More To Love - My Polydactyl Family

You weren’t imagining things. You did just count six toes in the above picture. Our youngest son and only daughter were both born with polydactyly...6 fingers and 6 toes.

Our Firstborn

We were not too surprised 7 years ago when our daughter was born and we learned right there in our hospital room that she had 24 digits total. There she was lying there with her curled up toes and balled up fist, our perfect little bundle with ‘More to Love’. That was our saying that not only were we blessed with a baby but there was more of her to Love than we expected.

What is Polydactyly?

The reason we were not surprised about our daughter’s condition was because my husband was also born with polydactyly. Polydactyly is when a person or animal is born with more than five fingers or toes on one or on each hand or foot. My husband only had one extra finger on each hand but no extra toes as our children did. The gene in polydactyly is so dominant that a child has a fifty percent change of inheriting it if only one parent carries the trait. This gene is not sexed-linked meaning males and females can inherit it equally. African Americans are more likely to inherit this condition more than any other ethnic race.

There are different degrees of severity which fall into three categories:

1. skin, and soft tissue which is the easiest to remove
2. skin, soft tissue and bone with no joint which is more difficult to remove
3. skin, soft tissue and bone with joint which is the most difficult to remove and the most rare case

Family History

As mentioned above my husband was born with polydactyly. His father carries the gene. My husband was the first born in his family. Then my sister-in-law whom was next born also inherited it. There were two more siblings born after her and neither of them inherited polydactyly. Those three with the condition fell into the #1 category from above. With only skin and soft tissue the doctor was able to tie them off before leaving the hospital. When this tissue is tied off it first turns blue then eventually overtime it turns black and falls off on it’s own.

In our family we had four children. After our daughter was born we had two more boys who did not inherit it. Then we had our youngest son inherit it. We were once told that in most cases only the firstborn child will inherit but as you can see this is not our case. Both our son and daughter were born with category #3 polydactyly. Their extra digits are not functional meaning they can not move them around as they can their regular digits. Also the extra fingers on their hands have remained the same size since they were born.

Complications with Category #3

When our daughter was 6 months old an orthopedic surgeon told us she would have to be put to sleep with general anesthesia in order to have surgery to remove her extra digits. We did not like the sound of our little baby being put under especially because it wasn’t a life or death situation but more cosmetic. We opted out at that time and decided to revisit our options later.

When she turned five she began complaining about pains in her hands and feet. She would drop to the floor and scream

it’s hurting!!!

Shortly after those episodes she began to feel the same type of pains in her hands. We even saw her bones pop out of place between her pinky and extra digit. Thank goodness it corrected itself and popped back into place. We knew then we had to do something about this.

We decided to have all of her extra digits removed at once. We learned through X-rays that each of her extra digits on her feet shard a bone with the last digits. Some of that shared bone had to be shaved off and removed with the extra digit. The surgeon explained that the pain she was experiencing was normal due to the shared bones and as she grows those bones and joints grow as well.

Our daughter was excited about surgery for a few reasons. She didn’t want to go through that pain any more, she would be able to shop at other stores (we only shopped at Stride Rite since they carried a size extra wide) and she would be able to wear heels now one day :)

The Surgery

The pictures in this post are of our son. My daughter is not comfortable with the world knowing what her hands and feet used to look like. I honor her wishes and never show those pictures of her past. The pictures you see below are on the day of her surgery.

She was in a really good mood that day!

We were all very nervous on surgery day. This was the first and only time any of our children had to be put to sleep for surgery. As she walked down the hall with the surgeon to prep for surgery she started to cry. She realized that we would not be able to be with her in the operating room. I began to cry and kept praying that everything would go smoothly.

Surgery lasted for about three hours and it was a success! We were aware of a long recovery ahead of us. Normally recovery for this type of surgery would take 6-8 weeks but we were told to expect a longer one due to the shaved bones. Our daughter was literally immobile with casts on both her hands and feet.

Of course she picked the brightest color!

It really was a rough recovery for her. She would wake up in the middle of the night screaming about the after pains and the itch under the casts! We didn’t get much sleep for those 8+ weeks but all that mattered was a successful recovery and doing our best to help her be as comfortable as possible.

As of today she is doing just fine. You can barely see the marks of surgery and everything looks normal. She enjoys shopping at other shoe stores and she does not miss her extras. She doesn’t have as many pain episodes as she used to but twice a month they do reappear lasting for a few moments. We are not sure if these pains will ever go away completely.

Decisions Regarding our Son

I’m sure you’re wondering if we will choose to have our son go through surgery as well. After all of the pain we witnessed our daughter go through and the emotional roller coaster we rode we have decided not to get surgery done for him unless he starts to have problems. When he is old enough we will let him decide whether to remove or keep his extra digits. Until then and for now we will continue to Love every part of him because there is more of him to love. ~

Thank you for taking time out to learn more about my family. Was this information about polydactyly new to anyone? Do any of you know someone that has this condition? I would love to chat. Please leave your comments or questions below before you leave :)

All photos are my own and were taken by me.