When my boy was born with facial deformities doctors offered to operate. But my Leland is beautiful - just the way he is. By Samantha Wicks, 38

“He’s a bit of alright, isn’t he?!” I giggled to my neighbour across the way. I’d spotted Andy walking down the road a couple of times, and he’d caught my eye. I was desperate to talk to him, but too shy to ask him out. 

“I agree, but I would say that - being his auntie,” my neighbour responded, laughing as my cheeks flushed bright red. “Please don’t say anything to him,” I begged, mortified.

But she couldn’t resist - and thank God. Andy swept me off my feet with a string of romantic dates and after chatting almost every day, I soon felt myself falling head over heels.

At the time, I already had three boys from a previous relationship, and before meeting Andy I’d stubbornly insisted I didn’t have time for romance. But Andy was different.

It didn’t bother me one bit that he had Treacher Collins syndrome, a genetic condition that causes facial deformities and some health complications. To me, Andy was gorgeous, funny and sweet - and I was completely in love.

Andy slotted perfectly into my busy family life, taking to the role of stepdad like a duck to water. We had a full house already, but it wasn’t long before I started feeling broody.

There’s definitely room for one more, I thought to myself, cuddling up to Andy one night.

As our relationship blossomed, Andy had begun to open up to me about his syndrome, and how it had affected him when he was a child.

Kids at school had called him “rat boy” and made fun of the aids he had to wear in his ears in order to hear properly. When he was very young he’d often lash out as a result of the bullying.

But luckily, he’d had a fantastic support system around him in the form of his family, and had learned ways to deal with the teasing and taunting.

As he told me all this, he warned that if we ever conceived, there was a 50/50 chance our child would carry Treacher Collins too. But I didn’t care.

“With a dad as fantastic as you, even if our children did have Treacher Collins, I know you’d be there for them every step of the way,” I said firmly.

In 2006 I fell pregnant, and barely gave a thought to Treacher Collins. I was far too preoccupied with excitement about mine and Andy’s first baby together.

My older boys were over the moon when they heard it was another boy. “Yes! No sisters!” They cheered when I told them.

Treacher Collins hadn’t stopped me from loving Andy when I met him, so I knew there was no way it would change my feelings about our baby.

As luck would have it, all my scans throughout the pregnancy came up clear, showing no abnormalities of any kind. When the due date came around, I was ecstatic as I delivered a healthy baby free of Treacher Collins.

“He’s beautiful”, said Andy, cradling Callum as the tears welled up in his eyes. I couldn’t wait to take him home with us.

Slowly, we settled a new young one into the house, and though it was more hectic and full than ever, I knew we could make room for one more.

In 2008, I floored my boys with another pregnancy announcement. “It better be another boy!” They all responded, only half joking.

As it turned out, their wish came true - I was expecting my fifth baby boy! Just as with Callum, all my scans showed up clear, and all signs pointed towards another healthy baby.

In fact, the prospect of Treacher Collins barely crossed my mind as the pregnancy progressed. There was no sign of it in the scans, and our luck with Callum had made me rest easy.

It was Christmas Day in 2008 when my waters broke. This is the best Christmas present ever, I thought, as I was rushed straight to the delivery room as Andy whisked the kids over to my mum’s.

But as I made the final push and Leland came into the world, I instantly knew something was wrong. He was incredibly pale, and the doctors grabbed him from me before I got a chance to hold him.

Oh my god, I thought, lying helpless in my hospital bed. Please don’t be anything serious, I willed desperately. Signs of Treacher Collins hadn’t showed up on any of my scans, so I feared something much worse had, undetected, afflicted my newborn son.

Andy went to get information from the doctors, and when he came back to me he broke the news. “Leland has Treacher Collins”, he told me gently.

A sufferer himself, he’d known by just looking at Leland, before the doctors had said a word.

“Is it serious?” I asked, beginning to panic. I didn’t care one bit if Leland had Treacher Collins, but I just needed to know he was going to be okay.

Thankfully, when the doctors came back the news was as good as it could’ve been. Leland had a hair lip and a deformed left ear that needed surgery, but otherwise, he was fine. I breathed a huge sigh of relief.

“He’s beautiful,” I said, and I meant it. Leland had facial deformities, but it didn’t make a difference to the love I immediately felt for him. It only made him even more special.

But that didn’t stop other people being cruel, even in Leland’s earliest months. Andy and I saw past Leland’s deformities, but people would often make snide comments in the street, or even recoil at the sight of him.

“Urgh, that’s an ugly baby”, one stranger commented, after peering into the pram. I was livid.

If that weren’t hard enough to deal with, we also had to watch Leland go through surgery to correct his hair lip and save his hearing. It was heartbreaking seeing him in pain at such a young age, even knowing that the surgery was necessary.

So when doctors asked whether we wanted Leland to have further cosmetic surgery to ‘fix’ his face, Andy and I knew our answer in a heartbeat.

Andy had grown up with Treacher Collins, and his parents told him the option of cosmetic surgery was open to him when he turned 18.

After a difficult childhood, when Andy finally reached 18 he decided against cosmetic surgery. He’d grown to accept and love the face he’d grown up with and couldn’t bear to part with it.

“Why would I need to change myself?” he once told me, recounting the story. And I’m so glad he didn’t.

So when presented with the option to ‘fix’ Leland’s face, we immediately turned it down. We loved our son just the way he was, and wanted him to love himself too, as Andy had learned to as he grew older.

What kind of message would we be sending to him? I thought, as the doctor talked over our options. My worst fear was Leland growing up and thinking we’d changed him because we didn’t love him just the way he was.

It wasn’t an easy decision, but we wanted to leave any cosmetic surgery decisions in the hands of Leland himself.

He’ll be able to choose at any time whether he wants to change his face or not. As he hates operations and going to the doctors, I don’t think it’ll be anytime soon.

School has been difficult for our boy, with the same cruel taunts that followed Andy now haunting Leland in the playground.

But like Andy, Leland has a supportive network surrounding him - including a dad who knows exactly what he’s going through.

Andy has always taught Leland that his best weapon is being able to laugh at himself. “If you call yourself names first, the bullies can’t do anything to you,” he tutored him.

In school, Andy took the cruel nickname “rat boy” and owned it, taking all the power away from the bullies.

Now, Leland is doing the same thing, and holds his head high if anyone calls him names or teases him.

It still gets to him occasionally, but he knows we’re always here to look out for him - and the school is fantastic at responding to the first hint of trouble.

Leland is now a happy-go-lucky nine year old, and nothing is holding him back. Whether he does or doesn’t decide to go ahead with surgery when he’s older, me and Andy will be behind him the whole way.

Bullies can taunt all they like, but I’ll carry on teaching my boy that he’s beautiful - just the way he is.

Samantha was so proud of her son Leland and was keen to raise awareness of his condition, Treacher Collin's Syndrome. Sell My Story helped Samantha and her family to appear on ITV's This Morning as well as in Take a Break magazine. If you'd like to raise awareness of a particular cause or campaign, why not contact us on 0117 973 3730 to find out how our team can help.


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