Our daughter Hope was born on the 1st September 2009, after 9 long months of doctors telling us how hopeless it was for her survival, as she was so small in the womb. She would either most probably die or be born with severe health and mental problems - and so gave us the option to abort. We decided to hold onto hope and eventually she was born at 4lb 2, healthy and very tiny!
After only a week our brilliant geneticist took one look at her and recognized that she had a condition called Primordial Dwarfism, which we had never heard of. She didn't know too much about it but put us in touch with another doctor in Cambridge who did. But even after all these appointments things where still very vague and daunting - we knew some of the facts but it all seemed so clinical and depressing. It was only when my Mum told us about a TV program called "Britain's Tinniest Toddlers" that we learnt more - more of the everyday life things that we wanted to hear about, the emotional and real stuff. We cried most of the way through, it was so good to see other families that were in our position but further on. Also through the program we heard about 'Walking with Giants Foundation' and so contacted Sue and she got our family a place on the August 2010 conference!
Up until then I struggled a lot as a mum. I was with her 24-7 and didn't stop thinking about how different she would look and all the struggles she was going to face with possible health issues and how massively her size would limit her. I couldn't get away from the stares and the comments when in public, even though most were very nice. After I had to explain that she wasn't fresh out and that she wasn't 'so advanced' for a two week old, I had to then go on explain why she was so tiny and that there wasn't anything doctors could do. It was a constant reminder of having a child that was different.
We then discovered that she has a moderate hearing loss and so began the battle of trying to use hearing aids on a child that is growing extremely slowly. The normal hearing aids could never stayed on as her ears where so tiny. Since then our wonderful Audiological department has found her a different type of hearing aid and she now has an elastic head band with a bone conductor on it which translate sound into vibrations...basically a very clever device which is helping her hearing lots. Her speech is behind but since the new hearing aid has come she has just started saying 'bababa'! (She is 16 months now) We are very pleased!
Since she was 6 months we have tried feeding her solids but as we have now learnt feeding is a common problem. So now she still doesn't eat like a normal 16 month old - she plays with food and paints our walls. Because of this she is on a special high calorie formula, which gives her all the right vitamins and mineral for a child her age. It was also given in an attempt to reduce the frequency of her night feeds, which were every 2 hours. Night feeds have since got a lot better but hearing from other parents, broken nights are quite common!
Other various things have come up on her journey, like a mysterious problem with her knee, which has slowed down her movements.
But we have just received her first pair of specially made shoes, which was very exciting, as this will support those tiny ankles, and hopefully help her to walk soon.
So after nearly a year of us still not knowing much, we went to our first WWG conference! ... It was fantastic, better than we could have hoped for, so warm and welcoming and so much fun! For me it was the first time I could speak to other mums and share about how difficult it is when in public trying to describe your child's condition without saying the words Primordial Dwarfism because I didn't like the sound of it. It was sooo good talking to other parents who had children who were 5, 6, 14, 27 and even 31!
We heard the trials but also joys that they had gone through. It was an emotional time, but also the start of a great experience of accepting and embracing our child's life as an awesome gift from God. To see other children like Hope running around, jumping, talking, joking was incredible. We know as Hope grows up spending time with children like herself will be essential so it is great we have met these new friends. For our older daughter too, it was such a fun week, everyone accepted her as warmly as the other children and I know it will be really important for her to grow up knowing children like Hope.
I still find things hard, with all the medical appointments, all the attention on her everywhere we go, worrying how it will effect our eldest daughter, and one day worrying how I'll find tiny ice skates(!). But whenever I think of all our friends in the Walking With Giants Foundation and how we can share in these struggles and help each other, I feel a confidence that things will be fine - and an excitement about us all going to the next conference!
Mary and Nate - Hope's Parents (UK)