Baby Margot lost her eyes in the womb from a rare condition (Image: Express)
Emotionally and physically drained, Laura Duffy-Moss turned to her shattered husband more in hope than expectation and asked if he thought their three-day-old baby could see. It was 72 hours after Margot’s premature arrival had forced John to deliver their daughter on the living room floor with a midwife on the phone.
Two days of inconclusive tests had raised more questions than answers, and an appointment with an ophthalmic specialist at York Hospital beckoned the following morning. But for now, the more the distraught couple examined little Margot’s heartbreakingly imperfect face, the more they feared the worst.
Sixteen months later, sipping coffee in the self-same sitting room in the quiet Yorkshire village of Askham, holding back tears at the memory, John, 33, remembers replying: “No, I don’t think she can see”, and watching his wife’s world dissolve. “We were both incredibly anxious,” he recalls. “But that Monday night before the Tuesday appointment – Margot was born on the Friday night – was the first time we’d actually spoken about it.”
Laura, 37, continues: “This sounds like an awful thing to say, but the only way I can describe my feelings at that point is grief, which sounds horrendous, because Margot is here and she’s so, so lovely, but at the time it was a trauma.
“We were completely lost and when the diagnosis actually came, as much as I expected it, I completely broke down. I was just crying uncontrollably in the hospital, and I couldn’t see past the next second.”
Baby Margot all tucked up and looking adorable (Image: Express)
Baby Margot relies heavily on her other senses due to her lack of sight (Image: Express)
Today Margot, who has Bilateral Anophthalmia, which occurs in just one in 100,000 babies, and means their eyeballs don’t develop in the womb, is a beautiful, bouncy toddler.
Despite having no sight, it’s obvious she is thriving. When I arrive and introduce myself as “Nick”, she instantly responds: “Nick, Nick, Nick…”
She appears totally connected to what is happening in the room. If anything, her concentration seems more focussed than a typically-sighted one-year-old’s. Yet even before the diagnosis, Laura feared complications.
“Her instinct told her something wasn’t right as soon as we were taken back to York Hospital in an ambulance after I cut the umbilical cord,” recalls John.
“It was about two o’clock in the morning and John had fallen asleep,” continues Laura. “After all the drama of the home birth, I was just sitting there staring at Margot’s face about six hours after she was born. I ended up waking John and saying, ‘She hasn’t opened her eyes yet, something doesn’t feel right’.
“The shape of her face looked unusual and slightly sunken. I know all newborn babies’ faces are puffy and look a bit alien. But my gut just told me something was wrong.”
Midwives performed an eye test and told the couple not to worry, but Laura asked for a further examination in an emergency eye clinic. This involved John having to restrain his screaming six-hour old daughter, whilst a paediatrician tried unsuccessfully to prise open her eyelids with a metal clamp.
“Another registrar took an ultrasound the day after her birth and said he could see the whites of Margot’s eyes and that everything was fine,” John continues.
But Laura wasn’t reassured. Amid lingering uncertainty, the couple – who have an older daughter, Bernadette, now nearly three – agreed to return to the hospital several days later for further tests with a more senior clinician.
The man to deliver the eventual diagnosis to former solicitor Laura and her York Theatre Royal manager husband was Consultant Ophthalmic Surgeon Mr Murad Moosa.
“He did another ultrasound and I could see the cogs turning as he was doing it,” explains John. “He immediately told us he couldn’t see any eyes. ‘There’s nothing there,’ he said, which is when Laura just totally broke down.”
Margot’s parents were grief stricken when they first discovered their daughter was blind (Image: Express)
Although he had never seen a case, he identified the rare condition and explained that Margot would grow up in total darkness.
“I tried to put my arm around Laura and told her everything was going to be fine. I might have even joked about Margot having one of my eyes and one of Laura’s, but she was just inconsolable,” John says with a wry smile.
The extent of Margot’s impairment won’t be fully established until she gains full language skills, but with no eyeballs, she has zero sight and is unable to distinguish between day and night. She must rely on her other senses to navigate the world, a prospect which – initially at least – her parents found devastating.
