As my son sits next to a stranger on a park bench, he casually points to his older sister.
“That’s my sister. She only has eight fingers.”
He’s right. Our wonderful daughter was born with only 8 fingers.
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 14 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.”
At first I didn’t even know how to respond! 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 Syndactyly certainly makes life a little more tricky.
Syndactyly is a condition that occurs in every 1 to 2,000-3,000 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.
Our Reactions
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.
The Struggles
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.
Our Focus
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):
What’s Wrong With My Head, Daddy
Hemangioma Surgery on Ellie’s Head
Will She Really Eat When She is Hungry
Rolling, Wiggling, and Giggling
Quad Update: How Are We Doing?
Makeovers and Motherhood on Craniosynostosis:
Sunday Night [The night before surgery]
Monday [The day of the surgery]
Tuesday [The day after surgery]
Friday (Going Home and Forever Grateful)
Flashbacks of Hard Hospital Memories
The Educators’ Spin On It (Vision)
August is Children’s Vision and Learning Month
Nerdy Science (Brain AMV):
- Rainbow Sensory Bottle - March 3, 2024
- Teaching Neurodivergent Children in Early Childhood Education - January 8, 2024
- Creating Musical Memories: Teaching Music in Preschool - October 6, 2023
You are such a brave Mama, and I think you told your daughter exactly the right thing: God did pick her to have a special hand because she is special to Him. I know how hard it is to hear the “observations” of others, but you should know that when I look at the photos of your daughter, I see a beautiful little girl who is radiating joy. What a blessing that she is in your life! I have no idea what the purpose is behind her hand, but I do know that things like this aren’t accidents where God is concerned. How exciting to see what He does with her in her life! And with a mom like you cheering her on, encouraging her to try everything, and helping her be confident in who God created her to be, I would say your daughter has some wonderful advantages in life!
Prayers for your heart, Mama. I know first hand the pain that a careless word can cause. Never doubt that He also chose you to be her Mommy because He knew that you are exactly who she needs!
Rebecca, you sure know how to encourage this mama heart of mine!! I completely agree that there is a plan behind her hand, and I can’t wait to see how it will be used for an even great good than I can ever imagine. Thank you for sharing your own story and for empathizing with the hardships that I encounter. You are an incredible blessing!!
You have a beautiful daughter! Her smile in that first photo is infectious!
I love your inclusion of the psalm. God makes each of us in His own way, and each is perfect in His eyes.
Thank you for those kind words, There’s Just One Mommy. I do love that smile too :).
That Psalm is so hard to read without tearing up (this coming from someone who isn’t typically a crier). I love that God’s perfection far exceeds our own. It’s a pleasure to have you visit!
What a beautiful, touching article Katie! You are an inspiration to moms and those of us who aren’t moms yet 🙂
Thank you for such an encouraging comment! Motherhood is amazing…and surprising…and joyous…and hard. Mostly though it is incredibly rewarding and fulfilling. You’ll be such a wonderful mom one day :).
Thanks for sharing. I didn’t know much about this condition before but I love your analogy of beautiful snow flakes all different but perfect! I have a child with some disabilities but nothing that’s visible (autism, speech disorder, some mobility issues – although quite minor) but I guess we would have the opposite, whereby people look at him and think there doesn’t appear to be anything “wrong” with him so how come he cant talk or walk as well as other kids.. but they are all perfect in their own ways! Your daughter is beautiful and im sure she will overcome any challenges with your support! First time I’ve come across your blog btw (via your FB page) – so hi 🙂
Thank you Anna for such a sweet comment! It is so nice to know that we are not alone in our struggles, although they are different. I have found that some of the most memorable children in my life have been the ones who aren’t “normal.” They have impacted my heart in ways that I couldn’t have imagined. Thank you for sharing your own experience. I am so glad you said “hi” :).
what a wonderful and fascinating post. I’m surprised by the responses of some of your family members. Considering some of the complications that can occur from child birth I would have thought having a few less fingers is not a reason to stop having kids. Thank you so much for sharing Sugar and Spice’s story. I’m pinning this to the Sunday Parenting Party pinterest board
Thank you so much, Monko! The responses were very hard to deal with, and all I really wanted at that point was support and encouragement. I am so thankful everyone worked through their own emotions and came to see that it was not so devastating after all. I appreciate the pin!
