From left: My mom, Ludmila, Ania and Mila

Today, I brought Ania with me to pick up Mila from school (she’s about to graduate from senior kindergarten), her classmates love Ania, some of them play with my girls after school at the school playground, but today was the very first time everyone noticed how different Ania’s fingers looked! They all immediately surrounded her and started grabbing Ania’s fingers without asking, it was total mayhem for a minute, I literally had to physically move them away because no one was paying attention to Ania’s swipes at their heads in defence or my pleas for space.
I know, curious 5 year-olds, Ania was fine a minute later and resumed the mad race with her older friends and big sister around the playground as if nothing had happened. I’m very glad she’s such a tough little gal, she always reminds me of my mother’s words: “In life, you are never given more than you can handle”, I believe this now more than ever.

BTW, this last drawing is a water spider!

Ania is 3 years-old now and doing great, her scars are much softer since I last updated this blog, they have stretched with her growing fingers and visibly flattened, some people heal very fast after surgeries but not Ania, she gets it from me, it took me a whole year to recover from my emergency c-section when I gave birth to her older sister.  Ania’s fingers are moving great, just as well as on the unaffected hand, she can make necklaces and bracelets using tiny beads, she can bend tiny wires to make earrings, she can do anything and everything her older sister does. 

The skin discoloration from her skin graft is still there and will be there forever but she moves so fast, it’s impossible to notice.  It’s amazing, we almost completely forget at times that Ania ever had a surgery on her hand and I am SO THANKFUL that we DID choose to have it done, it feels great that it’s all in the past, all that worry, fear, Ania’s pain and tears, were well worth it.  She is a very happy child, who is compassionate, loving and outgoing, the surgery and recovery did not damage her at all.

I have received many emails from this blog’s readers, sharing your precious stories of surgeries and recovery, asking me about appointments and dealing with scars that refused to heal, a few very harshly criticized me for taking the decision of having or not having the surgery away from Ania, not giving her the choice not to have the surgery and leaving her fingers fused together.   Yes, I made a difficult choice for Ania, I have researched, seen specialists, talked to adults with syndactyly, I made an informed, educated decision as Ania’s parent and I don’t regret it for a moment!   Thanks for all the emails, I read them all, I might not be able to reply to all of them but I’m happy to help in any way I can.

I’m posting photos of Ania’s hand, I know what’s it like giving birth to a baby with syndactyly, coming home from the hospital and rushing to get online to search for close-up photos of little kids’ hands who were also born with this condition and finding so little! I remember how frustrating this was, I will try my best to update with photos every year.  

Those of you who’s kids are pre surgery and you’re worrying sick about the actual surgery and recovery, not to mention how your child will grow up with their hands looking different from other kids’ hands, please consider that children are very smart (no matter genetic abnormalities, various syndromes, whatever), they will show you how strong they truly are and amaze you with their ability to learn and adapt to their environment, they will use what they have to the best of their ability, all they need is a loving and supportive family, it’s as simple as that.

My heart goes out to all the parents out there worrying about your kids, getting unsolicited advice and dealing with questions from very curious strangers, I know you acutely feel the pain your child goes through with surgeries and recovery, sending you strong healing hugs and very positive thoughts, just take one day at a time and please, continue sharing your stories and stay as positive as you can!  If you have a similar blog on the subject of syndactyly, please share it with me and I’ll add it here, there’s no such thing as too much info for those who are desperately searching and finding so little…

We had a follow up appointment with an occupational therapist to see if Ania’s post surgery scars were getting any softer with deep tissue massage, there was absolutely no difference, no matter how often I massaged her fingers, I know deep tissue massage works for most people but apparently it’s not enough if used alone when it comes to Ania’s scars.  The occupational therapist told me Ania has Hypertrophic scars and that your genetics play a role in how badly your skin recovers from an injury, I don’t recover well at all, I have scars from the tiniest cuts, apparently Ania is the same way… I’m sad.

Finally the occupational therapist gave me a sheet of “Mepiform”, it’s $15 (Canadian) per sheet but is still much cheaper than at a drug store!  Here is a short description from a website  that sells this stuff:

Mepiform is a thin, flexible, self-adherent gel sheet that over time can help soften and flatten old and new raised, hardened, or keloid scars, making them appear smaller, lighter and less conspicuous. Clinical reports demonstrate improvements as early as 30 days.     Discreet and comfortable, it can be worn easily under clothing and during most activities, including bathing. And because each sheet of Mepiform can be worn up to 7 days or longer, as well as removed and reapplied numerous times, it is also very cost-effective.

We decided to try to use this bandage overnight at first, I cut it in three different pieces, economically I might add because this stuff is very expensive and covered her hand with a sock so she wouldn’t pull it off in her sleep.  In the morning when I took it off, I saw and felt positive difference right away, her scars were definitely a bit softer!    We’re using it all day long now, Ania hates it but the bandage with a sock on top of it doesn’t prevent her from from being her usual grabby self      I’ll update again soon!

Hypertrophic scars are very protubering and raised, excessive production of granulation tissue, genetic factors are involved. Hypertrophic scars are raised, firm, erythematous scars formed as the result of overzealous collagen synthesis coupled with limited collagen lysis during the remodeling phase of wound healing. The result is the formation of thick, hyalinized collagen bundles consisting of fibroblasts and fibrocytes. Despite the obvious tissue proliferation, they tend to stay in their own boundaries and are limited to the borders of the initial injury..

I feel so dumb now, we frequent this really amazing playground in our neighbourhood, few days ago one little girl who is about 7 years-old asked me what happened to Ania’s fingers, I said “nothing, they’re fine”, she asked several times and I kept on saying “nothing”…. why?????  Why couldn’t I just explain to her, even using Mila’s words?  Am I having issues?  I better get over them soon.

Ania had her 3 month post-surgery appointment a few days ago, apparently the scar tissue on her fingers is too hard and is raised more than it should be, if it gets any worse, her fingers might eventually curve into her palm and if this happens she’ll need an additional surgery to remove some scar tissue……

This was really difficult to hear, I have been massaging her fingers but I guess without sufficient pressure, Ania screams and twists her whole body every time I try to massage her fingers, it’s an excruciating experience every time I do this, I watch the clock and make sure I massage her for at least 3 minutes, every minute feels like a century.   I thought that by now all of Ania’s healing will be over, but apparently it’s only just beginning.    The occupational therapist at the plastic surgery clinic showed me how to do deep tissue massage and made a small silicone form to place between Ania’s fingers before bed every night to keep the scar moist, I slather her fingers with bio oil and cover her whole hand with a sock.   

I’ve been feeling very depressed since the 3 month appointment, I feel like I’m failing to do what I should be doing in order to help Ania heal faster, they tell me she doesn’t feel any pain when I do the deep tissue massage but she acts like it’s the most painful thing in the world, I feel like I’m hurting her but feeling guilty if I do it with less pressure.     I really wish that someone warned me to research and learn all about deep tissue massage and scar care before Ania’s surgery, I tried to prepare myself but I simply didn’t know everything I needed to know, there wasn’t enough info out there or I missed it somehow.    I can’t seem to shake off all this guilt, it didn’t help that I read the “How to deal with bullying” pamphlet front to back while in the waiting room before our appointment.

We have an appointment with our occupational therapist in one month, specifically to check the softness of Ania’s scars, then another appointment with our surgeon in 3 months time.