Tuesday, November 22, 2011

Oh, Feet.

Just so you know, I'm tearing up before I even start writing this thing. And why am I crying like a fool? It's all over my kid's feet. Well...her toes to be precise. Leave it to me to cry over just about anything.

Evelyn was born with a little thing call Syndactyly, which is a fancy name for what happens when two of a baby's fingers or toes are connected together. It happens about once in every 2,000 births and it's usually not a huge deal - especially when it happens to the feet. It's purely cosmetic and it doesn't hinder growth or development at all. Unlike what most people think of webbing, there is no skin between the fingers or toes...they're just sort of fused together. In an adult, it looks like this:


It's a hereditary thing, and Evie gets her special twin toes from her dad's side of the family. :) Although, no one else in the family has toes that are that fused together...just a little bit at the base so that it's hardly even noticeable. But our little Evelyn lucked out. She has Syndactyly on both feet, and one is much more noticeable than the other.

We weren't concerned in the least bit when we brought our bundle of joy home from the hospital. But it did weigh on Eric's and my mind that when Evie gets a bit older she might be self-concious about her awesome feet. We did a little research and discovered that the best time to get corrective surgery for something like this is between the ages of six months and two years. So we made an appointment for our darling to be checked out to see what our options were.

When we went to St. Louis Children's Hospital the doctor took one look at Evelyn's toes and basically wrote it off as not a big deal at all. She told us to think more about it and make another appointment to have x-rays taken if we were really serious about having a surgery done. We did really want it done...but then...we found out we were expecting another baby. Babies cost money. And so we didn't have any extra to pay for a superfluous surgery.

Evie's newborn feet. :) It's hard to see in this picture, but the foot on the left (her right foot) has the less noticeable connection, and the foot on the right (her left foot) is the more connected.

About the time we were revisiting the idea to get Evelyn checked out again Eric got sick and had to go the ER, and I had my first root canal...aka: $$. Once again, the money simply wasn't there. Evelyn kept getting a little older and a little older, and then finally her second birthday came and went this summer and we still hadn't had the surgery done. Again, it's really no big deal. Evelyn is still too little to be teased about it or worry about wearing sandals to the pool...(ugh, that's the part that kills me. Kids can be so mean.) And she has been oblivious to the whole thing all along. Until yesterday. And this is where I start crying like a fool.

We were sitting on the couch watching TV and out of nowhere, in her little Minnie Mouse voice, she said, "What happened to my toes??" And my heart sank into my stomach, because I knew exactly what she was talking about. She's not supposed to be worrying about stuff like this already. But just in case, I asked her, "What to you mean, 'what happened to my toes?'"

And then the dagger: "My toes are...broken, mama."

I kept my composure as I assured her that her toes were not broken and that they were beautiful and fine...but I had to get up and walk into the kitchen, because I lost it. It just sort of blindsided me. I had always assumed we'd have her little toes taken care of before she would even notice anything was different about them and that would be that. We would tell her stories when she was older and show her pictures of how her cute little feet used to look. But she's always been super observant, and Evie beat me to the chase.

She thought her toes were broken. That one word has had me tearing up over and over again. I called Eric and told him what had happened and wiped my eyes so that Evie wouldn't think anything was wrong. I'm laughing at myself, because it's not as if my child has some life-threatening disease or something...it's just a little cosmetic toe thing. But she noticed it and was obviously concerned about it. And that was what broke my heart.

A random picture I have of Evie's left foot...as you can see it's hard to even tell there's anything different about it. But I have a feeling the older she gets, the more noticeable it will become.

So now that we haven't had any unexpected medical emergencies or babies in a while we're once again looking into Evie's surgery. Two weeks from today we'll be taking her tiny tootsies to Children's to get the ball rolling. I'm relieved to be getting it over with, and terrified all at the same time. I do not like thinking about Evelyn going under anesthesia and having skin grafts done and all that junk. I hate knowing this will probably be at least one if not a two night hospital stay. And I don't want her to be in pain, either.

On the other hand...I don't want her to be twelve years old and cursing me for not doing something about this while we could and when she wouldn't remember most of it. I keep hearing stories of grown people who never went swimming as a kid because they were too embarrassed to take their shoes off. I couldn't even imagine that!

Then on the other hand...I've read about adults who LOVE their twin toes and are happy to rock them whenever they can, haha. The option to wait until she's older and can make the choice on her own isn't really on the table for us right now, because from all that we've researched it really is best to take care of it as soon as possible. The older someone is when they have the surgery done the more complications there can be. I've even read of some adult's toes growing back after having the surgery. (Weird!)

