Avenues Survey on Motherhood and
The following survey was developed by Avenues to gather some
data on the implications of arthrogryposis for childbearing and
child rearing. John Sneddon placed the survey on the Internet
to allow persons to respond to the questions directly. This was
not a random survey, since those who chose to respond may not
have been typical cases. Also, there is a wide range in the severity
of arthrogryposis, which was not measured by the survey. However,
the responses do offer valuable insight about what to expect for
those with AMC who may be pregnant or thinking of becoming pregnant.
In total, 21 responses were received. Of those, 17 did not know
the type of arthrogryposis that they had or did not state. There
were two cases of distal arthrogryposis, one Amyoplasia, and one
“genetic.” In total, 34 children were born to the
21 women. Nine of the respondents had had more than one child.
The average age of the women at the birth of their first child
was 24 years. Of those who responded, 7 were currently in their
twenties, 10 were in their thirties, 1 was in her forties, 1 in
her fifties and 2 in their sixties.
Of the 34 births, 15 were carried to term, 7 were not carried
to term, and 12 did not state. One of the 34 died at the age of
7 months of unknown causes. 20 pregnancies were listed as having
no complications. In 9 pregnancies, problems with balance or mobility
or driving were mentioned. Of those, 3 women mentioned using a
wheelchair during part of their pregnancy. In 5 pregnancies, problems
not related to arthrogryposis were mentioned, e.g. high blood
pressure, morning sickness, low platelets. 2 persons mentioned
back or hip pain.
7 respondents mentioned getting some additional help during
their pregnancies from parents, husbands, or other caregivers.
Most reported no added help during their pregnancies. Most reported
no medications or supplements taken during pregnancy, other than
the usual vitamins. One person mentioned getting pain medication
for her back pain.
Of the 21 women, 13 had their children by Caesarian section,
while 8 had vaginal deliveries. In general, delivery complications
were few. Several women mentioned that labor failed to progress,
leading to a Caesarian section. One woman mentioned that the cord
was wrapped twice around the baby’s neck. None mentioned
any particular adaptations for the delivery. Several mentioned
the pain of recovery from the C-section. 14 of the 21 women described
their recovery from delivery as “normal” or “quick.”
4 mentioned a slow recovery.
Of the 34 children, 4 were born with arthrogryposis. These four
were born to two mothers who described their arthrogryposis as
“genetic” or “distal” types. One additional
child had developmental delays and some bone and joint abnormalities,
but the condition had not yet been diagnosed. One other woman
with distal arthrogryposis gave birth to a child that did not
6 women breast-fed their infants; 7 used a bottle and 6 used
both. With regard to child care, the most common adaptation was
the use of a stroller to carry the baby (5 cases). Two persons
mentioned using a
high mattress to aid in changing and dressing and lifting. One
did most tasks on the floor. The most-often mentioned difficulties
with child care were lifting or carrying children (8); bathing
(5); buckling car seats (3);diapering and dressing ( 3); opening
bottles and jars (2); and breast-feeding (2). 9 of the 21 women
mentioned getting extra childcare help from some source, either
from a spouse, parent, friends, or hired assistant.
In general, it appears from this survey that many women with
arthrogryposis do successfully give birth and raise children.
There are certainly challenges, but those who answered the survey
seemed to find ways of dealing with most problems.
Here are some excerpts from the surveys:
I am 26 and have a beautiful 9 month old boy. Being pregnant
and having AMC is really not that different from able-bodied
women. I did have problems with swelling in my feet to a great
degree. Also, you’ll want to make sure your gynecologist
or physician has an examining table that you (or a host of people)
will be able to get you onto. I always had my doctor and boyfriend
help. Transferring in and out of a vehicle (depending on what
you have) will begin to be more difficult in your last trimester,
as will driving (if you drive). I found my belly sticking out
to far and hitting the steering wheel.
I too delivered by C-section due to my anatomy being shaped
wrong, whether this was because of my AMC I’m not sure.
I also had genetic counseling and a Level 2 ultrasound (more
in depth) done. It was determined that my baby didn’t
have the disability more than likely. Well, he was born healthy
and happy and was examined by numerous doctors to make sure
nothing was wrong. My main advice to you would be to make sure
your doctor is supportive, able to listen, and willing to learn.
