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Did your parents know about your AMC prior to birth?
No they didn’t know that I’d be born with Arthrogryposis. I was born in 1987 so Mom had one ultrasound that told her nothing significant. She knew something was wrong because I didn’t move or kick like my older brothers.
Were you born by c-section?
I was born vaginally with vacuum assistance. The position of my contractures didn't prevent me from being born naturally! I also was born w/o fractures. If AMC if detected prior to birth its now recommend a c-section is scheduled due to risk of fracturing the limbs.
How soon did your parents have a diagnosis?
My parents had a diagnosis before I left for the children’s hospital an hour away. The general practitioner in the hospital that night knew right away what I had because he worked in a NICU before. It was a miracle he was there because I was born in a 20-bed county hospital. He called the nearest NICU & he described my issues they confirmed what he thought. Initially they decided against transfer that night (I was born at 10:28pm) since I was breathing & eating fine but an hour later the NICU called back & said bring her now since AMC can manifest along w/ other more serious issues.
How Long were you in the NICU
I was in the hospital a total of 12 days, most of that in a step down unit. I came home in casts on my feet & splints on my wrists.
What tests did they do in the NICU
I had x-rays, an MRI, a general genetic test (to see what my chromosomes looked like, they were totally normal, no translocation, duplications or deletions) and an EMG with the recommendation of doing a muscle biopsy later. I had the biopsy when my hip was reduced & it showed anterior horn cell disease.
How did your parents handle the diagnosis?
They each handled it in their own way. Mom grieved & grieved & by the time I was 8 weeks old she had a nervous breakdown. She was eventually diagnosed with post-partum depression & started treatment for depression that had been present long before my birth. I'm not sure how it affected Dad, however unlike Mom he wasn’t going to appointments 5 times a week & wasn’t doing day-to-day care. The most reassuring thing Dad said to Mom in her time of deep sadness was “she is here, she is ours & we’ll take care of her”
If you are in need of mental health services to deal with your child’s diagnosis don’t be afraid to seek help, there is nothing to be ashamed of. Speak to your health care professional and contact your closest NAMI.
How were your siblings affected by the diagnosis?
My two older brothers were 6 & 8 when I was born. They knew something was wrong with me but my parents didn’t make it a big deal to them. My oldest brother said that growing up with me wasn’t that big of deal. And since he was a teenager when most of my treatment was going on he enjoyed my parents being gone. Now that we are all adults they are my rock. They help me with heavy lifting like when I move & they have driven me to Philly more times then I can count & stayed for weeks at a time in the hospital with me. Siblings are a gift to kids with special needs.
What caused your AMC? What type of AMC do you have?
I have Amyoplasia type of AMC based on presentation at birth. There is no known cause for Amyoplasia. Its sporadic in the population, meaning there has been no cases of a family having multiple generations with Amyoplasia.
Did you crawl?
I did not crawl, my contractures wouldn’t allow me & I didn’t have the upper body strength either. I also didn’t scoot instead I rolled all over the place.How old were you when you walked?
I walked at 23 months old with just an AFO on my right foot to maintain correction of my clubfoot. I could walk barefoot very early. My gait was not normal & I was extremely unsteady.Is Arthrogryposis Painful?
The joint contractures are not painful, at least for me they aren’t. Stretching & casting may cause some discomfort. At 22 I do not have any chronic pain in my joints but I am prone to arthritis early because of the AMC. Like anybody if I over do it physically I have pain but its nothing normal Tylenol can’t take care of.
Is there a cure for Arthrogryposis
Arthrogryposis cannot be cured or healed. It is a life-long condition. But it non-progressive, it won't get worse. Starting treatment early will help with outcome. Treatment should aim to make the child as functional & independent as possible in adulthood.
What surgeries have you have had?
Clubfoot release (equniovarus deformity)
Right Open Hip Reduction (dislocated hip)
Tendon releases on 4 toes (toes were curled)
Quadricepsplasty on Right knee (stuck straight)
Multiple trips to the OR as follow-up to this procedure
Bilateral Z-Plasty Thumb Releases (adducted thumbs (stuck-in-palm))
Transfer of Pectoralis Major to Right Arm (Lack of active elbow flexion)
Right Midfoot & hindfoot osteotomies w/ Ilizarov Application (severe relapse of clubfoot)
Multiple trips to the OR as follow-up to this procedure
Right Tibial & Fibular osteotomies w/ Ilizarov Application & a pernonal nerve release for 6 cm leg lengthening (R Leg 2.3 inches shorter than L)
Multiple trips to the OR as follow-up to this procedure
Right Proximal Femoral Derotational Osteotomy (External Rotation of my leg (frog-leg positioning) Multiple trips to the OR as follow-up to this procedure
Right second toe Osteotomy w/ pinning for fusion of the 2nd joint (hammer toe, wouldn’t straighten)
Did you attend a regular school?
I attended Early Intervention preschool birth to three & then a integrated preschool ages 3-5. From Kindergarten through twelfth grade I was in a regular education classroom with the necessary supports for my physical limitations.
What accomodations did you have in school?