So...this isn't an easy decision to make, so let me know what you think. If you had a child with Syndactyly would you get the surgery done or would you let it be? Obviously we haven't seriously sat down with the doctor to discuss the logistics of the surgery yet, but if we do decide to go forward it will probably be sometime next summer. So we still have a little bit of time to mull it over.

Evelyn hasn't mentioned anything about her toes since her discovery on the couch yesterday afternoon, and I'm praying she just forgets all about it. :) Don't know what the odds of that happening are, but hey, I can dream can't I? Oh, and in case you're wondering, Gracie's toes are Syndactyly free. In fact, we have no idea where she gets her chubby little feet from! :D

14 comments:

Angeline M. said...

Don't do it! Just explain to her that's a trait that she inherited from a relative. That connects her to great aunt/uncle so and so. It's something special and unique. I have a multiple friends who have it and it really is not a problem for them and more a cool thing unique to them. I remember having questions when I was younger but once the person who has it explains it--you think it's kinda cool. You've told her they're not broken, that they're beautiful and fine, which they are. Now believe it and make her believe it! No matter what you think the world may think of them. Tell her how unique and special it makes her little tootsies! When anyone asks about them tell her to tell them she has ROBERT FEET! The concept at first may be hard to grasp for her--the connection to a relative, but it will eventually catch on.

First time commenting Adrien but I really enjoy visiting your blog every so often!

Sarah said...

Poor Evie :(

I think you are making the right decision Mama. The thought of your baby having surgery is terrifying but you will have tons of support and prayers. She will thank you in the long run.

Cassie said...

i agree - kids are MEAN, but you have to think about the kids who have stuff wrong with them and CAN'T do anything about it. like that high school kid who lost his arm in the meat grinder, and now he's a star freaking athlete!! yeah i'm sure he's self conscious about it, but he didn't sit and say i can't do anything because i don't have a hand, it said, watch his. i mean obviously a hand and a foot are different, but it's all about the way you go about it. rock that toe Evie girl, you are 2 and have confidence out of this world, i could only imagine what you will be like at 12!!

Adrien said...

Thank you for your quick responses! I feel like my brain is a ping pong ball the way I bounce back and forth with this decision. For me it's just so hard to judge what I think Evie will feel about it when she's older. If it were ME, I'd be ticked if my parents hadn't done something about it. But Cassie, you're right...Evie's such a free spirit that instead of hiding her feet, I could see her whipping off her shoes whenever she could and saying, "Hey guys, look at my FEET!" Haha.

Kim Luke said...

Dane has them on one foot too, and like you said, he LOVES them! lol he's proud of his toes.
I personally wouldn't do anything about them! I think it's cute!!

sblind2 said...

Parenting is full of hard decisions....you guys will make the best one for you and your family! =)

If I would have those toes, I would totally get that tattoo! =)

Heather said...

If it were my child, I would correct the foot that is very noticeable, and let the other one go so homegirl can totally rock out that tattoo when she gets older.

Adrien said...

That's exactly what I think we would do, Heather. I'm not worried about the other foot at all, and yes, I would get the tattoo, too! :)

Stephanie said...

first off, don't belittle the way you are feeling about the whole situation, we want to give our children everything perfect, perfect bodies and a perfect world to grow up in. and when we hit the imperfections, they are hard on us as parents, even if they don't affect the kiddos all that much. secondly, surgery needs to obviously be a decision that you and Eric make. but I would also try to gauge how Evie would handle surgery, if surgery and recovery would be really hard on her, then is it worth it? talk to other Robert family members about how they've handled it. if you decide to forgo surgery and leave them, treating it like a trait no different from curly hair or a chin dimple will go a long way with her, she will grow up thinking it's fine, she'll adopt that attitude towards her friends, and most of them will pick that up from her. Nick got teased pretty bad for his chin dimple, so he covered it up with the goatee, it'll be even easier for her to cover her toes at the times in her life that she feels awkward about them, then show them proudly when she's not. look in the mirror really hard, you might find imperfections your parents worried you would get teased for and wished they could fix and obviously, you are fine. (your height comes to mind, shorty :)and remember this is coming from a mom who's kid is very obviously different from the norm, and we have already dealt with how society handles being presented with kids with differences, you get through it. (not that I am comparing my daughter's autism to your's toes, BIG difference, I know)

Rachel said...

