Parents branded 'cruel' for having baby with rare condition

Simon Moore and Vicky Moore with their daughter Alice. Photo / YouTube

For most parents-to-be, having a healthy baby is their top concern, but one couple went through pregnancy knowing their baby was likely to have a rare genetic condition, which would mean she would be facially disfigured and suffer from breathing and hearing problems.

Simon Moore, 30, who suffers from Treacher Collins syndrome, and his wife Vicky, 36, from Norfolk, chose not to pre-screen for the genetic condition before their IVF conception.

The couple, appeared on ITV's This Morning with their 15-month-old daughter Alice, who slept through her big moment, to defend their decision and said they had been harshly judged for having her.

"It's natural for every couple to have baby together. Why should we be different with us?" said mother-of-four Vicky who has three daughters from a previous relationship.

"We've had all sorts of comments and it is the bad things that get to you."

Despite coming under criticism by some, Vicky said: "Our close family has been fantastic.

"But even before we had Alice people would stop in the street and go 'urgh' right in front of his face. People would say: 'What are you doing with a muppet like him?'

"But he's a teacher so he's probably more intelligent a lot of people out there."

"With her we've only had a couple," she said of strangers insulting their baby girl.

She added: "A lot of people don't understand what we've been through. They think we're selfish or egotistical.

"But as long as people are saying bad things we'll keep on going and making you aware."

Vicky, who is a communications support worker, also warned that the mutation can occur in the womb without any previous family history, which often goes undetected.

"People who are saying nasty things - it can happen to you," she said. "So please broaden your minds. We're not hurting you."

Vicky, who had previously been sterilised, explained: "We had genetic counselling for a year and half and we could have had PGD."

Pre-implantation genetic diagnosis (PGD), involves checking the genes of embryos created through IVF and enables people with an inheritable conditions to avoid passing it on to their children.

Simon and Vicky's 15-month-old daughter Alice. Photo / YouTube

"It was much more money and a two-and-a-half hour journey away from our house, because we had to go to London," she explained of the £9,000 (NZD$19,000) treatment. "There were more cons than there were pros."

The couple, who underwent IVF, also had the option to have an early termination when the condition was detected in early scans, but Vicky explains: "They said she was possibly unaffected because they said they could see an ear."

Treacher Collins syndrome, commonly knows as TCS, affects one in 50,000 births and can cause absent ears and cheekbones, downward slanting eyes and a small lower jaw.

Luckily Alice has a milder form of TCS than her dad, and her parents said the decision whether or not to have plastic surgery later in life lies in her own hands.

"Luckily she has cheekbones so it's not too bad and her jaw is lovely, so she doesn't have breathing problems," said mum Vicky.

"Her nasal problem is very small, which is why she snores loudly," she explained, as little Alice slept soundly, but loudly, in her mother's in her arms.

"She'll have an operation to anchor her hearing aid into her skull.

"It will be her decision later on if she wants to go for plastic surgery and have proper ears done. But really she doesn't need reconstruction surgery and that's what they saw on the scan."

In a touching moment Simon, who has the condition far more severely than his daughter, paid tribute to his own parents saying: "What Alice does have in common with me is fantastic parents."

"My mum and dad would never treat me any differently. They would never treat us any differently. If there was any new treatment mum and dad would straight away tell me about it. They'd say it's there if you want it. If you don't like it, leave it."

Talking about growing up with the syndrome, Simone, who wears a headband that transmits sounds through bones in his skull, said: "I haven't got something I can hide so I was an easy target at school for bullying. I got bullied a lot. I am not going to say I never had any friends. I had an odd friend."

But in the end, Simon, now a stay-at-home dad, found his happily ever after when he met Vicky at a sign language seminar.

Vicky said: "We were at a sign language class and Simon was helping a teacher. It was his dog I saw first!"

"You do look and you are curious, but I just ask about everything so I just asked about it and went from there," she said, then admitted she fell madly in love.

Their daughter Alice constantly has a running nose, but her chin is not receded, as in classic cases of the syndrome.

