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Allison’s Story

My Child Has A Hand Difference

Indigo took her time coming. We finally conceived after 18 months of trying and two rounds of Clomid. When we found out I was pregnant, and especially after the long wait, it was one of the happiest times of our lives.

Indigo’s birth was textbook at a local birthing suite. I was on such a natural high I wasn’t even fazed by her ‘floppy’ thumb. I remembered in most of the ultrasounds she had been sucking that thumb and I assumed that was why it had not formed properly and thought it would be easily fixed. If only I knew what was to follow…..

I still question it to this day. But the midwives wrapped Indigo’s thumb up and sent us home, two hours after giving birth to our first child and told us to go to the GP the next day.

The next day a very surprised GP met Indigo. I still remember his concerned look and being sent straight to emergency at our local hospital.

Child Has A Hand Difference

That was when fear started to set in. I scuttled along as best I could. We were sent for an x-ray and referred to a hand specialist. It was the hand specialist that broke the news, very professionally and considerately, of thumb hypoplasia type IV.

The specialist then explained the pollicisation procedure. He also referred us to the childrens’ hospital to see a hand specialist there.

This is when we started Googling everything and going through all the thoughts and emotions of ‘why us’ and ‘what did I do wrong’ etc. etc.

It was the hand specialist that broke the news, very professionally and considerately, of thumb hypoplasia type IV.

We couldn’t stop staring at people’s hands and it also made us question what else was wrong with her.

Amazingly, it was up to me to request a paediatrician referral and from there we were sent to a heart specialist because sometimes people with hand differences have other complications, including heart issues. We were also referred to a geneticist and had lots of x-rays and blood tests. It was a difficult time having to be at so many different appointments with a newborn and not really knowing what we were doing. Luckily Indigo was such a good baby and somehow we got through it together.

The whole time I was obsessed with finding a miracle. I could not accept that pollicisation surgery was the only and best option. I researched stem cell technology and we flew interstate to a hand surgeon, who was involved in stem cell research. I contacted people overseas who were growing finger tips and looked through hospital research projects to see if there was anything new in the pipeline. I guess our biggest fear was that there would be a breakthrough and her thumb could have been saved. In the end we were satisfied that wouldn’t happen and gradually came to realise that pollicisation is a miracle in itself.

I am glad we had time to process things before Indigo’s surgery but it was an ongoing underlying stress until we received the notice that the surgery would go ahead when Indigo was 2.3-years-old.

In the meantime, I fell pregnant with our very spirited second child, Zoe. I definitely felt the fear throughout my second pregnancy but Zoe was born without any complications – except that she didn’t like sleeping!

Having Zoe made me realise exactly how much we had been through as new parents to Indigo, with all the medical appointments we attended in those first few months.

Surgery day was hard and traumatic for us all, as was the follow-up care and appointments afterwards. We felt very alone at the hospital and I believe somewhere along the line we probably should have been offered counselling.

The most helpful things along the way for us were our very kind paediatrician who put us in contact with a local family who had gone through the same procedure.

Our hand therapist was so down to earth and full of information. She even gave us her contact details over the Christmas break in case anything went wrong after the surgery.

The Aussie Hands website and stories gave me such strength and hope when I needed it – and I still revisit them when I need to.

Indigo is nearly four now and has always been older than her years. She is sensitive but strong, vibrant and assertive. She noticed her hand difference around three-and-a-half years old and began saying she didn’t like it and wanted her other thumb back.

We showed her photos and talked about how she needed her thumb to pick things up. Now she counts her fingers in a matter of fact way and says ‘four on this hand and five on this hand’!

I realise how lucky we are. Indigo loves hand therapy and the crocodile playground at the hospital. I feel stronger and more compassionate and my hope is that Indigo grows to embrace her uniqueness, just like we do.