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!

Guest Post ~ Children Having Infant Limb Deficiency ~ CHILD ~ Katherine Moffett

This is my very first guest blog, of what I hope will be many more. My dear friend Katherine Moffett. I will always remember when we first found each other online, I was about 25 weeks pregnant with Yasminah. It was so wonderful to find someone who also had a child with a congenital limb difference. It gave me hope that everything would be OK and it didn't matter that Yasminah had a limb difference, she would still be able to do amazing things and would always have the support and strength of her family and friends. I still remember when I had to tell Kath she had passed away :( It was heartbreaking as she had offered to pass along some of Sienna's clothes. I knew even before I had Yasminah that I wanted to help other families in some way. Katherine was the person that helped me get all the paperwork and charity started as she had only recently done it for CHILD. Thank you Kath for being the most amazing, supportive friend a girl could ever hope for. I will continue to help with CHILD wherever I can as it will always have a place close to my heart and all the amazing friendships with the many different CHILD families I have made along the way. Don't forget that you are amazing and the person who inspired me to start something in Yasminah's memory, for that I will always be grateful ♥ Bec x x


This was Katherine's post on our Facebook page last week

Katherine

I was sitting here thinking about the past three and a half years for me. All the amazing people who have touched my life thus far. Rebecca and I met after she found out about Yasminah's differences as I run Children Having Infant Limb Deficiency - CHILD. We spoke here and there, I would try and shed light on the situation because I don't like parents thinking their alone when something like this i...s diagnosed. I remember when I found out about Yasminahs passing. I was sitting in my loungeroom in Prestons, Sydney. And I read a message Rebecca had sent me. I started to cry. She was the first little baby Id had the honour of being involved with who had lost her life. So when time went on and Rebecca said she wanted to start Yasminahs Gift of Hope, I was more than happy to help with whatever I could and I'm sure you remember Rebecca, the paperwork was a nightmere LOL....But Id just like to express my absolute love and admiration for one of my closest friends Rebecca Aziz. I have the utmost respect for her and all the work she puts in. Literally! Blood sweat and tears!! She is why I still do what I do, she is my inspiration. When my ex husband left me because we had a child born with disabilities it was my friends who picked me up and who encouraged me. In the last week alone, Rebecca has helped me so much, twitter, the blog, I just cant express how important you are to all of us Bec and I pray that a big tycoon with millions of dollars comes up and says "Here love, $1,000,000 to make a difference"! Love you xxx

Pregnancy can best be described as riding a very intense rollercoaster of emotions. Some days your up, others your way down. Other times you feel like your going around in circles and the weeks and months will never end.

But once labour is over, or the caesarean section is complete and your holding your newborn for the very first time, touching her soft skin, adoring her face, it all seems worth it. Picturesque isn’t it? Sounds perfect. Well the fact of the matter is, it’s not always like this.

This is her story, it is one of extreme lows, mounting highs and all the in-between.

Siennas pregnancy seemed normal. Besides some crazy dreams about her being born with dwarfism, a reoccurring dream I had at least five times and some bouts of anxiety my pregnancy was what I would call perfect.

Ultrasounds out of the way, we were told the baby was healthy, ten fingers, ten toes, I was content and anxious to meet my little bundle. When she was born though she was whisked away to the Neonatal Intensive Care Unit of the Hospital. I saw her for one minute after she was born and she was tightly wrapped, so tight in fact I could not unwrap her blankets and any attempts to do so were squashed.

Three hours after her birth, the news was broken to me that my perfect little girl, with ten fingers, ten toes and a button nose, wasn’t in fact what I'd expected. I was confronted with a very little baby, her arms were significantly different lengths, her shoulder on the right was smaller than the left, her right elbow was fused and could not be bend and the biggest shock of all, she had no thumbs. Eight little fingers is all she had. She had major upper limb issues, a heart condition and scoliosis of the hips.
The weeks and months that followed were tough, trying to adjust to life with a child with such different needs to what I would have called back then a normal baby.

My marriage broke down. The stress was all too much and I found myself attending the hospital appointments alone, dragging a three year old with one hand while trying to push a pram with the other.

Over the past three and a half years, I’ve tried to make Siennas life as normal as possible. She never misses out. She is always involved. Never left behind is my family motto. We have all pitched in to make sure my children’s lives are as unaffected by all of this as possible.

But what do you do when a child, who is around seven years old, decides to point out that he thinks your pride and joy, your little princess, is a “freak” and is “scary”. How would you deal with this? It’s so easy to dish out advice to other parents about how to handle things like this but when it actually happens to you, it hits you like a ton of bricks.

My answer, educate the community. Teach your child that staring at someone who has a disability, or any difference is not polite. Calling someone a freak, scary, ugly, fat, four eyes, none of it is right. Sticks and stones may break my bones, but I’m telling you words do hurt. How can I protect my daughter from the big bad world when all I want to do is hide her away and protect her? I’m asking parents all over the world, to do what’s right and educate your children. Teach them what is right from wrong. My daughter didn’t ask for this. She didn’t ask to be born like this. Lately she has been asking me why she can't have ten fingers like mummy. And also why she has to keep going back to the hospital.

I am now the sole parent to three amazing children. All of whom adore and love each other unconditionally. They are all protective and respectful of each other.
Please, help me make the world an easier place for children like my daughter to feel safe and not judged because of their physical appearance. Bullying is wrong! Teasing is wrong! Poking, prodding and pushing are wrong whether the person is disabled or not!

I'm doing my best to educate the world. I started a charity in 2009 called CHILD. Children Having Infant Limb Deficiency. To date I have made contact with over 500 families from all over the world whose child has either been born with a limb difference or has an acquired limb difference (amputee). Our children are all amazing human beings. And I am trying to help them get the confidence they need to face the world loud and proud!


I’m normally a very calm and placid woman but I need to stand up and fight for the rights of my daughter now and those of other children with any type of disability. Bullying is wrong; educate yourselves and your loved ones. Bullying is ignorance and I for one will not tolerate it anymore.

Katherine Moffett

To learn more about CHILD and support Katherine's work please visit www.childorg.net.au and follow them on Facebook