Mother, age 61:
I did things on the floor, like changing diapers because it was
easier. Keeping up with my second child [was difficult]. She was
everywhere. [I left] my children at the…hospital when my
daughter was three months old. She had pneumonia. I was told by
doctors to get her away from them. She wasn’t worth the
trouble to save, they thought. I found a doctor before it was
to late. The child is writing this for her mom.…The baby
they said wasn’t worth saving is married for 22 years, wrote
a fiction unpublished novel and is a home health aide…They
tied my tubes to make sure I didn’t have any more children.
I was given a powder to drink to stop having babies. I flushed
it and told my husband I took it. The child I wasn’t supposed
to have is typing this for me.
I am a 33 year-old mother of 3 girls, ages 13,12,10 1/2. I
have AMC. I am just finding out what it means in medical terms.
At 18 I lost my first child, a boy at 7 months. The reason was
not explored.…I have been a single mom most of the time.
It seems to get harder as I get older. I hurt more and am tired.
I’ve always been very independent. I just moved back by
my family after many years living in a warmer climate for my
AMC. I am finding out the later years are more challenging.
By the way, my hips were the least affected by AMC.
Mother, age 37:
I was glad to have my husband. For some reason I didn’t
think of having a C-section as having surgery, I was having
a baby. I was most distressed to find out that I couldn’t
move or walk without pain. I know this is normal, but I just
didn’t think about it till that moment. Things were better
in a few days. I use canes to walk and I had to remind everyone
to keep the floor DRY at all times not even a drop of water
on the floor. I would have been hurt badly if I had fallen down…
I used a small stroller in the house as well as outside. There
is no way for me to walk and carry a baby. I do use canes outside
the house but not inside. It was still necessary to use the
stroller. When they started walking my Mom got me a hand safety
harness. Playschool toys makes these. It goes from my hand and
the child’s hand. Many non-disabled parents use these
too. I used it until my children understood that they had to
stay at my side and not run, and that when I said stop, they
stopped. So far we have a very normal household. Nothing out
of the ordinary. The things that I can’t do with the kids
my husband does, hiking, biking etc. I do however take them
to Bible camp every year. My daughter and son set up the tent
on their own. No small task, it’s an 11ft.x12ft.! For
the most part they are VERY good kids. I do wish that I could
do more things with them (I would never tell them that). For
the most part if there are things that I can’t do, someone
is always around that can do it for me. I do take extra care
to be sure that I don’t get into a situation that I can’t
get out of by myself. I sometimes wonder if my kids will be
too careful but so far that doesn’t seem to be the case.
Mother, age 34:
…I wanted to be treated as normally as possible. I needed
more assistance with some daily chores later in the pregnancies.
My balance was changed. I needed some help getting up sometimes…We
did not put the wheels on the crib so that I could reach easier.
We left the mattress high. I also used the bottles with the
hole in the middle. This was much easier for me than the traditional
bottles. I had diapers in every room of the house so I would
not have to walk around so much to change her. I found bathing
an infant a slippery ordeal. We used the infant bathing seat
to assist me.
I tried to buy outfits with large openings and snaps at the
crotch to make dressing easier. I tried to prepare as much before
hand so that everything was right where I needed it. I was not
able to carry my children around. I used an umbrella stroller
vs. the large fold-out type. They were too bulky and large for
me to handle. My children, now 9 and 5, are probably more relied
on than most children. My 9 year old is taller than I am and
does a lot of my reaching for me. When they were younger I tried
to schedule appointments when I knew someone could go with me
to help out. I had a hard time unbuckling car seats. I did not
carry my children in an infant carrier. We haven’t dealt
with teenagers yet. Say prayers please. I tried to go shopping
with friends that didn’t
mind helping out. I have good friends. My family was very supportive.
Mother, age 61:
…Pregnancy adaptations: utilizing a wheelchair (which
I do to date) but I still walk with the aid of crutches and
long-leg braces. [My recovery was] quick/responsive enough that
13 months after my 1st child was delivered, I delivered my 2nd
child. I created ways to make motherhood simpler within the
home. Thinking back, the only thing I was really not able to
do is carry my child outside my home. Once they took their first
steps and began walking, I never used a carriage. They walked
beside me, (grasping onto one of my fingers as the rest of my
fingers were grasping onto the handle-grip of a forearm crutch.
