GUEST POST — Norah’s Polydactyly Story

So happy to have Mama Stephanie sharing her daughter, Norah’s story today!

My daughter, Norah, was born in the summer of 2014. She had a head full of dark hair and was absolutely beautiful! Within a few minutes of being delivered, the doctor announced that she had a double thumb on her left hand. To say my husband and I were surprised is an understatement. We live in a small town in the midwest and honestly, no one really had any answers for us, so we left the hospital pretty confused. She was perfectly healthy otherwise, and this seemed to be purely cosmetic, but we were also aware of the future challenges she may face and wanted as much information as possible. 

I did some research online and we talked with a surgeon friend of ours, who saw her, and then referred us to a local hand specialist. The specialist gave us all the information we needed on polydactyly and assigned her specific case a Wassel type (she was type VII because of an extra small bone). We were told of a reconstruction surgery that was possible, however our specialist did not have the experience in performing it, so he referred us on to the Mayo Clinic. We absolutely loved the doctor at Mayo (Dr. Moran). He was encouraging, so kind and respectful, and had done many surgeries on all types of polydactyly. He asked us first to get a CT scan of her kidneys since those organs form at the same time as the thumbs and he wanted to check for any further, or hidden, complications. Luckily, everything came back normal. Norah was 9 months old at the time, and the doctor said he was comfortable doing the surgery at any point, so we chose September so she could avoid being in a cast during the hot summer. 

September rolled around and Norah was 13 months old when she had surgery. Everything went smoothly and she came out of anesthesia wonderfully so we were able to go home that afternoon. A couple notes about her surgery; because of the extra small bone in her thumb, there were a couple ways to perform the surgery to get the best usability for her. She will essentially “grow into” her thumb. There is some extra tissue at the top which will hopefully even out as she gets bigger. She is able to use her thumb now to pinch and grasp things, in fact she uses is without much issue at all, but she does not have the ability to bend it. The doctor wants to monitor her each year for the foreseeable future to make sure her thumb does not bend inwards too much. If it does, she can have another surgery to correct that down the road. Her nail is also very small on her new reconstructed thumb and he mentioned that could be corrected as she grows as well (who knew?!). Norah wore her pink cast for 4 weeks and did great with it. Taking the cast off went just as smoothly and the doctor was impressed with her ability to simply start using her hand and thumb without any issues.  

I’m happy we went ahead with the surgery, as scary and confusing of a decision as it was. She is happy and healthy and knows no difference right now, but I hope it teaches her to be more loving and accepting of others as she grows. She’s already taught us more than she will ever realize. 

Read more about some of the cutest kiddos and their polydactyly stories here! And, if your child was born with polydactyly and you’d like to share your story, just send me an email – thatmamagretchen@gmail.com