I wish you the best in your kindergarten journeys. I was born with Congenital Ectodermal Dysplacia. This means my hair does not grow and my nails are very different from others. It can affect teeth etc. but I was luck y like that. Imagine, a girl with no hair growing up… (I did not wear a wig until I was 21. I wanted to be me.) The thing was, I was blessed with an amazing personality. I was strong. And to this day, other than the typical teasing from neighbors across the street, which wasn’t even about my appearance, I was not teased or picked on in school. I didn’t wear a wig either. I think you’re doing a fabulous job with your little one, and if her strong personality continues, she’ll have a fabulous road ahead of her. Focus on her talents, let her shine in every way she can. She’ll be a great leader. Others will completely forget about he fingers.
I was blessed to marry a wonderful man later on down the road. We have four children. My two biological children, did not inherit CED, but they both have autism. One has over 40 food allergies and a life threatening allergy to adhesives. This allergy is so bad, he’s not allowed to attend school. Before we knew about our boys, we adopted two girls. Both suffer from emotional disturbances, with RAD, PTSD, etc. One has FAS. The other has autism and suffers from a mild case of Cranial Facial Microsomia.
You’re right that you’re prepared for these circumstances. God definitely has a plan for all of us. But the good thing about this imperfect life is, everyone has something, whether it’s missing fingers or hair, or things that aren’t so easily seen like autism, RAD, etc. it’s when we learn to embrace and love these differences, that we truly learn to love ourselves and others. There have been so many benefits to not having hair. Yes, it’s horrible sometimes, but for me personally, the strengths outweigh the bad parts. Sit down with your daughter, talk about the positives. It helps, and she’ll always have that! Good luck!
Renae, your story is so beautiful!! I am just in awe of your strength and courage. You offer such wonderful advice, and I know you are an amazing mama to your four blessings. It is such a pleasure to have you comment!
My niece was born with syndactyly. It affected both of her hands. She had fused fingers on each hand that had to be separated. Her thumb and pinky finger are the normal size. The rest of her fingers are missing the middle bone so they are the same size as her pinky. She was never told she could not do something. We just showed her a different way. I was a teacher’s aide in her preschool class. Other children would remark that her hands were too small. I would look them and say, “But they’re the right size for her.” She is an amazing artist, singer, and did well in school. She plays softball and tennis. Her difference has not slowed her down from achieving whatever she sets her mind to. She just graduated high school in May. She will be attending college in the fall.
This makes my heart so happy to read, Tracy! It is so important to tell these little ones (and all children even) to go for what they love and make sure not to discourage them. I am so inspired about what your niece has accomplished, and it makes me feel so good about Sugar and Spice’s future.
My daughter’s best friend in middle school had Smbrachydactyly, so I am familiar with this. I really appreciated her piano teacher who found music that she would be able to play with her left hand only having 3 fingers. Her parents, also, never treated it as a disability or defect, but encouraged her to figure out ways to do everything her friends were doing.
That was just what I needed to hear, Sue. Sugar and Spice really wants to play the piano, and I would love to find a teacher who would be just like that! I am so glad you visited.
I realize this is an awkward comment, and it probably comes from me not being a parent yet, but I had 2 thoughts upon seeing Sugar and Spice’s picture: “That’s so cool! She has Ninja Turtle fingers!” and “Live long, and prosper.” There may come days when identifying with heroes, even fictional ones, may be a source of strength, and that a Vulcan blessing may remind her, and you, of the blessing of life, in all its forms.
I love that, Corinne! Thank you for sharing your awesome perspective. You just made me smile :).
As a high schooler with a symbrachydactyl hand that looks a lot like hers, I’ve gotten both of those comments (along with velociraptor, alien, and west side symbol). It’s probably different between people but I’m not offended by these comments and often find them fun.
We all have our challenges on this earth. “Perfect” is impossible to achieve. There is an amazing song to empower kids and help raise their self-confidence. It is called “Wonderful You” and is available on iTunes. The lyrics will bring tears to moms, who already know how special their children are: Here is a link…..the song is #15 on the album of the same name: https://itunes.apple.com/ca/album/wonderful-you/id927564656
Your daughter is a beautiful person. Hope she grows to love herself as much as you love her!
That’s a beautiful song, Polly! We have it and love it. Thank you for the sweet words, and I hope she does too :).
I was born with symbrachydactyly. I have three fingers on my left hand. I have 1 thumb and 2 fingers, and a normal length arm. The thumb is normal though angled a bit odd, the middle finger only has 2 working joints instead of 3, and the “pinky” has 2.5 working joints and is fully functional though it’s twisted inwards. (picture of hand http://yardsards.tumblr.com/post/114887230551 ). I’m in high school now.
