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.