Joke’s on Me: Fibular Hemimelia

June 21, 2018 AFO, Family Stories, fibular hemimelia, June 2018 Feature - Orthopedic, leg length discrepancy, limb difference, medical trauma, Orthopedic, referral, should we adopt?, surgery, trauma, waiting for referral 12 Comments

If you have adopted, you know the overwhelming process of filling out the medical needs checklist (MCC). For those that haven’t, this is a piece of paper with a wide range list of medical needs, each having little boxes beside them, and your job is to check the ones you are open to within adoption. Each need deserves careful consideration through research, learning about others’ experiences and your own family’s resources. For my husband and I, the process of going need by need was heart-wrenching because with each unchecked box, we felt we were leaving children behind.

A friend’s unknowing advice stood out to me during this time when she adamantly and confidently said, “Now that I have adopted once, my MCC would be vast.” I thought of this often. Her experience and knowledge drove away fear and uncertainty. I didn’t want fear to dictate the growth of our family. I didn’t want to look back and regret not being more open. With this in mind, we wisely checked several needs that were newer to our familiarity, including limb differences. To be honest, I was leery because it wasn’t a need I knew much about, especially lower limb differences. I only knew families with children who had hand differences. I even specified by writing in the margin “not lower limb differences”.

I think about this one statement quite often and find myself giggling. Oh how the joke’s on me because not one of our four children, but two, have lower limb differences. Our agency knew us well enough to call and inform me of a little girl’s file with an unknown lower limb difference. We agreed to look over the file despite the side note and anxiously awaited for the e-mail with her referral to pop up.

Refresh. Refresh. Refresh.

Were we about to see our newest daughter?

Then… there she was. We had a good laugh at her muggin’ the camera and her video where she screamed almost the entire time. She clearly wasn’t into our agency’s representative who was visiting, but it soon became clear we were into her. We loved her soft face, her confidence in her mix-matched outfits, the way her friend was concerned for her, and her almost-hint-of-a-smile. Despite the tears we saw, we also saw a sweetness, a fighter, and most importantly, our daughter. There was no longer a side note in the margin needed.

She was ours.

Meet Mei-Mei.

Over the next few months, we excitingly prepared for her arrival. We were smitten with her pictures which mainly consisted of the cutest stink eye ever. Our two children home were so excited to see their sweet sister’s face and our three year old son carried her framed photo around and sat it down next to him when he stopped to play.

During this time, we had her file looked at by orthopedic surgeons who felt confident she had Fibular Hemimelia (FH). FH is a congenital condition where the presence of the fibular bone is missing causing varying degrees of limb length discrepancy, foot deformities, and knee deformities. We could physically see how her leg was affected, but needed imaging to know the magnitude and treatment for it.

Due to the extensiveness of surgical intervention, I stayed off the internet and started connecting with families that also shared similar conditions as well as joining Facebook groups that were specific to her condition. This was very comforting and made unknown things like external fixators, amputations, rods, screws, and extended hospital stays less scary. I started getting use to the idea of orthotics and shoe lifts. It’s funny now to think I even had to “get used to the idea” but, like with most new things, there is an adjustment period. And I have learned that this is okay and completely normal.

As expecting parents, we love preparing for our newest addition’s arrival. Preparing for Mei-Mei’s arrival wasn’t just about the perfect wall collage, curtains with pom-poms and a closet full of cute outfits (not to discredit how much joy that brought me too though). It was more about equipping our family to meet Mei where she was. It was about educating ourselves so we could advocate for Mei the minute she became ours. It was about meeting new friends so that our daughter knew others with limb differences and to have wise mentors. It was about continuing the conversation with our kids that we each were created to be our own masterpieces. It was about preparing our hearts to parent a child with lower limb differences and, most of all, a child who experienced great trauma and grief.

After waiting years (okay in reality, just a few months) she was finally in our arms.

