In the sprit of Dwarfism Awareness I though I would introduce you to some special little friends living in South Africa
My name is Pamela, I got married to Mick when I was 24 and two years later I feel pregnant with twin girls. It was quite a challenge, but we managed. When my daughters where 5 years old, Mick and I decided to try for another baby – I really wanted to have one baby that I could enjoy. We tried for quite long, and I didn’t want to go on any medication, because I was really worried about having another set of twins.
Three years later we got it right and I was really over the moon with joy. The doctor confirmed that I was pregnant and it was just one baby, so now it was a race to find a name that all four of us loved. At about 3 months we went on holiday, and I remember seeing at least 5 special needs children with their families on holiday, I told Mick how I thought this was a sign that something is not right with our baby – he told me it is just normal for me to worry about the baby. But still I had this feeling that all was not well. At 27 weeks, the doctor saw problems – and told me that the baby’s arms and legs had stopped growing – ‘what does that mean???’ I had never heard of such a thing, that is just ridiculous!!! I wasn’t worried about Down syndrome, because I had had all the tests and all were fine. Then the word ‘Dwarf’ came up, and I was sent to a specialist that confirmed my baby was going to be a dwarf with a condition called Achondroplasia. I really can’t explain the shock I was in, we knew nothing about this condition and I think I had seen maybe 1 or 2 dwarfs in my entire life. Naturally we started gathering information from the internet, and then realized it was not such a terrible disability.
The last few months of my pregnancy were really bad, I was so worried that my other daughter’s were not going to accept her, I was worried about was she was going to look like. I was worried about her mentally, and with all the hormones raging – I cried for three months straight. My husband didn’t know what to do with me. Then the day finally arrived and the moment she was born the room, which was full with nurses and doctors, went completely silent… I could only hear my voice asking ‘Is she alright?’ No one would answer me. Then I looked at her and she looked completely normal, I think everyone was shocked that she looked like any other new born baby. The only thing we notice was her tiny little hands, her little fingers and palms where short and fat, non-the-less, they were the most gorgeous hands I had ever seen. We all fell in love with her immediately, she was just as gorgeous and my other two darlings.
Other than Valentina having yellow jaundice, everything was pretty normal in the beginning. At 6 weeks we went to the Geneticist, Mick and I didn’t want to do the blood tests on her – thinking what ever she will be, she will be. The diagnosis was either a severe case of hypocondroplasia or a mild case of achondroplasia. We were really happy with this, and were given a list of symptoms. I battled to find growth charts and milestone charts, but realized early on that her muscle tone was not great, so we started with physio and a lot of other activities for her. Her first operation was of grommets and removing her adenoids at 8 months, which went really well and made a huge difference. A big concern was her spine, initially it was confirmed that she had scoliosis and kyphosis, but both were not very bad, and were just to be monitored. At about 12 months the kyphosis started looking really bad, and I struggled to get a straight answer from all the doctors I had seen. After months of searching for a doctor that knew something, I found a professor that specialized in congenital spinal conditions. He assured us all was fine and it was just her bones growing at a different rate. I was overjoyed.
It has been a really long road and a lot of doctor’s visits, Geneticist visits, lots of x-rays and one operation so far, but what has touched me the most has been the overwhelming support I have received from my family and friends. Don’t get me wrong, there have been many hurtful comments and remarks, but mostly it has been really good. People are far more willing to except differences than I thought. I really try to be open and upfront with Valentina’s bone condition, but sometimes you really don’t feel like opening up and discussing it all the time. I am lucky to have a handful of people that I can turn to if I have had a bad day, mostly my sister which has been a wonderful pillar of support. It is also sometimes really hard to see children of her age and younger doing what they do, and seeing how far behind she is, but it is something I have to get used to. I often find myself looking at other babies and admiring their long arms, long legs and beautifully straight spines and think I never noticed that before Valentina was born. I know she will be able to do what ever it is that she wants to, but as a mother – knowing her battles ahead just to do day to day things is really heart breaking.
As Valentina grew, we notice that she is really a shining light – everyone that meets her falls in love with her instantly. Her blue eyes and gorgeous smile captivates everyone’s heart. Now that she is 15 months old and I look back on the past two years, I have grown as a human being because of her. There has been such hard times, and a lot of soul searching – many tears and questions. But I think our family has become a lot stronger and a lot closer because of our experience. At the moment I am just trying to enjoy my three girls, and I know there will still be hard time in the future, but I will worry about them as they arise. Over all I am looking forward to our future
Pamela and Valentina
Raising Leah 