Tuesday, March 12, 2013

The difference

When we found out that our daughter had limb differences, I searched for other families, other children that had similar differences. I wanted to connect with these families, find out how they had felt during their pregnancy, handled the arrival of their child, other people's reactions, things that had helped them and what had been supportive on their journey.

The hospital were fantastic and referred us to a genetic specialist, who then arranged for us to see a genetic counsellor. Our counsellor was lovely, very understanding and supportive of our decision to continue our pregnancy. The hospital arranged for us to meet with Limb Specialists at the Children's Hospital during the pregnancy. We met with Professors and Surgeons and were handed prosthetics that our daughter might one day want or need to use. We discussed adapting her clothing to suit her difference. Carefully selecting clothes that we could easily alter the sleeves. Dresses instead of pants to accommodate the cast that would be placed on her little foot when she was born to correct her club foot. We wondered how she would eat, use a fork or spoon, hold a cup to drink. Would she be able to ride a bike? How would we explain her differences to our family, her brother, our friends? Would she still be able to attend mainstream schooling? It was completely overwhelming, but we wanted to prepare ourselves and understand what options and support were available and give our baby girl the best possible start in life.

One thing we wanted was to meet other families. Our counsellor mentioned one group the name of which I don't recall, but they had no support groups in our area. There was no website or forum that supported families who were expecting a child with a congenital abnormality, especially a limb difference. I was lucky that I met a lady by pure chance after a Facebook search, whose daughter also had limb differences and she lived locally. She was starting an organisation called CHILD - Children Having Infant Limb Differences to help families like us that were faced with a 'different' outcome than a normal pregnancy. I felt relieved, connected and so grateful. We exchanged emails and then messages via Facebook. We both embraced our daughters difference's and were sure that our daughter's would become life long friends. As Yasminah grew in my womb, my friendship with Katherine grew. I shared her passion of wanting to help provide a supportive place for new families who were diagnosed with a congenital limb difference during pregnancy or after birth. From our personal experiences we envisioned supporting and guiding families through friendship and educating the community about limb deficiency. Katherine was also working on her book and I was honoured to be asked to contribute Yasminah's story.

Whilst it was mentioned during my pregnancy that the Dr's weren't sure 'what the outcome would be for our baby' no one ever mentioned that our baby could die in utero. We were preparing for a life. For her life. The exciting, wonderful life of our second child, our first little girl. It wasn't the dream we envisioned, but the difference to the eventual reality was unfathomable. We dreamed of a life.

I will never forget receiving a message from Katherine asking if Yasminah had arrived yet. Katherine kindly offered me her little girls clothes that she had outgrown. Heartbroken I had to tell Katherine that Yasminah had passed away unexpectedly in utero a few days before.

Katherine still wrote and published her book called 'Our Little Miracles' and she very kindly dedicated the book to Yasminah. I was too distraught to contribute her story, but I'm so very grateful that Katherine still included Yasminah as one of 'our little miracles'. Yasminah is our little miracle. Her story needs to be told. There are approximately 1 in 10,000 children across Australia each year born with a limb deficiency. Sadly sometimes families like mine, don't get to take their little miracle home. There is now a variety of support groups for families that experience limb deficiency. CHILD provide support to parents when they find out about their newborns limb differences. The deficiency can be diagnosed through ultrasound or after birth of the child. Also if the limb loss was acquired through surgical amputation. Through their extensive network of members from throughout the world, the parents never fall short of someone to talk to. This is a beautiful thing! What a difference time can make.

I was honoured to make some very special friends along the way. My CHILD friends are still an important part of my life. I'm honoured that they still involve me in their community and feel blessed to see a small glimpse into their world. I often wonder what our lives would be like if Yasminah was here. If she had of had a chance to the live the life that we dreamed of her having. The child we had, but never had and yet will have forever!

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