Hey! I've been following your blog and enjoy reading it. I have a son about Evie's age. I wanted to respond to this post because I have syndactaly on both feet. And I was never teased. Actually everyone kind of thought it was cool. When I bend my toes and look down at my feet, it looks like the back of a frog head (have her try it!). Surgery is a big deal (trust me I've had multiple corrective hip surgeries also.) I not only have webbed toes, but I also have 15 inch scars on both of my thighs. My parents never made an issue of either of those "imperfections". They told me they were part of what made me me. I went with it and instead of being ashamed of my scars and webbed toes, I loved them and so did most everyone else. Just remember a simple surgery is NEVER simple. If the doctor does not advise it as a necessity, I'd avoid it and teach Evie how cool her toes are! Now, you will have to cross a difficult bridge if toe socks make their way back into fashion...I never could wear those things comfortably. Ha!

Anonymous said...

Our 8 month old has a similar presentation of toes, except one side is connected even higher. I actually came across your blog while trying to research options, timelines, etc. we had originally been told to consult with the plastic surgeon at 4 months, but she was just too little. I have an appointment scheduled at the end of the month, but am still so conflicted! I'm struggling with issues similar to you. I have two connected toes, but it's much lower and I have short toes. Her toes are long and skinny which makes it more noticeable. One of her 2-year old twin sisters also has them, but lower. We didn't even consider surgery for her sister. I'm very interested to hear what you decide and what your experience is. I would also love any resources you found. I'm not coming up with much for infants. Good luck! Krista.branch@gmail.com

Adrien said...

Yes, I know exactly the conflicted feelings you're having! We are sort of at a stand-still at the moment in our decision. We've seen three different doctors now and they have all referred us to someone else, and we're honestly wondering if this is a sign to us that we should NOT do the surgery. Just seems like we're jumping through so many hoops for an unnecessary surgery at this time.

This source helps spell out everything in a very easy to understand way:

http://smilesforkids.missouri.edu/common_conditions/syndactyly.php

I think it's hard to find information on it, because most sources talk about the connection of fingers instead of toes...but it's called the same thing. From what we have learned from talking to doctors, it's the same procedure to correct it.

Anonymous said...

I'm a 30-year-old man, and I have syndactyly almost exactly like the girl with the toe tattoo, but on my left foot. 3/4 fusion of the second and third toes. I also had a tiny nub of an extra toe coming out the side of my second toe near the tip! Like you, my parents agonized over whether to repair it or not. My mom really wanted to, but my dad (who is a doctor) and the other medical professionals involved prevailed on her to leave my toes alone. I'm glad they did! In 2nd grade I had an unrelated surgery and they took the opportunity (with my full consent and input, even at that age) to remove the nub since it often got irritated - but I opted to keep the harmless syndactyly and skip the skin grafts. Despite the fairly obvious fusion of two toes, hardly anyone notices even when I'm barefoot. Most people who do notice (or who I point it out to) think it's interesting or even cool. More than one person has earnestly asked if I can swim faster because of it. In my entire life, only three or four people have ever had an openly negative reaction to it. The few negative comments only reflected poorly on the commenters, not on me or my toes. I remember that at any point in my childhood or adult life, I could have chosen to have them separated if I really wanted to. More importantly, those few minor comments have been completely overshadowed by the multiple young women who have found my toes interesting, endearing, or attractive! My ex named it my "ubertoe". Yesterday she sent me the picture of the girl with the "cut along the dotted line" tattoo - and I went straight to a tattoo shop and got my first ink done! With only a handful of people on earth who could even get that same tattoo, I don't care that it's not completely original. Now more people will undoubtedly notice my ubertoe. And that's okay.

Shelli said...

I was searching the Internet about fused toes and came across your blog.. My 2 year old has it on both feet, his second and third toes are completely fused.. My husband and I said at the hospital when he was born that we would fix his toes.. We thought it would be best for him and we too worried about teasing. But now we don't even think about it.. We feel like it makes him special.. He just recently noticed his toes and started pulling on them looking at me saying "stuck..toes...stuck" and I didn't know what to say.. His older brother who is 9 put his toes together and said " look mine are too.. We are cool" he started laughing and kept playing.. The more I reasearch and think about getting surgery done... We have decided to not do the surgery... I feel lucky to have a healthy son and that's all I could ask for.. Plus the risks of going under Anastasia out weighs the pros of the surgery... I'm glad I came across your blog.. Thank you for sharing I have not meet anyone yet with a child with fused toes and often wondered what they thought.. So thank you :)

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