This is NOT a comprehensive list though:A one-on-one aide in Kindergarten
Playground aid K-3
Coat Hooks & cubbies lower & easily accessible
Desk closest to the door
A chair to sit on during circle time
Extended time for testing and reports
Using a computer for written work
Line leader always or at back of line to minimize falling
Whole class used the ramp and teacher instructed to walk slower
Leave early during classroom changes
Three sets of textbooks in High School: Home, Locker & classroom
An extra step provided so I could get on the bus.
Are you difficult to get an IV into?
Its extremely difficult to get an IV into me. Usually takes more then 10 sticks. As a child I was put under with gas before an IV was inserted. More often then not it ended up in my neck. As adult, it’s too dangerous to put me under with gas and no IV access. If it’s a planned surgery I get a PICC line inserted a few day before. If a PICC line cannot be placed a procedure called a “cut-down” must be done.
A PICC is basically a central line in the arm. A cut down is where a surgeon feels the vein & than applies local numbing medicine via an injection, makes an incision & finds the vein. Once the vein is found an IV is placed & its sewn in. This is a “last resort” procedure.
Examples of just how hard of a stick I am:20 sticks one time in an hour and a half- ended up with a central line after I was out
45 mins of sticks after I was put out & it ended up in my forehead because it was short surgery
3 hours trying to get a PICC line in & it was unsuccessful anyway
1.5 hours to do a cut down & it STILL took 3 different attempts in the vein to start the IV
Do you remember therapy, surgeries, splinting?
Yes I remember the therapies, surgeries ect but it was just part of what I was used to. The therapies were no big deal to me as a young child but the older I got the less I cooperated about going. I remember the surgeries & those weren’t pleasant experiences but I got through it!
Who were/are your doctors?
My first lower extremity pediatric orthopedic surgeon was at Toledo Children’s Hospital. He did my clubfoot surgery, toe releases, quad plasty & open hip reduction. He doesn’t know Arthrogryposis very well so 3 of the 4 ended up failing at some point or making the joint worse. I stopped seeing him at age 8.
My upper extremity surgeon was Dr. Robert Hartwig out of Sylvania, Ohio. He did my bilateral z-plasty thumb releases & my muscle transfer. HIGHLY RECOMMENDED
My second lower extremity pediatric orthopedic surgeon is Dr. Harold van Bosse out of Shriners Hospitals for Children in Philadelphia. He specializes in Arthrogryposis and works at Shriners Philly Arthrogryposis Specialty Clinic. He recorrected my clubfoot & lengthened my leg using the Ilizarov technique. He also recommended doing the proximal femoral derotational osteotomy which was preformed by his partner Dr. William Schrantz along with a toe fusion. I continue to see both surgeons. BOTH HIGHLY RECOMMENDED
What age did you stop therapy?
I stopped regular private therapy once I entered Kindergarten because the school was providing OT & I wouldn't cooperate w/ the school PT. After any surgery I did intense therapy as well. I stopped receiving any therapy at school in 3rd grade per my request because I hated being pulled out of class for it. I learned to adapt to my limitations better on my own by that age.
Is your type of Arthrogryposis genetic?
My type of AMC is not genetic in anyway. I have Amyoplasia type. Amyoplasia is sporadic in the population. This means that my parents didn't pass it to me and I won't pass it to any future children. Many types of AMC are genetic though.
Why are your hands like that (referring to persistent flexion contracture)? Can’t they fix that?
My hands are stilled ‘clubbed’ because this is the position in which I can do most activities. If I had surgery to straighten my wrists I would loose finger function and the ability to do a lot of things like feed myself, type, write ect. But yes a surgeon could straighten my wrists but due to the muscle loss my hands wouldn’t be normal.
Do you drive? What accomodations do you have in your car?
I drive an unmodified car. However, I do need power steering, automatic transmission, moveable steering wheeling, power seats, windows, locks and the shifter needs to be on the steering column.
Do you have feeding or breathing issues & have you ever?
I have never had breathing or feeding issues. My jaw is unaffected & I could eat from a bottle from birth.
Did the AMC affect your size? Like height & weight?
I’ve always been either average weight or overweight, never underweight. This is very atypical, most kids wity Amyoplasia are underweight. Their is growth chart for kids with Amyoplasia in the AMC Text Atlas. My overall adult height has been affected by the AMC. I am only 5 foot tall. My parents are both taller then this. The AMC Text atlas says most AMCers tend to be 4-8 inches shorter then the family height. This holds true for me.
Do you have pain now?
I do not have any chronic pain but I’m prone to getting Arthritis early because of the AMC & most of my female relatives have arthritis.
Do you have scoliosis? Or anything wrong with your spine?
My spine has always been straight. I do however have a condition called spondylolisthesis in my lower spine. It causes me no pain & isn’t getting worse.
Will you be able to have kids?
If I want to have children, there is no medical reason I can’t have children. Pregnancy may put strain on my body & I may have to have a c-section. Most adult women with AMC have normal healthy pregnancies & deliver healthy babies.
Questions? Comments? Suggestions?
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The opinions and views expressed here are mine and mine ALONE. Furthermore, all comments on this page are opinions and are based on my experience and should not be considered medical advice or a substitute for talking to your doctor or therapist.