Laura, who is due to give birth to the couple’s third daughter this August, admits: “Our mentality in those early days was grief-stricken and negative and essentially, ‘Oh my goodness me, what on earth are we going to do?’”
John adds: “I remember leaving the hospital that day and just thinking, ‘How are we going to raise her?’ Getting fixated on the things she was never going to be able to see or do. I was like, ‘She’s never going to be able to play football? She’s going to miss all her milestones. She’s just going to end up in her bedroom unable to do anything’.”
Happily, a little over a year-and-a-half later, nothing could be further from the truth.
Bernadette clearly adores her baby sister and the two girls look gorgeous in their matching dresses. ‘Bernie’ is delighted that baby number three will be another girl. They pair love playing together, Bernie with her toy teddy and Margot with her Llama.
Despite having no sight, Margot is only marginally behind sighted babies in many of her milestones. It is in part thanks to the support of the Guide Dogs charity and, specifically, it’s senior habilitation specialist Kate Reed.
She has been working with the family to help the toddler develop her core strength and ability to perform essential tasks so she can navigate the world without the power of sight.
“Before Margot was born, I thought that Guide Dogs was simply about dogs,” says Laura.
“I never realised how much more the organisation does. Their involvement felt like a huge heavy burden had been lifted off our shoulders.”
Margot with Kate Reed, a Senior Habilitation Specialist for the charity Guide Dogs (Image: Daily Mirror)
Kate’s input has helped Margot become aware of her body, so she’s been moving normally and hasn’t had big issues with muscles not developing. She’s also ahead in other milestones. For instance, she’s already learned to count to ten.
And while she might not have the sparkle a pair of bright eyes create, her body language is normal and she looks and sounds almost identical to any other youngster.
It’s clear Laura and John go out of their way to treat Margot the same as her sister. And her beaming, expressive face exudes happiness.
But Kate and the Guide Dogs, Laura says, have been a Godsend to the family.
“It felt like a light at the end of what was a fairly dark tunnel. She helped us realise that, although Margot doesn’t see with her eyes, she definitely sees things,” says Laura.
“She uses her sense of smell and touch and hearing to create the world we all take for granted. Kate’s taught us to narrate Margot’s life for her, and that’s now second nature to us.
Baby Margot now has a great future ahead of her (Image: Express)
“Now we no longer think in terms of what Margot can’t do. We know that Margot can do anything she wants, and we just need to continue to learn how we can best equip her.
“Kate has given us the confidence to feel like we know what we’re doing – even if we don’t – and to share in Margot’s dreams.”
John is equally grateful for the support of the charity and Kate.
“I was lost, totally petrified,” he admits. “I might have been putting on a brave face for Laura but inside I was thinking, ‘Children learn from what they see, and I don’t know what I’m doing, so how will this affect Margot? How is she going to suffer?’
“But neither of us feel like that now. There’s just no resource comparable to somebody who knows what they’re doing and what they’re talking about.”
For Kate, it’s all in a day’s work, although as she explains, hopefully not forever.
“Meeting Margot at just 12-weeks-old, I focused on supporting her family through the early stages of her diagnosis,” she says.
“As she grows, our work shifts to developing her sensory and movement skills through play. Seeing her progress, from learning to rock herself to standing on her own, even hearing her chuckle for the first time, has been massively rewarding.
“Every step is meaningful. Providing support to families facing early diagnoses ensures the best outcomes for their children and my aim is to empower families toward independence – ultimately working myself out of a job.”
When Margot reaches the age of three or four, she’ll undergo an operation to insert two non-functional prosthetic eyes, purely for aesthetic purposes. Later she may graduate to her own Guide Dog as she becomes independent.
But for now the family remains optimistic for the future.
“The difference between Margot today and Margot on the day she was born is like night and day,” smiles John. “She is never unhappy. I don’t think she knows the concept of being sad or that things can be scary and just has no fears or worries.”
He believes technology may eventually even come to his daughter’s assistance.
“The first successful eye transplant was performed last month, although there was no sight in the eye, but I’m personally hopeful that will change,” he adds.
“Maybe it will be in Margot’s lifetime or maybe it won’t, but either way I just can’t think of a single thing that Margo can’t do with her life, with our support and whatever she wants to do we’ll be right there beside her.”
