Wednesday, December 16, 2009

Adopting a Child with Arthrogryposis

From the very first moment I laid eyes on Evan, I knew he was supposed to be our son. I had not read his description, I did not know of his medical condition, I just knew that he was ours. I also knew that, no matter what that description said or what his medical condition was, we would be bringing him home. Impulsive? I'm sure that is sounds that way. In fact, thinking back on that day, that moment, even I am a bit surprised at how easy it was to make that commitment without knowing a single thing about arthrogryposis or what the future would hold for Evan and for our family. I wish that there were words to explain what "knowing" feels like, but I have never truly been able to find words adequate enough to describe that experience. The fact of the matter is, I just "knew" and once you know, you walk the path that is stretched out before you, knowing that Heavenly Father will guide your footsteps every step of the way. . . because He "knows" too!

Our first picture of Evan


Once we had made the official commitment to bring Evan home, I began looking for any and all information about arthrogryposis. What I found was disheartening. Everything I read described a bleak prognosis and poor quality of life. What would Evan's life be like? Would he even live past childhood? If so, what would his quality of life be like? Would he ever be able to live independently? While our commitment to bringing Evan home never wavered, our hearts were heavy.

Shortly after commiting to bring Evan home, Richard and I found ourselves watching "America's Got Talent." It was the first time we had seen the show. Almost immediately after we had tuned into the program we were shocked to hear the word "arthrogryposis" cross the lips of the show's host (prior to commiting to Evan, we had never heard of the condition). We were riveted to the screen as Luca "Lazylegs" Patuelli, a break dancer with arthrogryposis, was introduced. We continued to watch as Luca performed with his group, break dancing with the aid of his forearm crutches. It was one of the most incredible and inspiring things I had ever seen and it was exactly what I needed!

Armed with new motivation, I got back on the internet and began looking for "real people" who were living with or raising children with arthrogryposis. Within the first five minutes of my search I found myself at AMCSupport.org, an organization dedicated to providing support for individuals and families affected by Arthrogryposis Multiplex Congenita (AMC). I did not realize it at the time, but the people I would meet there would become my family. "Real people" living with and/or raising children with arthrogryposis, who would be there to encourage and support me through every step of our journey.

I quickly registered to become a member and made my first post to the forums, introducing myself, my family and explaining that we were just beginning our journey with amc by making Evan a part of our family. Within an hour I was in contact with Tracey, MaryBeth and Michelle, who all lived within an hour of me and who would become my mentors (and some of my greatest friends).

We were completely naive to what it would require to raise a child with arthrogryposis. When we brought Evan home, our triplets were approaching their 3rd birthday. All three of them were healthy (with the exception of eczema and asthma), so raising children with special needs was a completely new experience for our family. We had done our research, but no amount of research or preparation could have really prepared us for what it would be like once Joshua and Evan were home.

When we arrived home with Evan in December 2007 he was 3.5 years old. He had received no medical treatment in Ukraine and had spent those 3.5 years lying in a crib, day in and day out. He was unable to sit unsupported, his feet were severely clubbed, his knees and arms were in flexion contractures (locked in the bent position), his hips were externally rotated and he had no use of his arms and hands. We were overwhelmed by all of the care that he would require, but we still "knew" that he was our son and we knew that our Heavenly Father would provide a way for us to provide for him.

Shortly after returning home with Evan, the initial barrage of medical examinations began. Tests, xrays, and evaluations dominated the first several months home. Physical and occupational therapies were soon a part of our schedule multiple times per week. In April 2008, Evan had surgery to correct his severely clubbed feet. That surgery was not without complications. Two weeks after his initial surgery, it was discovered that the incision on his left foot had become infected and the effected skin had to be removed. He was hospitalized for a week on heavy antibiotics and was on wound vac therapy for over a month.

Shortly after we attended our first AMCSupport Convention (July 2008) we made the decision to travel to Shriner's Hospital for Children in Philadelphia, PA (a 10 hour drive) to receive treatment from Dr. Harold Van Bosse, an orthopedic surgeon who specializes in arthrogryposis. Our first visit to Shriner's in Phildelphia in September 2008, was an eye-opening experience. It wasn't until we had seen Dr. Van Bosse that we realized what substandard care Evan had been receiving (while most orthopedic doctors have heard of arthrogryposis, very few of them actually have experience treating it). From September-November 2008, Evan's feet were serial casted to achieve maximum correction (which, unfortunately, had not been achieved by surgery alone). When the serial casting was complete, Evan received his first set of KAFO's (Knee, Ankle, Foot Orthotics) which helped to maintain the correction of his feet and provided support. He was in these KAFO's 23 hours per day (out for bathing and stretching).

In March 2009, Evan had bilateral femoral osteotomies (both femurs were cut and the bones were rotated to face forward and pinned in place).

Evan in the PICU following Bilateral Femoral Osteotomies in March (note the cow cast :-)

Once the bones were healed, Evan went back into KAFO's and began intense physical therapy to get him up on his feet for the first time in his life! By August 2009, Evan was able to stand in his walker unsupported and had taken his first assisted steps.

"Thrilled" to be standing!!

