My Child Has A Hand Difference

My ultrasounds did not pick up any abnormality. Immediately after Phoebe’s birth her condition was detected. Hospital staff were not particularly helpful – obstetrician and midwife had never seen it before and didn’t really know what to say to us.

A paediatrician consulted my husband and I in the first hour after the birth and he was excellent. He diagnosed it straight away as Symbrachydactyly and was very positive and said that Phoebe could have some corrective surgery for the webbing which would have a good functional and cosmetic outcome. The paediatrician was also very reassuring that Phoebe would be able to manage tasks in life and would not be horribly adversely affected which was a big help in those first immediate hours after the birth. The paediatrician also confirmed that the cause was not genetic (a worry for me as I was an “older”mother!) – he also stated that it was not hereditary and would not be passed on by Phoebe to subsequent generations. Not sure how we would have gone with someone with less knowledge and positivity?

The paediatrician immediately wrote us a referral to see a hand surgeon whom we visited at 6 weeks. In the interim I googled a few overseas hospital sites for medical information on how they might operate and what the results might look like.

When visiting the hand surgeon I found he was quite busy and I did not get a good first impression, however he did give us a copy of the Aussie Hands brochure at the time and suggested that we make contact with them as he had heard very positive feedback about the organisation.

We sent in our membership application to Aussie Hands. I received a very supportive phone call straight away (can still remember it in my head like it was yesterday!) which was a great introduction – not at all pushy if we didn’t want to attend events but an open door for questions/moral support. It really just helped us a great deal to know that there was a Melbourne-based group that had so many kids (same age as Phoebe or a bit older) that had a hand difference. I feel like we are so fortunate to have lots of families ahead of us on the journey that I can chat to.

We returned to our GP for a new referral and I also asked Aussie Hands for other recommendations – coincidentally both our GP and Aussie Hands mentioned the same surgeon for Phoebe. We met him and were immediately reassured that we had found a great surgeon to place our trust in.

We are now active members in Aussie Hands as it helps us connect with others who have similar challenges but also because it is just a lovely group of people!

Here are some answers to questions I’ve had myself as a parent of a child with a hand difference.

Which surgeon should we choose to operate on our child?

In our experience we felt we had enough medical information to make appropriate treatment decisions but I found it really hard to choose the surgeon as there was no list. The fact that Chris Coombs had operated on many of the Aussie Hands community members was a good enough recommendation for us.

How much do I need to disclose about Phoebe’s hand for childcare/kinder/school enrolments?

As Phoebe’s hand difference does not hinder her play/activity levels at all I am never sure whether to formally document on enrolment forms the condition or whether verbal discussions with staff are enough?.

Should we formally tell her school peer group about her hand difference or let it evolve naturally?

It seems that the primary school system has made great improvements in implementing programs to teach kids to embrace differences in each other (whatever that may be) so do we just encourage her to respond to kid’s curiosity and answer questions?

Where can parents source modified gloves?

A bit of an odd one I know but Phoebe’s hands were always so cold so my mother knew a woman who was great at knitting. She traced an outline of Phoebe’s hands and modified a knitting pattern to make her customised gloves.