A snowflake is designed with the utmost splendor. There is not another that is the same. Likewise, each child is so very beautifully different from one another, both inside and outside.
This post is a special piece of my heart as I am about to share with you about someone very dear to me — my four year old daughter, Sugar and Spice, who was born with only three fingers on her right hand. Parenthood is a journey, and in many instances, there are plenty of surprises. Whenever there are medical complications or birth defects, you are bound to have more. Every parent only wants the best for their children, and our story is no different. In the 12 years that I have been an Early Childhood teacher, I have come to know that there are so many children who are not born “perfectly.” Whether you are a parent of a child with vision issues, a heart defect, a sacral dimple, cleft lip/palate, or any other condition, I want you to know that this is more common than people talk about! There is no need for you to feel ashamed or to blame yourself. I invite you to embrace the beauty of this difference and to feel comfort in knowing that your hardships and heartbreaks are shared by other loving parents. We are not alone, and I hope you find encouragement in reading through our own story.
There are some moments of motherhood that will never leave me. Many of them are wonderful, but there are also the painful ones. One in particular was after my children had finished a photo shoot in a department store. As the photographer was putting together the photos and dressing them up, she asked me what I thought of one. It included the text “10 Perfect Fingers, 10 Perfect Toes.” I was taken back that she would choose this! Several thoughts raced through my mind: Did the photographer not really see my daughter’s hand? Is this something they put on everyone’s pictures? Did she really just put “10 perfect fingers” under a picture of a child with only eight fingers?!?! After a few moments, which felt like a few minutes, I decided to simply respond by saying “This does not apply to our daughter, so I don’t think that poem works for us.” These sorts of instances do not occur daily, but just often enough to remind me that our journey through Symbrachydactyly certainly makes life a little more tricky.
“Symbrachydactyly (sim-brak″e-dak´tĭ-le) occurs during normal embryonic development, the hand initially forms in the shape of a paddle, and then eventually splits into separate fingers. Symbrachydactyly results when one or more fingers fail to form properly during this time. This hand disorder characterized by abnormally short fingers that are sometimes webbed or conjoined. Most children with symbrachydactyly have the “short finger” type in which the thumb is essentially normal but the remaining fingers are short, stiff and may be webbed. In other cases, only the thumb or the thumb and little finger are present. In more severe cases, all fingers are missing and small nubbins of skin and soft-tissue (little stumps) are located where the fingers would have developed. Research continues into further understanding why this happens.”
This beautifully worded explanation of my daughter’s limb difference comes from an organization called the Lucky Fin Project. It is a non-profit program dedicated to providing support for families who are affected by Smbrachydactyly. This limb difference occurs in every 30,000 to 40,000 births. It is not anything caused by an action of a pregnant mother — it just happens.
The First Time We Found Out
While pregnant, my husband and I had no idea that anything was different about our daughter. We had several ultrasounds, and nothing abnormal was ever noticed. The first time we realized that our daughter had eight fingers was right after her birth. There is certainly nothing we would have done differently had we known about it beforehand, but it probably would have made the first moment we met her a little more smooth.
I wish I could say that we found out about our daughter’s hand in the most delicate and tender way. Instead, our nurse apparently did not have the best bedside manner, or she had forgotten that although she sees babies born with different medical conditions on a regular basis, this was our first child. She handed me my sweet baby girl, and while I was expecting to hear “Here’s your darling daughter,” instead I was told “She only has three fingers.” While I can appreciate that she didn’t leave me “in the dark” for a single second, it would have been nice to just have a moment to cherish my daughter, look into her eyes, and just soak her in. Instead of spending the first moment of my daughter’s life with pure absolute bliss, it was clouded by an abrupt medical diagnosis about what she was lacking.
One can never predict how others will respond with this sort of news. While my family and l were so glad to welcome our baby girl into the world, it was also bittersweet in different ways.
One of my family members experienced grief over Sugar and Spice’s hand. There were questions about why God would let this happen.
Another family member was angry. There were questions brought up about whether or not this truly was not seen on ultrasounds. Accusations were even made that the tech knew about it and purposely did not tell us. I made sure this thought was never voiced as I felt that our doctor’s office and staff certainly would have told us of any abnormalities or concerns.
