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After three years of trying I was finally pregnant, and my fiance Dariusz (36) and I were over the moon – it felt like an unbelievable gift.
My bump swelled week by week and we were so excited to meet our new arrival.
We had our first scan, and there was her little heartbeat bumping away on the screen, good and strong. From what we could see on the screen, she just looked absolutely perfect. I couldn’t wait to be a mum.
Victoria was born by caesarean in June 2015, weighing a healthy six pounds. She was whisked away as soon as she was delivered. I could hear her crying and I couldn’t wait to have my first cuddle with her.
Then the midwife came to me and told me that she was going to bring Victoria over to me, but there was a problem with her legs.
She told me not to worry, that there was nothing seriously wrong, but as she handed Victoria to me, I looked at her legs and they were bent underneath her at strange angles.
She was wrapped in a blanket and had beautiful blue eyes and lovely pink lips, but her legs weren’t right. It was as though time was standing still, I was just in complete shock.
The doctors came to me and explained that Victoria had been born with a condition called deformity tibial bilateral hemimelia, which means that certain bones were missing her legs.
Her case was severe because it involved both legs. I was just in shock. I couldn’t believe what I was seeing.
I’d expected my baby to be perfect – but she was far from it. I just wanted to get up, walk out of the hospital and leave her there. I couldn’t even bring myself to look at her legs.
"Why has this happened?" I kept sobbing to the doctors. Was it something I had done wrong while I was pregnant?
But there was no explanation for it. They said it was nothing I had done, but it was just one of the unfortunate rare things that can go wrong during pregnancy. My poor girl had just been incredibly unlucky. It just seemed so unfair.
After two days the doctor came to me and suggested that both Victoria’s legs were amputated. I couldn’t believe what I was hearing. My baby had only been born two days before. Now they wanted to cut off both her legs.
There was no way that they were mutilating her like that.
"We can’t let them take her legs," I sobbed to Dariusz. He held me close, comforting me. And we both agreed, there was no way it was going to happen.
So we took Victoria home after refusing to go ahead with the amputation. I was determined that my little girl wouldn’t be without her legs, however useless they were.
But Victoria proved to us what an amazing little fighter she really was. She adapted to having her bent legs amazingly.
When she wanted to walk, she would roll forward and prop herself up on both of her knees. There is no stopping her. She gets around as fast as lightning.
She plays on the swings and slides, just like anyone other little girl her age. She may not be able to run through the playground, but when I lift her onto the swings and put her on top of the slides, she screams with joy as she slides down.
And she’s such a smiling happy little girl too. She doesn’t get miserable because she can’t walk properly – it’s all she’s ever known. And now I love her so much, I wouldn’t swap her for the world.
When I think back to how I wanted to leave her in the hospital and walk away, I feel guilty because now I love being her mum. She is like a little ray of sunshine.
Last April we met an American doctor called Dror Paley. He came over to the UK to give a talk on Victoria’s condition and we met up with him.
He has told us that he can help Victoria walk again, by giving her an operation using metal rods to straighten her legs out. I just started crying with relief and happiness. It will cost about £300,000, and now we are frantically fundraising.
More than anything in the world I would like to be able to give Victoria the gift of being able to walk, just like any other children her age. I want her to be able to run and keep up with her friends; I don’t want her to be left behind and stared at, just because she can’t walk.
A rare condition that happens in one in a million live births…
Tibial hemimelia is a very rare disease, occuring in one in 1,000,000 live births.
It is characterised by a shortened or absent tibia (also known as the shinbone) and relatively unaffected fibula (calf bone).
It causes marked shortening of the involved extremity and can leave the feet and ankles severely deformed.
The defect could be either complete or incomplete, and occurs either as a single disorder, or as a part of more complex malformation syndrome.
Doctors may decide to amputate or perform reconstructive surgery, which depends primarily on the ability to completely extend the knee joint with active quadriceps function.
Most patients will require some form of amputation. Almost all patients will require surgical intervention, and all patients will require orthotic treatment at some point in their lives.
It would have been no good if I had agreed for doctors to amputate as once her legs are gone, there would have been no bringing them back. But time is running out for her. She needs to have the operation before she gets much older as there is a better chance of success. We want her to be treated whilst she is still little to save her the trauma of endless lifelong surgeries and pain.
She is starting to notice that she is different to other children, even though she is so brave and determined and has adapted as best as she can. Her cousins are running around the house while I hold her in my arms.
It’s heartbreaking that she wants to join in and run after them and she can’t. Sometimes I just burst into tears for her, worrying about what the future holds for her. Her legs are so small that they fit into my hand. And I know that I’ll do everything I can to save them.
To donate to Victoria’s fund, click here.
Last year we told how a 10-month-old baby’s legs were fused together due to rare "mermaid’s syndrome".
In February we reported how a baby had his left leg and four inches of intestines removed after an infection caused by swallowing a bouncy ball.
Niclas Brulls swallowed the one-inch ball at his home in the city of Cologne in western Germany's state of North Rhine-Westphalia on Boxing Day.
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