properly with her.
“I’ve had to be very proactive throughout the past 16 months. I’ve had to fight to get the support we need and luckily I’ve had friends and family who have been able to help us, but there are families out there who won’t know what to do or where to turn.”