A loving mother has opened up on raising a child with a rare congenial birth defect, saying she wasn't sure if 'we would be able to take her home'. One-year-old Clemie Roberts-Dadley was born with Pierre-Robin Syndrome, a rare condition characterised by an underdeveloped jaw, backward displacement of the tongue and upper airway construction.
Around one in 18,000 children are born with the condition. Her mother Jodie Roberts-Dadley, 36, said there was an issue in the womb which had a 'knock-on effect with everything central'.
Due to her condition, Clemie must wear a bone anchored hearing aid (BAHA) which attracts some attention when the family are out and about. This is one of the many challenges to Roberts-Dadley family has faced over the last year.
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For Jodie and the family, who live in Hucknall, it has been a 'tough first year', with frequent visits to the hospital and close monitoring of Celmie's ears, eyes, heart and brain. But despite the difficulties, Jodie said Clemie is now doing 'amazing'.
"Everyone falls in love with her, she's such a happy girl," she said. Speaking out on her daughter's condition, Jodie said: "I feel like there's been a lot of challenges. It's been really hard.
"Being out and about with breathing tubes, suction machines, breathing tubes and now a very visible hearing aid, we just attract attention and it's not always positive attention. It's constant questions about what's that on her face or on her head.
"You become almost this target and it's interesting how many people just walk by you and stare at you. I feel like that's been a really tough thing as a parent especially raising two other younger children, when you're just trying to live as normally as possible.
"In the early days we didn't know if we were going to be able to take Clemie home. We had a 100 day hospital stay.
"She wasn't actually big enough because she was only 2lbs 3oz when she was born so she wasn't big enough for the respiratory nasopharyngeal airway (NPA) that they would've used. It was just in the thick of coronavirus so the whole family just got separated.
"It was 100 days of not being able to be together. So it was one parent in, one parent at home with the younger two who had this beautiful sister that they'd never met.
"It's been a tough ride." Jodie's husband James, as well as their two older daughters Olive and Eden, took part in a Santa walk at Shipley Park, Heanor, in support of the National Deaf Children's Society.
They raised more than £2,000. Jodie said it was important for them to raise awareness around Pierre-Robin Sequence, with people now encouraged to ask questions about the condition.
She added: "It went really, really well. When we first saw the walk that the National Deaf Children's Society did it was just something that jumped out at us as something we could do as a family.
"We put it to the girls and they were just really excited by it. It's just great that we could do it all together.
"It raised awareness, especially among their class friends and encouraged a lot of people around the community to ask questions. Clemie wears an unusual type of hearing aid - a BAHA, which is a bone anchored hearing aid and a lot of the time people look at it and they're not really sure what it is. The more traditional ones are the ones they wear behind their ears.
"So it was really good for us as a family because people started to ask questions. And a lot of people came to support us.
"One of my friends has a dog, a Dalmation, and he's a deaf dog and she asked if she could walk with us. I have another friend who is a teacher for the deaf who came to walk too.
"We had a really good time. I was really proud of the girls."
Speaking of Clemie's condition, Jodie said: "It's rare - I think it's one in 18,000. In the womb something would've obstructed the growth of her jaw, which then has a knock-on effect with everything central.
"She was born with a cleft pallete and then they monitor closely her ears, her eyes, her heart and her brain. With Pierre-Robin it's not black and white, so not every child has the same symptoms and the same outcome.
"They are all very different which is quite hard as a parent because with the diagnosis you don't just look at it and go 'OK, well I expect this, this, this and this'. You don't know what's unfolding in front of you.
"It was a tough one; especially her first year of life. We had to have a lot of help from respiratory because her tongue would fall back in her throat, so she would have sleep apnoea.
"So we used to have what was called an NPA which would hold the tongue forward. Also, she had a feeding tube up until her operation which was in February this year.
"So she had a pretty rough first year. It wasn't the easiest first year for her.
"But she's amazing, she's absolutely amazing. Since having her hearing aid, that's brought on her attention.
"She's starting to sign now which is really lovely. We're working with speech and language to hopefully get some speech come along, which we don't have any of yet.
"But she's communicating well and she's just amazing. Everyone that meets her falls in love with her - she's such a happy little girl."
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