The most hurtful reaction was of a family member who temporarily felt that I shouldn’t have more children. They thought that I might just continue to birth children with “problems.” The chances of having another child with Smbrachydactyly though are extremely low. In fact I have since given birth to a son, who indeed has ten fingers and ten toes.
I want to point out that these were all common initial reactions, and we all have worked through the roller coaster of emotions found in my daughter’s unexpected limb difference. In fact our family is her biggest supporter (as well as mine) who can’t get enough of her, and they have been an incredible source of encouragement through the hard times.
My own reaction is probably the most interesting one. In all honesty it is as though I had been prepared for it. I know how odd that sounds. I had no clue that my sweet daughter had eight fingers, but I was not taken back by it. Perhaps the best way that I could explain it was that it was a surprise. When I noticed her three fingers for the first time, I was not upset, angry, in disbelief, or anything negative actually. I believe this largely happened because of God’s great providence. It all began long before my daughter was born.
Back in the year 2003, there was a sweet boy in my toddler class who also had Symbrachydactyly. It was the first time I had ever worked closely with someone with a limb difference. In hindsight I can see so much beauty behind my experience with this little boy. I’ll call him S. There is something about S’s limb difference that is incredibly amazing to me. You see, Symbrachydactyly takes so many forms. Each person has different fingers that are affected by it, and sometimes there are not hands at all. I have met and seen many children and adults with it, but none of them have a hand that looks like my daughter’s. That is, except for S. It’s as though God was preparing me to start to love the hand shape that he would be giving my daughter.
S was such a gift to me, but I didn’t even realize it. I wouldn’t say that he was one of those kids who just melted my heart. In fact, I had to adjust to his hand. Like anyone else I was curious about it, and if I am being completely honest, I found it a little strange. That awkwardness and uncertainty fades away though as you get to know the person and see them, instead of their abnormality. There is no doubt in my mind that S was supposed to be in my class. He showed me that he wasn’t bothered by his hand, and I learned that the more I came to know him, the less I noticed his hand. In fact, it became normal to me. S taught me a lesson that I would need for the rest of my life: each child is important and equally deserving of love, no matter what their differences are.
My Changed Perspective
The time that I had with S brought me to a place in my life where I could see children without being distracted by their physical differences. Of course I notice how people are all made differently, but now I see it as something that makes them more beautiful and not defective. I actually hate the term “birth defect.” The word defective makes me think of items that are not wanted. When I buy something at the store, open up the packaging and see that it is defective, my initial reaction is to take it back. Children are not returnable, nor have I ever wanted Sugar and Spice to have 10 fingers, so I just can’t come to agreement within myself over the medical term “birth defect.”
From my perspective Sugar and Spice is wonderfully made. She was supposed to be born this way, and it all was with great thought that she has eight fingers. The best way that I can articulate how I feet about it is not even with my own words, but through those of King David in Psalm 139:13-16. (The Message Version)
Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
While I feel so blessed to be Sugar and Spice’s mother, and I have never questioned or doubted her differences, that does not mean that life is always smooth sailing. We absolutely have rough moments and days. Sometimes there are periods of discouragement or despair even. From time to time I have to fight the desire to shield or hide her hand.
As with many other parents in our boat, we found out that we would be entrusting our sweet baby to go “under the knife.” Sugar and Spice had surgery when she was 9 months old. She has a thumb and two fingers, and her two fingers were fused at birth. We opted to separate these fingers to allow her more functionality with them. Surgery is never an experience for a parent to easily stand back and wait through. We would love to trade places with our children in a heartbeat. There are also the unknowns that could go wrong. Thankfully, her own procedure went well with a very experienced and knowledgeable surgeon.
Then there were the complications. After her surgery, we realized for the first time that one of her fingers has very little movement. We had no clue about this previously since her other finger was unknowing doing all the hard work before they were separated. It looks like she may have a second surgery ahead of her, but miraculously she is moving the less mobile finger more and more on her own. I believe that our bazillions of prayers over her certainly play an important role in this.
Other people’s reactions are hurtful. Children are by nature very honest. While Sugar and Spice has not understood or been offended by others yet, there have been plenty of comments that have pulled at my heart strings. Comments such as “her hand looks like a pig [hand],” “she’s creepy,” and “what’s wrong with her.” I might even admit that this has been one of my hardest aspects of dealing with the entire situation.