The long wait melted away and there she was. Our family of four became five. We all fell in love with a spunky, comedic, beautiful, smart, and independent little girl. Our time in China showed off her strong and stubborn qualities that we knew served her well in the past and would serve her well in the future. She was my snuggle bug, by day and by night. Her adjustment was hard but we slowly gained her trust and love.

It was beautiful watching her blossom into our family… memories I hold so dear. Her love language remains simple: snuggles, dumplings, and painted fingernails. It doesn’t take long being around Mei to see she is the craftiest little thing ever, adding gems and ribbons to everything. She loves being the boss and adores her siblings. She’s, without-a-doubt, the exclamation mark to our family.

We quickly saw that Mei compensated really well for her limb difference. To others it was almost imperceptible and her walk had a cute little skip-and-a-hop due to the absence of an ankle and discrepancy in length. It fit her fun-loving personality quite well and, in some ways, would be hard to say good-bye to.

We knew we wanted to give her time to adjust before scheduling surgeries and around the six month mark, her gait became a safety concern as her limb length discrepancy was larger due to her rapid growth. She was tripping often and had trouble wearing shoes due to her foot deformity.

We knew surgery had to come a little sooner than we hoped. We sought out local orthopedic surgeons as well as nationally recognized FH surgeons and ended up having surgery out-of-state. Gulp.

In all honesty, there are parts of this season of life I’d rather not relive, but then I would be missing out on so many precious memories born from our time through this. As a mother, there’s a deep grief in watching your child struggle, enduring unexpected surgical complications, and not being able to wave a magic wand and fix it all. We knew so many families that chose this route and while challenging at times, we saw it worked. It was doable. It gave us faith.

In the end, fortunately, we did have a good surgical outcome and adore our surgeon. But the brutality of out-of-state surgery mixed with unforeseen complications took a toll. Medical intervention, while necessary, is still added trauma. Medical intervention with complications, just means more and more trauma.

Mei battled extra surgeries, an emergency flight back to her surgeon, chaotic ER visits, ambulance rides, hospital dosage mistakes, withdrawals, and a catatonic state that lasted several days. She fought hard through it all and earned the nickname Mighty Mei. She’s never lost that admired mightiness. Our bond grew closer as I never left her side, along with her daddy.

We had the most precious, treasured, one-on-one time with her through it all. Hours of stickers, singing, playing babies, movies, snuggles, kisses, bubbles, play-doh, and hospital wagon rides. We celebrated every victory together. We decorated her hospital room to add color and cheer and covered her hospital bed in stickers. We had her favorite blankets and toys. Her amazing siblings came to support and Facetimed when they went back home. Grandparents stepped up to the plate to help fill in the gaps. Her daddy took time off work to stay and make sure she knew she had not one, but two of us, loving her through it all. Her village cheered her on and mailed fun surprises to help boost spirits and healing, which was a welcomed gesture to keep things fun. Nurses brought homemade meals, smiles and encouragement. Adoptive parents in the area showed up at the hospital with food, care packages and shed tears with us. They were a gift and instantly became family in those moments.

Before and after this, I have watched other families handle big surgeries that seem impossible to go through as a parent, as a family, and for the child. I never thought we’d take on such surgeries but, as it goes, I wouldn’t change it for the world if it meant no Mei. I’d do it a thousand times over. In the end, it was doable. These surgeries aren’t impossible. Some of our very sweetest memories were born in those moments. She is alive and living her best life with us cheering her on.

I walk away from those surgeries with gratefulness. Extreme gratefulness. She walks away remembering how we spoon-fed her soup and watched Hello Kitty. She’s given us all a deeper sense of compassion, a fighting spirit and filled our hearts with irreplaceable joy.

Parenting a child with a limb difference, or visible need, has been a learning curve, but does not affect our daily lives. In fact, the only time it really seems to be a need at all, is at surgery time or addressing other’s questions. Mei wears an AFO, short for ankle-foot orthosis, which supports her new ankle, compensates for a weaker structure, and provides daily physical therapy for her range of motion.