I literally spent days on-end in the home unless someone came
in to relieve me to transport the child into a vehicle. Toddler
time was more fun chasing them around the house to make sure
they weren’t into things that could be dangerous. Generally
they were self-sufficient children (independent) and helpful—the
older keeping a watchful eye on the next. As the teen stage
became a fact of life in our home, I took on an extra job of
Mother, age 35:
Child care complications: The only difficulty was caring for
them at the infant stage. It was more difficult for me to pick
them up, carry them, etc. than for a person without AMC. Overall,
I did very well. That was my biggest worry, and I managed to
deal with it.
Mother, age 28:
Adaptations for childcare: Custom-built seat for my wheelchair,
flexible nursing-table, adaptations made for the stroller -
so that it might fit my wheelchair…
Child care support: Personal assistant, 20 hours/week in addition
to my husband.
Mother, age 29:
Child care complications: The only complications thus far (my
child is 8 mos. old) is the heavier he gets, the more difficult
it is for me to carry him. Also, it’s difficult to bend
down and pick him up. I worry that I am going to drop him, etc.
I rely on the baby’s father a lot. He carries our baby
around much more than I do.
Mother, age 43:
Adaptations for childcare: Adapted a walker on a rope to pull
her around house after she outgrew her pram. Using Osh-Kosh
overalls made it easier to pick her up. [I had] trouble dressing,
bathing, diapering, opening-closing bottles, hard to hold on
to her in public, used leash type restraint for
her safety. She also rode on my lap in my electric wheelchair.
I had difficulty with car seats and strollers and clothes. If
it was baby proof, I had difficulty with it. Hard to go anywhere
alone, could not open a car door while holding her etc…Very
frustrating. Other non-disabled moms were not too keen on including
me in group activities, parks, walks etc. My mom and husband
helped a great deal until [my daughter] was 12 months old and
could walk. It became much easier after she could walk.
Mother, age 35:
Pregnancy adaptations: I did not have to make any adaptations
per se, but the last month or so my stomach was so large (and
my reach not long enough due to AMC in part) that I could not
drive the car and the nurse had to help me put on my socks and
tie my shoes after my ob/gyn visits. I also remember having
to use a wooden spoon to reach the light switch on/off over
my kitchen sink (again due to limited reach). I needed a fair
to moderate amount of support from family (husband) because
as the baby got larger (delivered at 8 lbs. 9 1/2 oz) reaching
things and general mobility became increasingly difficult.
Adaptations for childcare: The only real adaptations I made
for child care was to always have her high enough (i.e. mattress
in crib or bassinet) that I could “scoop” her up
with my “good arm” and then go sit down and position
her appropriately. I could not lift her straight out with two
hands. When I got to the daycare, the provider would always
lift her out of the playpen and hand her to me. I had already
cracked the car door open so all I had to do was grab the open
side and use my body to open it fully while I held the baby.
We did have a little bit of a hard time finding a car seat that
I could operate.
Child care complications: Complications while caring for infant/child
included not being able to open the baby food jars (had husband
do it). Also, I could not carry her with me when we went places
(just me and her)- ALWAYS had to use the stroller - even for
quick stops/errands because I needed my arms (only one works
very well) to open the doors, carry the packages, get change,
etc. and needed the stroller to carry the baby, diaper bag,
and any items purchased when shopping etc. I also adapted by
pulling in front of the windows at the dry cleaners and leaving
her in the car and watching her and also using the wonderful
“pay at the pump” when I had to get gas in the car
etc. As she got older she was trained to stay in the stroller
or hold hands - I could not run fast enough after her if she
was to dart off. I also briefly used one of those elastic bands
that goes from the mother’s wrist to the child’s
wrist when we were in crowds/the mall etc. Some clothes for
infants/toddlers had small buttons but mostly I tried to only
buy clothes for her that I knew I could handle (lots of elastic
waist bands) and velcro shoes were a great invention!
Child care support: I was not really able to safely bathe the
baby for months - did not feel comfortable until she could sit
up on her own. I have limits anyhow and then to add a slippery
wet (sometimes crying) baby to the mix was too much and basically
I didn’t feel the risk was justified by the effort it
would have taken. Again thank God for my wonderful husband -
he did it! I needed special support from my husband the most
(especially in the beginning when she was so small) that just
understanding that day-to-day activities (with AMC) such as
getting dressed take longer etc. so when adding a baby to the
mix frustrations from a physical standpoint can be increased
a lot (caring for 2 with the baby needing EVERYTHING done for
her) and any help in that area was greatly appreciated. As she
has gotten older those concerns have all but disappeared because
she can either cooperate better for me to help her or she can
do it herself.