I don’t have any troubles with it now. I have no trouble with functionality and almost none with people. The most I get is the occasional “woah 3 fingers? how did that happen?” when meeting new people (or sometimes months later, it’s surprisingly not noticable); and one from someone who is now a close friend and didn’t notice until a while after knowing me “wow that looks like a velociraptor hand! that’s so cool! I wish I had a cool hand like that! …wait was that rude? I just think it’s cool”. I make jokes about it and allow others to do so too (they always ask permission first and make sure I won’t be offended). While I like jokes, I do NOT like to be overly pitied by well-meaning adults or classmates. “Oh no can you carry that? Can you write? Do you need help? Here let me do that for you,” and such comments when I’m ALREADY having NO difficulty with any of those tasks is just condescending and obnoxious. Of course, your child’s reactions to attention and jokes and pity might be different from mine.
As a child I didn’t have too much trouble. When I was a baby, much like your child, I needed surgery to separate my 2 fingers. When the teacher made us count fingers I taught myself 8 fingers plus 2 whole feet is 10. My winter gloves had 2 extra fingers flopping around but that never got in the way of a good snowball fight. In early elementary school, I had to go to special classes to learn how to use my right hand; I had poor motor functioning in it and tended to try to use my left hand to write. The special teacher said she believed I was probably meant to be a lefty, so I had to learn to be a righty or find a better way to use my left (I chose to become right handed). Now I’m like most people: can write with my right hand just fine, can’t write well with my left but can carry things with it with no problem. The confused/shocked comments from classmates were more common when I was younger (though that might just be because I was eager to show it to people, and now it’s just a basic fact about myself that I neither show off or hide, just a hand). I made jokes about it myself, but other kids tended not to. I got more of that pity, which at least bothered me slightly less back then. Going into middle school, my school offered kids instrument lessons. I knew I couldn’t learn woodwinds, so I looked at brass and percussion. I had difficulty holding the drum stick and the tuba was too heavy, so I went with trumpet. The trumpet is such a good instrument (especially for people like me as it only requires 3 fingers -and probably a thumb- on the right hand, and maybe a left arm to help hold the instrument up). Even if I did have full hands, I think it would be a good instrument. Seriously, it’s great. Maybe your daughter won’t take to it like I did, but if she shows interest in learning an instrument, bring up the idea and maybe let her try it out at a music store to see if she likes it.
Anyways what I’m trying to say is you kid’s gonna be okay. You probably don’t have to worry as much as you seem to be. It’s just a hand and arm.
Awww, thanks for sharing about yourself, Ivy! I loved reading this and hearing your wonderful perspective. It’s nice as a mom to hear your own experiences and how it’s just no big deal. That’s how we are with my daughter in everyday life. We often forget that she is different…unless someone else points it out. It’s funny and wonderful how it becomes the norm. I can’t wait to show this to my daughter…and she’s totally gonna want to do her nails like yours! I appreciate you taking the time to comment!
Just happened to come across your article and so I guess your little girl is quite a bit older now! My grandson who lives in Melbourne Australia has a left hand that looks identical to your daughter’s right hand. Including the surgery to separate his 2 fingers. Liam is now 7 and was just given an award by his school that is given to one child in the 400 child school that exhibits the traits of kindness, respect and compassion. What a wonderful award and one that I am sure his particular challenge helped him to win. His compassion and kindness come in part from great parenting but also I think from being different. He may lack some fingers but he has been given a big and caring heart.
Your grandson sounds incredible, Carol!! You must be so proud. I think you’re right. They have an extra dose of empathy and are just extra caring. My daughter is 10 now. Where does the time go???
I just came across this blog entry from the link through Lucky Fin project. As I was reading, I felt like I was reading my own story with my first born! She was born with two identical hands that have three fingers (one thumb and two fingers) each. My husband was the first to discover this, as she was laying on my chest after birth. I wish I could go back and tell myself that the first year of medical appointments, with all of the organ scans, x-rays, geneticist tests, and occupational therapy evaluations were nothing to get worked up over. It turns out that they told us they have no explanation as she’s fully functioning and there’s no genetic reason for it. I told them that she is just the way God made her, and she will glorify Him!! She just turned five and within the last year or so she’s really started to notice that her hands are different. Since they’re identical, many people don’t notice anything at first, but she sometimes points it out. ❤️I feel such a connection to you and your little girl, I wish I had found your blog 5 years ago!
You have just encouraged my heart, Laura! I can remember the process of my daughter starting to see her differences around that age too. She’s almost 12 now, and it’s been quite a journey. Both of strength and trials. God’s imprint is over them both, and He absolutely has amazing plans for them. I so appreciate you taking the time to write. ❤️
Warmly,
Katie