Through a friend, we found we could put a shoe lift directly onto our AFO allowing it to become her main shoe. Mei currently has a 6 cm limb length discrepancy, meaning her FH leg is 6 cm shorter than her non-affected leg. At the present time, the combination of an AFO with a shoe lift has been ideal as finding shoes that accommodate AFOs, while buying two pairs due to foot discrepancy size, and adding lifts to each pair is quite the task. She loves wearing her AFO and lift and it’s proven to help her gait, strength, and limit pain. Her gait looks great and there’s nothing she can’t do.

We even found the cutest online shop that sells custom, handmade doll orthotics and the owner was kind and creative enough to add a lift to the AFO we ordered. (I have no affiliation with this shop. I just think it’s rare to find this and love the difference he is making through doll orthotics.)

I love how as parents, our passions quickly become about our kids and their interests and needs. I pretty much died when that baby doll AFO arrived and couldn’t stop swooning over it’s adorableness.

Mei is very self-aware of her differences and having a doll that looks like her, even down to medical accessories, warms her heart as much as mine and promotes self-confidence. She’s often seen wrapping colorful tape around her doll’s legs, nursing dolls back to health and pushing them around in a tiny doll sized wheelchair. She is learning how to answer questions that arise from friends and strangers with simple responses like, “I am missing a bone!” or “I have one big leg and one little leg!” while continuing to play as kids do. As her mom, I hope my responses to unexpected questions help guide her with grace and knowledge, but sometimes I think she helps guide me.

So far, Mei has completed phase 1 of surgery out of 3. Like us, our surgeon wants what’s best for Mei in all aspects so for phase 2, we are being flexible with treatment options. In the next couple years she will need to lengthen her FH leg or shorten her non-affected leg. She also needs a few “tweaks” to her FH leg, as surgeons say. To parents and kids, they often are not “tweaks”. We joke with our doctors about their optimistic language and get the low down from experienced nurses and families. We have surgeries hoping and aiming for the best, yet mindful of the worst.

We have learned how to better advocate within a hospital setting. Our past experiences have made us stronger, smarter, and most of all – closer. There’s no dodging the surgical route for Mighty Mei but, as in the past, we will be with our tender-hearted warrior every step of the way cheering her on and doing what’s in her best interest.

It’s safe to say, we’ve tackled external fixators, been wheeled off a plane on a gurney, had casts slip off after major surgery, had screws come loose in her tibia bone, snuggled in a hospital bed night after night, and had to figure out how to get back into a dark hotel room that I managed to lock myself out of at 11 p.m. Those memories brought us closer than we could have imagined in such a short time and I will always treasure them. Our memories don’t end there though.

We’ve also tackled hours of snuggles in our forever home, hundreds of Chinese dumplings, sparkly craft projects galore, purple hair, cooking lessons, birthday parties, and beach trips.

We are no doubt a little crazy, but we are crazy for each other.

And we think the crazy is perfect. So perfect, that there’s a part two to our story

– guest post by Natalie: blog || Facebook || Instagram

12 responses to “Joke’s on Me: Fibular Hemimelia”

  1. Bob says:

    So so beautiful ❤️
    So much love in this family.
    Inspirational 🙌🏼

  2. Nettie Pritz says:

    I love this!!!
    Thanks for sharing that sweet girl with us!

  3. Carly says:

    💜💜💜💜💜 …and I love part 2 of your story so much!

  4. Kim Palmer says:

    Thanks for sharing your beautiful story! It gives families hope and courage as they go through their journey. A wonderful loving family indeed!!💕💕💕

  5. Janna says:

    Natalie…you are the hands,feet and heart of God in Mei life. I believe as God formed you He knew you would love and care for Mei and Lottie. Your love for your children is evident in all you do.
    I am adopted and later we adopted my sister…i know what that love feels like.
    Thank you for sharing. I began praying a long time ago and will continue to lift up your sweet family every day.

  6. Christal Burnett says:

    Mei is so beautiful and so lucky to have you as a family. Your story is beautiful. And our family thinks ShishKBob is the bomb. And im so glad you found him. I will pray for your family and for Mei and her future.

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.