My Child Has A Hand Difference
We are the Rosses and this is our journey thus far of being parents, and siblings, of a 6-month-old with symbrachydactyly.
Mum, Lisa, is a physiotherapist.
Dad, Adam, is a secondary school teacher.
Isabelle, 4, is an aspiring artist and ballerina.
Etta , 2, is a cheeky, determined stunt double.
Evelyn, 6 months, is our placid, adorable littlest addition who happens to also have a “lucky fin”.
Like many parents of a child born with a congenital limb difference, we only became aware of Evelyn’s unique hand in the birthing suite after a pretty standard pregnancy. We had all the routine scans: and, in our 20 week anatomy scan (2D) and a 38 week growth scan (3D), she just appeared to be making a fist.
After a tiring labour, whilst enjoying skin-to-skin with our newborn, Lisa pointed out that Evelyn seemed to be missing a few fingers. In the same sentence she pointed out that if was is all that is wrong with our baby, then she will be OK. This feeling has continued to prevail over the last 6 months.
On the occasion, when more sleep deprived than normal, that either of us feels overwhelmed or sad about the journey Evelyn and the family are on, we quickly remind ourselves to live in this moment, with this little girl that will manage to do EVERYTHING, albeit in a different way to others.
We chose to “announce” Evelyn’s birth to our family and friends privately at the time of her birth, and then on Facebook during Limb Difference Awareness Month (April). This was penned by Adam, with much thought and consideration.
Friday 19th January 2019 we welcomed into the world a tanned and dark haired exotica named Evelyn Grace weighing 3.01kg or 6lb10oz. After the beautiful birth we also discovered that fantastic Evie has a unique difference about her, with a mere thumb and no fingers on her left hand (known as symbrachydactyly). Issy and Etta over the moon and keen to share her and her little difference! Evelyn is a stunner and although she may not be a golfer when she grows up, neither is Dad. We are confident that she will still make either the AFLW or W-League drafts for 2036. @shaquem_griffin was just drafted in the NFL 🙌🏻 By then we are hoping for pay-parity and early retirement.
Our journey thus far has consisted of trying to find answers to what we now know as the unanswerable:
What would our journey look like?
What needed to be done?
Dr Google: Not ideal, however…
In the wee hours of the morning and days after the birth, we were trawling the internet searching for information. For most of the midwives and medical staff at our regional hospital this was the first newborn they had delivered with a limb difference. We felt as though they were not quite sure how to speak with us about this – so didn’t really say anything. Luckily for us we stumbled upon the “Lucky Fin Project” website and of course the Hands Australia website. Both of these have been invaluable resources for us and will continue to be in the future as new “challenges” and obstacles arise.
6 weeks old:
Initial appointment with a plastics microsurgeon in the “Hand Clinic” at the Royal Children’s Hospital in Melbourne.
Discussion regarding Evelyn’s condition and the potential surgical interventions versus no intervention. Our discussion with our surgeon did not provide us with a clear-cut answer – and to be truthful, there isn’t any one answer. Each family’s circumstances are different. Each child with a hand/limb difference is “different”. What we value and others value are also different. The options as put to us in the clinic were:
Option 1: Do nothing
Option 2: Transfer small bones from four toes into the four nubbins to provide some stability for gripping small objects.
Option 3: Transfer the second toe (next to the big toe) from both feet into the position of the 3/4 or 4/5 finger position to assist with grasping larger objects.
Option 4… Watch this space of evolving medical care!
The question Lisa (being a physio) had after this appointment was “what would the surgery allow Evelyn to do that she otherwise wouldn’t be able to?”
Adam wanted to know “from a wellbeing point of view, which option would be better?”
The best part of our day was meeting Julie from Aussie Hands for lunch following our appointment. Given our rurality, Julie made the effort to come and meet us while we were in her vicinity. We could not thank her enough for taking the time.
Our questions regarding Evelyn’s wellbeing immediately vanished. Evelyn has a limb difference, Julie has a limb difference – and that is all it is; a difference. We spent most of our time sharing unrelated stories over sub-par dumplings! Julie did however mention that she could put us in contact with families that had chosen to and chosen not to go ahead with surgery. (We haven’t yet taken this opportunity up, but will do further down the track). The OT’s may be more forthcoming with functional outcome information.
This led us to arrange an appointment with the RCH hands OT.
12 weeks old:
Meet with RCH OT to flesh out the pros and cons of surgical verses conservative management and likely functional outcomes. This appointment was a great opportunity for us to discuss Evelyn’s hand and likely functional prognosis with less time constraints than hand clinic.
We came out of the appointment with the following thoughts.
1) Evelyn will manage to do most things. They just may be a bit more difficult for her at times.
2) Surgery “may” make things easier for her from a functional perspective.
3) Surgery on a two to three-year-old will involve a 3 to 7 day hospital stay, 3 limbs in plaster for +/- 6 weeks.
4) The difficulty in deciding comes from needing to make a decision for someone else!
- d) There is no right answer.
Somewhere along the line:
You wouldn’t believe it, but we literally bumped into a family in our local park in Horsham with a four-year-old with the same limb difference as Evelyn. We were in a rush and exchanged names but were unable to find each other on Facebook. Luckily Horsham is a small town and our Maternal and Child Health Nurses arranged, with our consent, the exchange of phone numbers. We now bump into each other often and are catching up next week.
First day in daycare today!
Evelyn is rolling, loving tummy time, grasping objects with both hands, trying to crawl, trying to hold her milk and water bottle and just mastering sitting. She is doing everything every other six-month-old is doing. In the words of her sister Issy: “Mum, I don’t think we should put toes on her hand. She is perfect just the way she is!” This is the same daughter that cried because “I’m not lucky Mum, only Evie is lucky because she has a lucky fin.’’ And isn’t she one lucky girl to have sisters like hers!
We have a follow up RCH appointment for imaging and to discuss any other future potential options at 9 months of age. Apart from that, our family is busy planning for a year travelling through South East Asia and starting with celebrating Evelyn’s first birthday in Sri Lanka.
If you are interested in following our adventure you can find us at thesmalllane.com 🙂