Sugar and Spice’s entire arm is affected by Symbrachydactyly. It’s about 10-15% shorter than her other arm, so activities such as monkey bars, cartwheels, and the like are going to require lots more time and effort. I’m sure we will run into activities that she won’t be able to do at all because of it. I’ll always encourage her to try first though.
Every aspect of life that involves five fingers is magnified. As most people have five fingers on each hand, she will have to adapt to many different activities and products. The exciting world of learning to play an instrument will require modification and probably extra patience. Songs such as “Where is Thumbkin” just don’t feel right to sing, but that’s my own hang up, not hers. Even something as simple as a “high five” takes on a whole new connotation for us.
We often deal with *extra* moments that take us by surprise. Of course all children come with their own surprises. There can be numerous awkward situations whenever we are in a public and not surrounded by our caring and understanding circle of friends and family. The awkwardness is really mine though, not hers. One day we were shopping at our local grocery store, and without any notice, Sugar and Spice started proclaiming to the nearby shoppers (although it felt like the whole world really): “I have a little hand!” She shouted this several times, waving it for all to see. The room started to spin slightly as I was ingesting all of this. Questions started pouring into my mind: How many people realized what she was talking about? Do I interrupt her? Is this normal? Where is the part on awkwardness in the parenting handbook? Oh yeah, it doesn’t exist! It was a learning experience for me that she was starting to see herself as different from many other people, and this was part of the process of acknowledging it…despite the fact that I turned bright red.
The newest hurdle we have come across is her own self realization. While Sugar and Spice is a joy filled child and is not usually bothered by having less fingers, she has her days as well. She is starting to notice that we don’t have any people in our lives with a hand like hers. The other night she told me, “Mommy, I don’t want a little hand…I want two big hands.” I knew this day would come eventually, but I still didn’t want it to. It’s probably safe to say I wished it could not come about, that somehow we could skip this rough moment. After all she made it super easy on me on learning to sleep through the night and become potty trained. The moment did happen though, and I had to fight the “dear in the headlights” response. I took a breath, and I responded by explaining to her about how special she is because God created her in a very unique way. All a parent can do at this point is hope that it was the
right best response. Thankfully she took it to heart. She smiled and seemed to convey that my answer was what she needed for now. In all honesty though, I know this will be coming up more often, and my explanation might not always be received so well.
While it can be easy to focus on the negative — the fact that our daughter has a birth defect which makes life more challenging –I choose to put that away. Instead, I see her for who she is: a smiley, excited, and exuberant young girl. Despite her differences she is overall a truly healthy and happy child. We have so much to be thankful for, and she brings us inexpressible joy. Her personality and her love outshine all of the negatives, and her hand is many times, the least of our concerns. And just as with S, it is easy to focus on who she is and actually forget that she is different from others.
I know that our situation is a cake walk compared to some others. Our own journey feels like a boat that has been rocked by some waves, while I have witnessed other families who have been ravaged by a raging, destructive storm. I’ve had friends who have buried their sweet babies, and I know of several children who will grow up without the ability to ever live on their own. I cannot imagine the heartache and trials they go through each day.
We count it a blessing that Sugar and Spice was born this way, and we are honored to be her parents. Whatever differences our children have can truly be considered a gift — despite the difficulties that come along with the package. The process as a parent will not be easy, but I truly believe that our joy will be all the sweeter as we learn to embrace the beauty in the unexpected.
Stories From Others
I want to close by bringing hope and inspiration to more families, ones who are dealing with other birth defects. Each year there are just under 8 million children born with serious birth defects. That’s nearly 6% of births, worldwide. While this topic is not commonly talked about, I wish it were. I want other parents to know that they are not alone, that they did not cause this, that they can experience healing, and especially that their child can go on living a healthy, thriving life in most circumstances. Some of my blogging buddies were kind enough to pass along some of their own experiences, and I am honored to have their stories here for you all to read.
The Ishum Family and their Quadruplets (Hemangioman, eating issues, heart defects, cysts):
Makeovers and Motherhood on Craniosynostosis:
The Educators’ Spin On It (Vision)
Nerdy Science (Brain AMV):