My Child Has A Hand Difference
My name is Malindah. My family live in Launceston, Tasmania and consists of myself, 30, my children Cooper, 6, and Quinn, 2, and their father Chris 34.
Quinn has a congenital upper-limb difference of the left hand referred to by the surgeon as symbrachydactyly.
Chris and I found out about Quinn’s hand difference at our 20-week morphology scan where we were told by the sonographer that it appeared our daughter had no fingers on her left hand. Upon further inspection by a doctor at the facility, it was confirmed that she had the bones in her palm and a rudimentary thumb but nothing that would suggest she had fingers on that hand. They also mentioned that as they were unable to get good images of her heart chambers, that they were unsure as to whether this was an isolated event or linked to a condition or syndrome. We were then referred to another sonographer and advised to get an amniocentesis.
Those two weeks between the scans were extremely hard for us, not knowing what situation we were facing. The fear of the unknown and the mistake of over-Googling!!
Once at the gynaecologist, we opted to have the scan first and then decide on the amniocentesis after seeing her organs. This was the best decision we ever made. They advised us that all her organs were healthy and as far as they could tell it was an isolated condition. They showed us her gorgeous little face and her beautiful little hands using the 4D scan option. She was the most amazing thing we’d ever seen. We chose against the amniocentesis after such positive results.
Our greatest fear, both at the time of finding out and now, is the reaction of other people and children throughout her life. She is the funniest and most charismatic two-year-old I’ve ever met. She draws people to her wherever she goes, so I feel like she will be fine with people and their reactions to her – which so far have been nothing but positive.
Our greatest fear, both at the time of finding out and now, is the reaction of other people and children throughout her life. She is the funniest and most charismatic two-year-old I’ve ever met. She draws people to her wherever she goes, so I feel like she will be fine with people and their reactions to her – which so far have been nothing but positive.
We were referred to a paediatrician at our local hospital to follow her progress through infancy, as well as an occupational therapist. She was a little behind with typical milestones to begin with, as a lot of those “milestones” involve passing things between hands and other hand-related activities, which of course she wouldn’t be doing. However, by 14 months she was discharged from both services as she was up to speed and developing amazingly.
We were also referred to the Royal Children’s Hospital in Melbourne to speak with a hand surgeon about surgical options. We were given a couple of options including second toe transfer and a thumb bone graft. These were suggested to create a pincer grip for her. It took a lot of deliberation. In fact, she was on a waitlist for over 12 months before we decided against the surgery for now. She can do most things that her older brother does and uses her left hand to do more than we had ever expected. If she ever decides she wants surgical intervention then we will let that be her decision.
Quinn started day care in 2018 and loves it. She is well liked among her peers and has been described by her educator as ‘very assertive’. She loves being silly to get a laugh and whenever she is upset, food is a sure-fire way to cheer her up – just like her Mum!
As she is only two at the moment, we haven’t really had to mention much about her hand. About six months ago we saw she started noticing the differences between her hands, holding them up in front of her face and wiggling the fingers on her right hand. She has also started getting frustrated when not being able to carry things with her left hand but she eventually figures out her own way of doing it.
We haven’t had many comments about her hand difference from strangers. Many people say they don’t even notice it until they really interact with her. We’ve had cute and funny comments from children of family friends such as “Have Quinn’s fingers grown yet?” or when in the presence of a baby with ten fingers asking “Why does this baby have all its fingers?”. Children really prove to us that “normal” is relative! We’ve also found that Quinn’s limb difference has helped Cooper understand that everybody is different and has made him less ‘curious’ or judgemental about anyone who is a little bit different to him.
The hardest thing for me was the way people would silently react to her left hand. I noticed that people would coo over her and reach for her hand, as people do with babies, then awkwardly pull away. That was heartbreaking. When venting over this to a friend, it was suggested to me that perhaps people weren’t sure as to whether her hand may have caused her pain or be sensitive so they may not have wanted to touch it so as to not potentially hurt her.
We learnt of Aussie Hands at our first appointment with the hand surgeon. He gave us a brochure and we immediately signed up and joined the Facebook group. It was so amazing seeing other beautiful babies, children and even adults who were doing superbly with their limb differences.
We know that our Quinn will do anything and everything she wishes. We attended an Aussie Hands Christmas picnic in Hobart in 2016. Although Quinn was only about 6 months old, it was still so beneficial for us as parents. It was the first time that someone unrelated to Quinn touched her hand with no reservation or fear. This warmed my heart. It was like we had found our people; people who understood us and who understood Quinn. Unfortunately we haven’t been able to make it to an event since but will be attending the 2018 Christmas BBQ in Launceston and we’re looking very forward to catching up with everyone!
It was the first time that someone unrelated to Quinn touched her hand with no reservation or fear. This warmed my heart. It was like we had found our people; people who understood us and who understood Quinn.