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Can hand differences be detected in utero?

Hand differences are sometimes detected in typical scans which occur during pregnancy, usually at around 20 weeks. However, it is very common for hand differences to not be detected prior to birth. Some mums tell us that they had numerous scans due to other concerns and none of them picked up that their child would be born with a hand difference.

Hearing that your unborn child will have a hand difference can be hard news to hear. Sometimes, the medical professional who detects the hand difference doesn’t have extensive knowledge of such conditions which adds to the distress. And it is common to be given sketchy information. So medical professionals can detect a hand difference but cannot be specific (e.g. whether the child is missing an arm from the wrist or from the elbow). However, in the majority of cases, the hand difference is an isolated health condition.

When hand difference is detected prior to birth, parents are often referred to health professionals such as genetic counsellors. It is important to note that hand conditions with genetic origin only represent a small minority of cases. Around this time many parents have told us that they are offered abortions which added to their stress and confusion during an already-stressful time.

Emotions after finding out your unborn child will have a hand difference

Finding out that your unborn child will have a hand difference can be upsetting. It is okay and totally normal to feel overwhelmed and emotional. You may not have met a person who has a hand difference before and wonder what this will mean for your child.

Parents tell us that when they learnt of their child’s hand difference, they worried about the quality of their child’s life compared to children. They asked themselves things like: will my child be able to do things like ride a bike? Will they be bullied at school? How happy will they be?

Here at Aussie Hands, we feel it is really important for parents to take as much time as they need to absorb the news. We understand that it is valid and important for parents to have time and permission to grieve. Whatever your situation, please call us when you are ready: we are always happy to hear your concerns, answer your questions and provide you with information that might help relieve your fears. Some of us have hand differences ourselves and we can connect you with other parents in the Aussie Hands community who have been on the same journey.

Do I tell my family and friends before or after the birth?

It is a totally personal decision when you tell your family, friends and acquaintances that your child will be born with a hand difference. Many parents have told us that they found it helpful to take some time out to process the news and find as much information as they can before sharing the news. Take your time and do not feel the pressure to stick to specific timeline. We have had some parents tell us that they told close family and friends first, people they knew who would support them unconditionally.

How have other parents coped with the news that their child will be born with a hand difference?

“Believe me when I say every worry, bad thought completely goes out the window when you see your baby. Trust me! And as the months go by and you watch your beautiful child achieve every milestone you will realize they can do anything”. (Tess, Aussie Hands Mum)

“Found out at 20 weeks and as soon I got to see our beautiful girl all those thoughts and worries went away. Now she is 4 months old and she surprises us everyday with new things she can do. I remember the Aussie Hands community telling me this also and I hoped it was true, and I can guarantee it is. Plus we have such supportive friends and family who love Zarah too. I believe this group helped me a lot and couldn’t have got through my pregnancy without them. Talk, talk, talk as much as you can and ask all the questions”. (Jodie, Aussie Hands Mum)

“Telling family and friends during my pregnancy with Zac was I have to say a tough thing given at the time I was still processing. So the Aussie Hands family helped me learn more and find out that in fact he would be just fine!! I didn’t have any odd reactions as I just matter of fact said he is absolutely perfect but his left hand just didn’t grow, and it’s just an isolated thing that can happen. Zac is now the love of everyone’s life and there is nothing he can’t do!!

He starts prep tomorrow and is a well adjusted, happy and confident little fella who when asking a question at the prep orientation day proudly waves his little arm in the air (of course he is a leftie…without the hand, but we see this as a good thing). The sky is the limit” (Louise, Aussie Hands Mum)