[Editor’s note: The decision as to whether arthrogryposis
is one of the "covered" conditions under MDA is made
by each local chapter. A letter from your doctor explaining that
arthrogryposis is a type of neuro-muscular atrophy may help to
make your case. You might also mention that arthrogryposis is
a covered condition in the view of MDA of Canada.]
[back to top]
From Families Around the World
Hi, my name is Missy. I am in the 8th grade at Hand Middle School
in Columbia, SC. I am 13 years old and I have arthrogryposis.
My interests are reading, swimming, guys, singing, acting, and
going to the mall. I am very interested in talking to kids around
my age about what kind of surgeries they have had and their interests,
etc.... If any people my age or younger or even older need to
talk to any one, I am a very good listener and of coarse a great
talker. If any people my age need to talk about something that
they feel that they cannot tell their parents I will listen.
10740 43rd St. N., Unit 401
Clearwater, FL 33762
A friend printed information from the Internet regarding Arthrogryposis.
I am 66 years old, female, and have had it since birth. One doctor
said I have a mild case but, lately, I have been having problems
with tendonitis in my shoulders and neck, also slipped disks in
my back. Also, most recently, breathing problems. Short of breath.
Doctors tell me I have restrictive lung disease. If you could
send me more information on this subject, or perhaps there is
a support group on the East Coast (a little closer), I would appreciate
It was genetic in my case. My son was born with it in 1960. That
is when I knew the name of the condition, because the doctors
had no name or knowledge of it in 1932 when I was born.
My daughter is 1-1/2 years old and has Distal Arthrogryposis
and had been in therapy since she was 3 months old. She had vertical
talus surgery at 8 months, was casted for 3 months, and she is
now walking beautifully and into everything! The question that
no doctor can answer is the height and weight potential for Distal
Arthrogryposis children. Hall is very petite - 17 lbs. And 29
inches long. She is in proportion but is just very small. I would
love to hear from anyone that has a D.A. child and any information
on the potential size of these children.
871 Middlesex St. #5
Lowell, MA 01851
I’m writing this letter about my children. Anthony and
Marissa are both affected with arthrogryposis. Their father also
has arthrogryposis. Anthony is four years old. He is in his second
year of preschool. His wrists, hands, hips, knees, feet are all
affected. He walks now with little trouble. He has P.T. and O.T.
4 days a week. He is a very happy and active child.
Marissa is two years old. She has a more severe case. She does
not stand. She scoots on her bottom to get around. She had had
many surgeries. She has been fitted for a wheelchair recently.
Her doctors believe her chances of walking are 50-50. She is a
very happy girl. If anyone is in this situation, or has been in
this situation and would like to talk, please contact me.
5153 W. Argyle St.
Chicago, IL 60630
Thanks again for Avenues. I wish my mom had known the good you
are doing for all AMC children. Mom was born in 1903, with AMC.
Nothing was known about AMC. The doctor said she wouldn’t
live to be two, then six, then twelve. We lost Mom at 65.
Sandy, now 37, still works at the bank. She has her own desk
and computer. She uses the eraser end of a pencil to punch the
keys. She’s fast! Sandy bought her own home last year. She
is now looking to buy a new car. George and I are retired and
1415 Lake Crest Dr.
Alexandria, MN 56308
Greetings from Minnesota. Wade took a call last June to a Lutheran
church here in Alexandria. Of course, this meant we had to find
a new spine specialist for Bryan (remember we adopted him from
Ecuador w/arthrogryposis, scoliosis, and kyphosis in 1995). Dr.
Benson(supposedly) was his doctor at the University of California,
Davis, although we hadn’t seen him personally for a year,
perhaps even 18 months. We got some recommendations from him and
went to see Dr. Lonstein at Gilette Children’s Hospital
in the Twin Cities. About August, I could see that Bryan’s
curvatures were worsening and so I dreaded out first visit.
We finally got in at the end of October and his scoliosis was
65 degrees and kyphosis was at 95 degrees. That was about a 10
degree change for each from May. Dr. Lonstein recommended surgery
within the next six months. After getting over the initial shock
of such news, we set the date for surgery for Jan. 20. So by summer
Bryan could go out and play.