Unfortunately, due to ongoing problems with his KAFO's, Evan's feet began to regress and turn back in, so at the beginning of November we began our second round of serial casting on his feet so he has had to take a short break from "walking."

Evan's 2nd round of serial casting, 3rd set of casts (these are the casts he is currently "sporting"!)

In the past two years, Evan has had 3 surgeries, been in 11 sets of casts, had countless physical and occupational therapy sessions and will be making his 21st trip to Philadelphia next week. He has come from not being able to sit unsupported to being able to stand and walk with support. He still needs complete assistance with many things such as bathing, dressing and using the bathroom, but he is making strides towards independence in all areas every single day and boy does he amaze me with his creativity in doing these things. He is incredibly smart, has the biggest vocabulary of any 5 year-old I have ever met and he makes me laugh every single day. The past two years have been some of the most challenging years of my life, emotionally and physically, but they have also been two of the most amazing years of my life!

Evan is pure sunshine. He lights every corner of our lives and my life is amazing BECAUSE he is in it. If you think that I am biased because I am his mommy, ask anyone who has the privilege of knowing him and they will tell you the same. Evan is truly a gift!

Are you considering adopting a child with arthrogryposis? If so, there are a few things that you should know. First, arthrogryposis is a lifelong condition. It is not reversible (it is also not progressive or degenerative), but it is absolutely treatable. There will be countless therapies, surgeries, and doctors appointments. Your house may closely resemble a warehouse for medical equipment. . .wheelchairs, walkers, gait trainers, AFO's, KAFO's, and other assisted living devices. There will be many sleepless nights and countless tears will be shed. You will have to learn to think outside of the box to help your child achieve their full potential (although, in reality, it will likely be THEM teaching YOU to think outside of the box :-) and you must be prepared to advocate for your child for their entire lives if necessary.

You should also know that your perspective on life will change. You will be inspired every single day. You will smile, you will laugh, you will cry tears of joy and sing, dance and shout in celebration of every accomplishment. Your heart will overflow with gratitude as you witness the ability of your child to change the lives of every single person they meet and you will fall to your knees on a regular basis and thank your Father in Heaven for blessing you with such an incredible and amazing child.

And. . .you will never have to walk this path alone. . . .


Would we do it all over again if we had the chance? Well, we are! In 2010, Evan will welcome home a brother with arthrogryposis (and two sister's with other special needs) and we know that we are blessed to have the opportunity to raise, not one, but two amazing AMCer's!

There are many children with arthrogryposis who are still waiting for forever families to help them achieve their full potentials. Could you be that family?

Aaron- Eastern Europe


Igor- Eastern Europe


Anya- Eastern Europe

Grady- Eastern Europe

Elizaveta- Eastern Europe

Madeline- Eastern Europe

Jordan- Eastern Europe (he reminds me SO much of my Evan!)

Want to know more about Arthrogryposis? Click here or here.

If you are considering adding a child with arthrogryposis to your family please take some time to do the following:

1. Talk to medical professionals who have experience treating children with arthrogryposis. Shriner's Hospital for Children in Philadelphia (Drs. Van Bosse and Kozin) and Dupont Hospital for Children (Dr. Jay) in Delaware both have well established Arthrogryposis Clinics and doctors/therapists who are truly knowledgeable about AMC and didn't just "read about it once" in a textbook in medical school.

2. Join AMCSupport.org . The best way to learn about what it is like to live with AMC or to raise a child with AMC is to talk to those who are doing it. Here you will meet real people and families who live with AMC every day.

3. If you are interested in learning more about any of the children pictured above, please visit Reece's Rainbow.

33 comments:

Molly said...

You are fantastic!!! I'm going to put this whole post on my blog! I'll link back to you of course!

ashleypmo said...

I know what you mean about "just knowing." From the minute I laid eyes on Juliana, I knew. It didn't matter what her medical records showed, I just knew.

ChaneyM said...

My little girl is coming home on Monday! :)

Lynn said...

You don't know me, but a friend linked to your post and it was the best thing I have seen today. Praise God for leading and supporting you in your family's journey!

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Mandy said...

This is an awesome write-up Valerie!
May God bless your family and your new little ones :)
Mandy

Rebecca said...

Hello, I just found your blog. I work for a woman in her fifties with arthrogryposis. She is able to live independently, but in the last decade has needed a home health care worker in the mornings. She is very intelligent and doesn't let this disability get in her way.

Good luck in this new experience.

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Anonymous said...

Sylvie,

Thank you for sharing your story,it is so uplifting.

I am currently pregnant of identical twins in which one twin was recently diagnosed with arthrogryposis. We were baffled, confused and scared. The doctors just kept telling us that the baby would die and that she would not have any quality of life. We began doing research on the internet and soon realized that children with arthrogryposis do lead normal and productive lives. Knowing this has helped us a great deal. Thank you also for mentioning clinics and doctors who actually specialize on AMC. We live in Europe and unfortunately do not have doctor nor clinics with this speciality.

Hope all the best for Evan and the twins. I am sure that the children will have great lives because of the fantastic parents that they have!!!!

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