‘Our baby girl was born with no eyes’
Laura Duffy-moss and her husband John are navigating rehabilitation for their daughter with the help of the charity Guide Dogs
When Laura held her newborn daughter Margot, she knew something was wrong and her mother’s instinct kicked in. “Margot was born at 8.45pm. At around 3am I was holding her while my husband John was asleep. Everything had been so chaotic, it was the first time we were on our own in peace and I could have a proper look at her,” she says.
“We’d been aware she’d not opened her eyes, but that isn’t wholly unusual for a newborn. That particular aspect of Margot hadn’t troubled me. But then, as I was looking at her, I could see her eyes were quite sunken. It was the sinking that really worried me.”
After voicing their concerns, Laura, 37, and John, 33, were referred to an emergency eye clinic where Margot was examined.
“We didn’t know this at the time, but Margot’s eyelids were fused together. They used tiny metal clamps to prise her eyelids open,” recalls Laura, a school administrator.
“John had to hold her while they did it. I remember sitting there in floods of tears because she was screaming. They couldn’t get her eyes fully open and we were referred to a specialist ophthalmologist.”
After four days of worry, Laura and John received the diagnosis that their second child (they already had a daughter, Bernadette) had been born without eyes due to a condition called bilateral anophthalmia, meaning her eyes and optic nerves hadn’t developed in the womb. The condition affects just one in 100,000 babies.
“It feels like an awful thing to say, but it was so traumatic. The night before we found out we both said that we thought something was wrong. I’d been flashing my torch in front of her eyelids with no response,” explains Laura.
“Even though we expected it, having the confirmation felt like my world had shattered. I was inconsolable.”
Despite the “trauma”, the pair admit it was somewhat reassuring to discover their concerns weren’t unfounded. “It was vindicating,” says John, a theatre manager. Because of her condition, one-yearold Margot’s life is filled with hospital appointments and operations, and the little girl receives treatment from York Hospital, Birmingham Women and Children’s Hospital and Great Ormond Street Hospital.
“She undergoes surgery every three months. She was just over three months old when she had her first procedure. The surgery is to fit silicone implants into her sockets to ensure that her skull and face grows as it should,” says Laura.
Terrifying operations
“The first surgery was definitely the worst. It was absolutely terrifying, she was still so tiny. Just the thought of it made me feel sick. Everything’s always gone smoothly, but it doesn’t make it any easier. It feels tense and heartbreaking until they say she’s OK.”
Thanks to genetic testing and MRIS, medical professionals established that Margot’s diagnosis “was isolated from anything else”, Laura says. However, she and John were warned there were things Margot may never do, or that would be delayed, because of her lack of vision.
“There was a risk her neck muscles wouldn’t develop properly because the
lack of vision meant she wasn’t moving her head from side to side as a baby to look at things,” explains Laura. “Margot’s always going to face challenges, but she’s surpassed every single expectation we’ve had.”
And John says, “No one told Margot she might be delayed. A lot of the time you don’t even notice it. There’s the odd time when you put her next to a kid who’s the same age and think, ‘Margot’s not doing that’, but every child is different.”
When Margot was 12 weeks old she began receiving support from Guide Dogs, making her one of the youngest people to be supported by the charity. With the help of senior habilitation specialist Kate Reed, she is learning how to navigate life independently.
Laura says, “I’d always had a perception that Guide Dogs was just about the dogs, but it couldn’t be further from the truth. John made a self-referral and we had a meeting with Kate when Margot was just over six weeks old.
“Kate came to us with a massive smile on her face, sat down at the kitchen table with a cup of tea and told us everything was going to be OK. Up until that point, everything had been so medical and worrying. It felt like a huge weight had been lifted.”
She adds, “Kate is starting to prepare Margot for things like reading Braille. She will work with Margot to learn how to use a cane. When Margot goes to school, she will help her learn her route, such as when there is a road to cross.”
‘Her eyes and optic nerves had not developed’
Long-term support
When she’s old enough, there’s scope for Margot to get a guide dog too.
“If Margot wants a guide dog, and Guide Dogs believe she is suitable for one, she will have one,” says Laura. “I think one of the loveliest things about it is that Guide Dogs will support Margot forever. They will support her in any way they can,” John says.
Moving forward, things look bright and
Margot is taking it all in her stride.
“Margot’s changed our lives for the better. There are so many things we used to take for granted that now we don’t,” says Laura.
“We feel very strongly that Margot can achieve anything she wants. When she was first diagnosed, we felt grief about what she couldn’t do, whereas that is so far from how we feel now. We’re excited to see what she’ll become.”