Her high palate makes feeding difficult and time consuming, leaving Alice feeling hungry most of the time.

And she also has malformed ears, typical of the condition, with no hole into the inner ear - meaning she is forced to wear a bone-anchored hearing aid.

In a previous interview with the MailOnline, Simon said he would tell his daughter she is beautiful everyday.

He said: "I never wished for Alice not to have TC.

"Even though I grew up with all the problems and complications it really didn't bother me either way whether she had it or not.

"We all knew if she had it that she'd be surrounded with people who loved her whatever.

"There's nothing on this planet anywhere near as special as Alice. She's changed my life.

"There's no doubt about it. She's her dad's little girl and I will tell her she is beautiful every day."

The couple met five years ago at a sign language class when Mrs Moore started fussing over Mr Moore's hearing dog Foggy, and they married in 2012.

Mrs Moore, 36, who has three daughters aged 10, 13 and 15 from a previous relationship, said: "We didn't go into this with our eyes closed.

"We had to go through a year and a half of genetic counselling before we even decided to go ahead with trying for a baby.

Simon Moore and his daughter Alice. Photo / YouTube

"If there was an embryo with the TC gene, then the clinic would automatically destroy it, refusing to put any back that carried it.

"But we knew there was no guarantee how bad the TC would be, if the baby would have it at all.

"It could have been as minor as a slight hearing problem, to being born with no face whatsoever. It was 50/50.

"You go with what medical professionals advise you and they supported us all the way with our decision.

"Ultimately, we didn't care if our baby had TC. Simon has the 'classic case' and he's amazing."

Mrs Moore was sterilised after her three previous children and was not allowed IVF on the NHS because she was already a mother-of-three.

Mr Moore's mother paid for the treatment privately and the couple from Wymondham, Norfolk, are paying her back in monthly installments.

The procedure at Bourn Hall Clinic, Cambridge, was successful - but a 16-week scan showed that Alice had inherited her father's genes.

Mrs Moore, who is a communications support worker who does sign language and is training to work in TV and theatre, added: "I'd be lying if I said we weren't disappointed.

"But after going through IVF treatment, and knowing the risks involved, we were just so delighted to see a heartbeat.

"We didn't care about her TC - we fell in love immediately.

"We risked not having a baby at all by using the specialist method of IVF, but instead we have Alice."

Mr Moore still has to deal with strangers pointing and laughing at him and once on holiday a crowd even gathered to take pictures of him.

His wife added: "People point and stare and Simon often gets funny looks when he walks around the village with Alice.

"They think because of the way he looks he can't, or shouldn't be able to, cope with a baby.

"My neighbour even said we were 'cruel' for bringing her into the world, but she's our little angel, and we wouldn't change a thing about her.

"People literally stop dead in their tracks and point at her. Some have even said 'ugh' and laughed.

"I get asked if I'm their carer, and they look shocked when I tell them I'm his wife, and her mum.

"Some people are blissfully unaware of their own ignorance, while others are just plain nasty.

"Children are the worst because they just say what they see and don't realise how mean they can be.

"One child took one look at Alice and called her a gargoyle."

Alice is now being taught sign language by her father, who has the same level of hearing as her.

What is Treacher Collins Syndrome?

Treacher Collins syndrome affects the development of bones and other tissues in the face.

The signs and symptoms vary greatly, ranging from almost unnoticeable to the severe.

Most sufferers will have underdeveloped facial bones, most notably the cheekbones, and a very small jaw and chin.

Some people born with the condition are also born with a cleft palate.

In severe cases, underdevelopment of the facial bones may restrict an affected infant's airway, causing potentially life-threatening respiratory problems.

People with TC often have eyes that slant downwards, sparse eyelashes, and notch in the lower eyelid, known as an eyelid coloboma.

Some affected individuals can lose their vision.

The syndrome is characterised by absent, small or unusally formed ears.

And hearing loss occurs in around half of all sufferers.

It is usually caused by defects of the three small bones in the middle ear, which transmit sound, or by the underdevelopment of the ear canal.

The condition affects one in 50,000 people and is caused by mutations of a specific gene.

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