My Baby with Complete, Complex Syndactyly Type III

Complete means his fingers are connected all the way to the tips. If they weren’t it’d be incomplete syndactyly.
Complex means his bones are connected. If only soft tissue was connected it’d be simple syndactyly.
Type 3 is where the ring and pinky fingers are connected.
Here is a diagram of all the types of syndactyly:  baby complete complex syndactyly type 3

I never make blog post titles that are google-able, or that are purposefully to encourage those googling a certain phrase to find my post. This time I did on purpose because when I was pregnant with Everett and found out he had syndactyly I went home and googled and googled and googled some more. And there is SO little information!! So, so little! There are websites with some facts and details and that is helpful but once I got the jist of what syndactyly is and what’s done about it I wanted real life help and information. I wanted a mother with a baby who had syndactyly to tell me all about it.

“Luckily” I have a friend whose son had syndactyly type 1 (the most common type) and she was a wealth of information.

Unfortunately there was literally zero real life information out there on syndactyly type 3 (Everett’s type) because it’s more rare. I wanted to connect with a mother whose child had this type since the surgery and after care all happen when the baby is so much younger. With type 1 (this is where the middle finger and ring finger are fused) doctors wait until 18 months or older to do the surgery. In Everett’s type they can’t wait that long because his ring finger bone will start to have a curve to it as it will be held down by the small pinky finger. In type 1 with the middle and ring fingers this doesn’t happen since those two fingers are similar in length.

As I get closer to the appointment with Everett’s new orthopedic surgeon I find myself getting more and more worried. I am the type of parent who completely freaks out with medical stuff. I hate when my kids get shots for heaven’s sake!
I have not only the huge fear of surgery on my baby but major worry and dread about the after care. After surgery Everett will be in casts for a couple weeks. When the casts come off I will have to change his bandages daily. I will have to soak his hands in water (mixed with something, I think) for 15 minutes and then re-bandage it all. This will last 4-6 weeks. Longer if there are complications.

He will have a wound on his inner thigh from where they take skin for a skin graft. Maybe on both thighs. Or maybe on the butt or some other place where he has enough skin to spare.
He’ll be in a lot of pain and I’ll have to give him pain medications. I don’t know for how long, it depends on the baby.

This all freaks me out. I crave someone to relate to on this. I know there are so many things that are worse and riskier and all that. But right now all I can think about is what I’m dealing with and how I wish I had someone to talk to about it. Someone who had their child have surgery and a huge recovery at the age Everett is. Someone who had to do weeks of bandage changes and had to give their child pain medications… someone with a baby who had syndactyly type 3. haha!

And since I don’t have that I figured I’d make a post with as many keywords as I can so that maybe in the future if a mom finds out her baby has this and wants information and support, I can be that for her.

Anyway, because pictures are always more fun than words 😉 Here are some of my Everett’s hands. I have found myself wanting to photograph them more, especially now that he grabs at things and holds things… to document these hands of his as they are right now since they will be totally different in a couple months!  photo babycompletecomplexsyndactylytype3_zps0192b845.jpg photo img2babycompletecomplexsyndactylytype3_zps5047e80f.jpg photo img3babycompletecomplexsyndactylytype3_zps6be78a4c.jpg

One little fact about complete syndactyly is that it is really hard to cut his nails! The nails connect so getting the nail clippers to go under the nails is difficult! And I don’t want to cut too low where the nails meet so I can’t cut them as short as I would his other nails.  photo img4babycompletecomplexsyndactylytype3_zps1b796265.jpg

This shows the tops of his fingers better.  photo img5babycompletecomplexsyndactylytype3_zps93924fab.jpg photo img6babycompletecomplexsyndactylytype3_zpsd137f518.jpg
For those of you who couldn’t care less about Everett’s hands, I’m sorry because there will be many more posts coming up about his hands! haha. But you know, he’ll have surgery and he’ll heal and then those posts will fade away 🙂