On Jan. 20, Bryan had a posterior/anterior spinal fusion of
T1-T12. They had a hard time intubating him because the arthrogryposis
has limited his head/neck area. He came out of surgery just fine
but in a body cast and halo. He was to be in ICU for 3-4 days
but ended up being 7 because they didn’t want to pull the
breathing tube until they were absolutely sure it would be OK.
Jan. 31 we finally got to go home and start the healing process.
Bryan had to lay flat in his body cast/halo for 3 months. Yes,
it sounded like an impossible task, but Bryan met the challenge(as
he always has) with a determined spirit. On April 13, the cast
and halo was removed and they fitted him with a Milwaukee brace
which he wears 24 hours (except for bathing) for the next year.
He has gained back most of his mobility and speed and never complains
about his brace. God had been so good and Brian is a blessed boy.
208 Wellington Street
Collingwood Vic 3066
My name is Lina Pane-Hawkins. I am 32 years of age and I was
born with arthrogryposis. I'm from an Italian background and have
a very supportive and extended family. My life so far has been
as normal as you can have.
I've just recently accessed Avenues on the Internet and its been
so amazing to me to find so many people in the same situation
and you are so lucky to have an avenue to access. In Australia
there is nothing like this. So far I have only met two other people
with similar disability however they are both male, therefore
the experience is so different.
I want to share some of my life to hopefully illustrate that
just because you have a disability doesn't mean you can’t
dream and achieve that dream. All you need is the desire and to
think outside the square!
I am a qualified social worker. I work for a disability organisation
and help people with disabilities achieve their dreams. I am also
a published writer in disability and women's issues and ethnicity.
My goal is to make a difference and I try to achieve it in my
I also drive. This was my greatest achievement. I have a gorgeous
red car fully modified like a "space ship" that gives
me my greatest independence. I've now been driving for ten years.
I've traveled overseas three times.
I recently got married to the most gorgeous man, and hopefully
one day soon we would love to have a child. This is where I hope
another woman has experienced this wonder and wouldn't mind sharing
with me. Anyone with any information would be received gratefully.
As you can see I'm living life, not a life sentence. I won’t
say that its been easy, mostly tough, but I wouldn't have my life
any other way and if I had a choice to live my life all over again
I wouldn't change a thing as it has given me more opportunities
than any 'able bodied person' could achieve.
So if you have arthrogryposis or are a parent or family member
or friend, remember that anything is possible and dreams can come
true. I'm living truth as not many people believed that I could
achieve what I have. From a child that couldn't walk and having
7 different operations until teenage years, then walking on her
own unaided and doing her own personal exercise and weight training
to today, achieving her dreams. All you need is determination,
a streak of stubbornness, positive attitude and dreams and of
course people who believe in you.
149 Birkett St,
I wrote to you roughly two years back in which you kindly responded
by sending me a video and a booklet of information. At that time
I was just coming to terms with the diagnoses of my daughter and
feeling very shell-shocked so I never replied to say thank you
and join your support group.
My twins are nearly four now and I have dealt with the reality
of it all and stopped looking for miracle cures and mis-diagnoses.
I would very much like to join your support group.
I would also like your help in finding other parents of twins
affected by AMC. As Perth is small in population, AMC is very
rare here and I have not been able to find anyone with affected
twins. Only one of my girls is affected but the ironic thing is
they are identical, we have the DNA test to prove it. Ellie is
only affected below the waist- both hips, right knee and right
I look forward to your correspondence. My husband has a email
address at his work if this would be easier and quicker for you.
He can be contacted on mark.busher@water corporation.com.au. If
you are able to find any parents of AMC twins you can gladly pass
the above address on.
4197 Pullman Lane
Austell, GA 30106
Hi! I finally feel I have found something that may explain our
2 yr. old's condition. We have been limited by lack of medical
information available on her, we adopted her from Peru when she
was 15 months old. She was born with gastroschisis that was surgically
repaired when she as 36 hours old. It was noted in her chart that
she had a paralysis of her left arm. It was treated as a brachial
After getting her home, we noticed so many things, her shoulders
rolled forward, she had no creases on the inside of her elbows,
her left hand turned out and the fingers contracted. Her right
hand was better, but something was off about it. She could not
bring food to her mouth without help. She could not lift her arms.
So many overwhelming things.
We had her seen at Eggleston's Children's Hospital in Atlanta
by a neurologist and after two MRI's and complete x-rays, everything
looked fine. No explanation. She has been in OT since we brought
her home and we have noticed a huge improvement. In Sept. I read
something on the web about AMC in relation to another gastroschisis
child, but my doctor had never heard of it. Now the more reading
and talking to people that know about this, I am convinced this
is what is going on with our 2 year old. Now I need a doctor!
