My Child Has A Hand Difference
My story outlines the steps, links, avenues, questions, conversations and resources after I discovered my daughter was born with a hand difference.
Cassie’s hand and arm differences were not detected prior to birth.
When she was born we got a surprise. We were looking at this beautiful little girl in the delivery room and together as parents we discovered that she didn’t have any thumbs. We informed the midwives who had helped deliver her. They couldn’t tell us much but the paediatrician was about to start the morning round so he came to see us first. He did a full inspection of her, looking at all limbs and digits. The only visible difference she had was short forearms and no thumbs. He informed us that she may have a syndrome of some sort which needed further investigation. Problems with the heart and kidneys are sometimes associated with thumb differences so she needed to have an echocardiogram and an ultrasound. The day she was born was a whirlwind with wheeling our tiny baby girl around the hospital getting tests. We even saw the same sonographer who did one of her pregnancy scans. He went back through her in-utero images to check if he had missed anything. He still couldn’t see any evidence from the stills. Fortunately the imaging of her internal organs showed no abnormalities. I think it was the afternoon before we even told our families that she had been born. She was our second baby and it was so different from our first baby. We were relieved she had no further ‘issues’ but still shocked and had so many questions. What was the cause of this? Did we do something wrong? What will the impacts be for her as she grows up? The paediatrician indicated that she would be referred to clinics at the Royal Children’s Hospital in Melbourne, for further follow up. We lived near Ballarat at the time (Ballarat is a large Victorian country town 2 hours north-west of Melbourne). He indicated that the road ahead may be long and challenging.
The Ballarat Base Hospital were terrific during the postnatal phase. I had given birth in the family-birthing centre which is a more relaxed environment and they allowed us to stay there for the duration of my hospital stay. Both my husband and I received automatic referral to a counsellor. The counselling was very valuable. The counsellor let us know that it is normal to have feelings of grief when a child with differences is born. We received some funded home help also through the hospital in the weeks following Cassie’s birth. That took some pressure off as I also had a toddler. The home-helper was also terrific and we kept her as a cleaner for years afterwards.
It was very difficult at first to tell our family and friends about our daughter’s difference. We decided to tell our close family directly but then just let others know as we saw fit. We didn’t think it was appropriate to announce that our daughter had different hands and arms. People’s reactions varied. My mother in-law was very matter of fact saying “don’t worry, modern medicine is wonderful these days”. My parents were overseas and they came home early when they found out. When they came to visit for the first time we all cried together. I found that I cried very easily when she was a newborn. I remember crying when I learned the medical terms for her condition (bilateral radial dysplasia and absent thumbs). A friend gave me a card that had a baby’s hands on it and even that made me cry. It’s funny looking back on the grief now. I felt guilty for crying at the time, but now I think it was very healthy and a way of recognising that things can be different from what you expect. I was also sad for the difficulties that my daughter would probably face in her future.
We had a series of appointments in amongst the fog of babyhood. Some in Ballarat, with the paediatrician following up after birth, extra ones with our GP, new appointments in Melbourne at the Royal Children’s Hospital (RCH). I can’t remember the full order but it felt like we saw a lot of professionals in the first couple of years after birth. These included: GP (local in Creswick), Paediatrician (Ballarat), hand surgeon (RCH), hand OT (RCH), genetics specialist (RCH country clinic).
The hand surgeon at the RCH was brilliant. He made a call very early on that she was a good candidate for pollicisation surgery (turning an index finger into a thumb). At first I didn’t like the idea of ‘changing’ our daughter. What about scaring? What if the surgery was unsuccessful? What would she think about her hands when she got older? It turned out by chance that the OT at RCH, (now retired) was a personal friend of my mother in law. We had even met her before. We got in touch with her and she gave us some help information and resources relating to pollicisation. She also explained how an opposable digit is used in a large proportion of hand functions and that pollicisation surgery is generally quite successful. With the information from both the OT and RCH hand surgeon, and encouragement from our families (we have health/biological science professionals on both sides) we made a decision to go ahead with the surgery.
Cassie had her right had pollicised at about 10 months of age. The surgery took about 3hours. It was a long wait. The surgery was a success and the hand surgeon was very happy with the outcome. She had a tiny little pink thumb poking out of the enormous plaster cast. Follow up from the surgery was intense over several weeks. Many dressing changes and casts were gone through, along with trips to Melbourne. The hand surgeon was always very happy with the outcome though and this made us very pleased!
When Cassie was 22 months she had the same procedure done on her left hand. It wasn’t so nerve wracking the second time. When she flung her cast off leaving her delicate new thumb with no covering or protection after only a fortnight we got a little scare, but she was an active toddler. We got a new cast and all was ok. Follow up with dressings and casts was arduous again but the RCH OT was a champion, sewing her tiny little pink gloves with glitter with splints inside to hold her hand in a favourable position.
Both the right and left pollicisation were successful and she scored well.
Cassie had some genetic testing to see if her condition might be hereditary. The doctors thought it might be as she had the difference on both her right and left side. Her DNA was tested for a couple of different syndrome markers but these were negative. We still don’t know for sure if her own children might inherit this difference. We are hoping that before she reaches the age where she wants to have children the technology will exist to be able to do a full DNA scan for any abnormalities. This way she can be fully informed.
Cassie has been seeing an orthopaedic surgeon at RCH for a review every year with the idea of exploring options for limb lengthening and/or straightening. It looks unlikely that she will have any limb surgery but we will continue to revisit this idea just in case any developments in limb surgery occur or evidence becomes available to suggest otherwise. Cassie does have short arms and the main concern with this as she grows older is for her to have independence with toileting. She can just reach for wiping and cleaning so this is looking promising.
As a baby, toddler and pre-schooler, Cassie progressed through the usual developmental stages. She didn’t crawl ‘normally’, she did a bum shuffle, and when she was learning to walk she sometimes hit her face on the ground if the fell as her arms were too short to adequately cushion her fall. Otherwise she wanted to do active play, engage with toys and other kids like any child.
In the year before starting school I re-engaged with another OT (in her private practice) to get some advice about hand writing, advice for teachers, and aides she might need etc. The OT wrote a fabulous report that we were able to give to the school that explained Cassie’s differences and the impacts it may have on different aspects of school life. She recommended some pencil grips and a sloped writing board to assist her.
Since then Cassie has not had a hiccup. Her writing is fine. She no longer uses and pencil grip, but we do favour triangular profile pens and pencils. She tries her hardest to do the monkey bars and succeeds in her own way, hooking her forearms back towards herself. She can ride a bike. We had a set of touring handlebars put on her bike and brought the seat and handlebars as close together as possible.
I find that it can take time to find solutions for Cassie for certain things, but solutions are there to be found. I sometimes feel frustrated that as her parents we have the extra responsibility of finding non-standard clothing and tools for her. I have found that there are tools and gadgets out there if I look hard enough. Many of them are on OT websites for the elderly. My dad made her a wooden tap turner, for using in the bathroom when the previous person has turned the tap off a little too firmly. I sometimes alter clothing for her (move the cuff up the sleeve) and I usually buy tops with elastic at the cuff rather than flared sleeves. We have learned to put certain domestic things in appropriate places so she can reach them. We also use things like a disability flick mixer in the kitchen, stools to reach higher things and the like.