And if you just found my blog after google searching and you have a baby with syndactyly and want more information or to connect (I’m way more active on facebook than my blog and we can be facebook friends) email me at: ariana.tnh@gmail.com. Put something about syndactyly in the subject and I’ll respond as quickly as possible! 🙂

4 thoughts on “My Baby with Complete, Complex Syndactyly Type III

  • OH, i feel your frustration! I went through a rare surgery myself and was so frustrated at the lack of information I was finding out there. It must be terrifying to have your baby going through this. My daughter had tubes in at 9mths and it was definitely more traumatic for me than for her! 😉 I wish you and Everett the best! I'm sure you have great doctors lined up (maybe they can refer you to past patients??)

  • That's a great idea, Becky! I hadn't thought to ask his doctor for other parents information or forums or groups or anything like that!! Thanks for the idea!

  • I wish I had read this post sooner! I'm doing a bit of “catching up” myself! You had a wonderful idea with how you titled this post, and I hope by now you have received emails from others who have gone through similar experiences. Talking to other parents whose children have gone through something similar to what Everett is about to face will be helpful and reassuring. Becky had a great suggestion, too, as far as asking your doctors for referrals to past patients. I'm sure there are other parents who would be willing to talk to you and share their experiences. My husband and I used to volunteer to share our experiences with other parents who had premature babies facing similar medical conditions.

    While I can't speak to Everett's exact situation or the type of surgery he will be having, I can empathize with you personally over several of the worries and concerns you are experiencing. I shared with you that my son has had numerous surgeries…and several of them happened when he was extremely young. In fact, a handful took place shortly after he was born and still in the NICU. I can relate to your concerns regarding surgery at such a young age (worries about anesthesia and recovery, etc.) and about things like wound care, which is so hard with an infant when you can't explain what you are doing and why you are doing it. As a mom, your heart will break over the pain it is causing. As a fellow mom who has been through that, my heart goes out to you!

    If I could share with you the photo I took after my son's most recent surgery (not for the squeamish) and a photo taken just a couple of shorts weeks later, you would be absolutely amazed by the rate of healing. That is one thing I would want you to know. Even with babies seeming so small and vulnerable, their strength is remarkable…their body's ability to heal is incredible. Remind yourself of that during the first several (and most difficult) days post surgery. I found great comfort in a simple statement a doctor once made to me. He said, “Our bodies always want to heal…they are always working toward healing themselves.” It was such a simple shift in my thinking, but it gave me great comfort being reminded that my son's body was naturally trying to heal and get better…and his body knew how to go about doing that even though he was just a baby.

    I LOVE the photos you are sharing of Everett's sweet little hands. They actually make me tear up, and I completely understand you wanting to document and remember the “before”. I can relate to this is so many personal ways. I know you feel Everett is perfect and beautiful and wonderful just as he is today…and he is. And even though his hands will function “better” after this surgery and recovery, it is a physical change in your precious little love. As far as I'm concerned, the more pictures the better…and we are blessed that you are willing to share!

    I appreciated the diagram at the top of the post. It gave me a much better understanding of Everett's type of Syndactyly.

    Please feel free to email me anytime if you want to chat or vent or ask questions…for any reason at all. I am happy to share anything about my experiences that might be helpful to you. Considering I am still in the dark ages when it comes to Facebook and other social media, I would be more than happy to share my number if it's easier to talk.

    My thoughts and prayers are with you and will continue to be!

    Chere

  • Hi! Just found blog through google search. My son was born with simple incomplete type 1 syndactyly both hands. I was also surprised at how few stories and pictures I could find on his condition. It is comforting to find
    families who are going through the same type of journey. My son is 9 months old and we will be having his surgery on Thursday (April 17) I am planning to blog about his surgery and recovery on my blog so hopefully to help others going through this. Good luck and best wishes for upcoming surgery with your son!!Www.redstarmomma.blogspot.com

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