Do you know of any in the Atlanta or even Birmingham, AL area?
Would appreciate any help you could give with this. I have been
so worried that she had something wrong that would progress before
we could find a way to help. But she has made steady improvement
with the OT.
and Barbara Parham
7428 Spring Villa Cir
Orlando, FL 32819
A few weeks ago someone had given us information on the clinic
that is in Seattle. We are in Florida, so it is quite far, but
we really were curious about it. In looking into it further we
decided we REALLY wanted to take our daughter Brady. For those
of you that don't know about it, it is an Arthrogryposis clinic
that happens 4 times a year. In a nutshell it gives you the opportunity
to meet with professionals that specialize in AMC. It is a world
renowned clinic that is known for their involvement in AMC, they
have seen thousands of cases.
Once we found out that we could meet with all of these specialists
the same day, in the same place, we were eager to go. We called
and the June 30th clinic was full. We were really disappointed
because Brady is scheduled for foot surgery in a month and we
really wanted a second opinion before then. We begged to be seen
but there was nothing they could do; we asked to be put on a waiting
list but they said they never have cancellations..... We hung
up the phone and prayed. On the 24th, two days later we decided
to call back. THEY HAD A CANCELLATION!! Praise God!! The next
days, getting ready to leave town, are a blur.
We dropped everything and booked a flight. (yes, a flight without
7 days advance notice....ouch...). We were on our way. We would
like to hear other peoples stories that have attended this clinic,
is there anyone on the list that has a story too? Most of the
people that were at this particular clinic seemed to be from the
The people that organize the clinic arrange accommodations for
you there. There is a place called "Children's Village"
that you and your family can stay in for $12 a night. Which we
thought was really inexpensive and would be great. We were under
the impression that it was kinda like a hotel.....hmmm, it was
a little different. It was more like a sorority house, but you
can't beat the price. If you are staying for 3 days or so it is
definitely worth it, but if you are only staying one night, you
would be better off in a hotel. You have to do all of your laundry/bedding
(2 hours alone!!) and clean before you leave, which is quite time
consuming, especially if you are only staying one night. I am
passing this information on so no one else would be surprised
like we were. Did anyone else ever stay there? What did you know
about it before you went?
Anyway on to the actual clinic. Our overall opinion of the clinic
was if you have the means to go, absolutely go. We really feel
it was worth our time and money and we highly recommend it. If
you call 206-526-2180 and ask for Karen Peterson (she is in charge
of the clinics) she will send you an informative packet that covers
everything about the clinic. You have the option to meet with
as many professionals that would be beneficial. Your choices are
Physiatrist, Rehab Nurse, Genetics Physician, Orthopedic Physician
(upper and /or lower extremities) , OT, PT, Speech, Dietitian,
and Education Specialist.
Our first appointments of the day were with the OT and PT. They
went over the treatment that Brady was currently receiving and
taught us some additional therapies to do with her. We also had
new splints made for her. They used a different type of material
there. Little things like this will help our local OT with future
splinting. Overall the opinions of both of these therapists was
that Brady was coming along wonderfully and they believe that
she is currently receiving the best treatment. ......result: peace
of mind for mom and dad.
Next we attended a mini-luncheon that most of the clinic attendee
families went to. We had the opportunity to meet several other
families and had a great time.
After that we were taken to a room and from that point on, all
of the rest of the appointments came to us!!! (Can you imagine
all of the doctors being in the same place and coming in to see
you one after the other? Here in Orlando we would have had to
run all over town to see the number of people we saw in only a
few hours!!! And that's if, which is highly unlikely, we could
get appointments with all of them in one day!) The nurse came
in next and went over our questions and concerns. She also made
sure that everything was going as we had expected.
Then came the upper extremities Ortho. (We were a little scared
to see him after a mother at the luncheon had given us a not so
nice report on him) Thank God, he was wonderful. He agreed with
our local doctor that Brady would not need any surgery on her
hands. He was quite impressed with how well her hands were from
splinting. He gave us a few extra suggestions and was on his way..........
Result: More piece of mind for mom and dad.
Here's where our day got really interesting. The Geneticist
came in next. She really knows her stuff. She has personally seen
hundreds of AMC cases. She is even one of the editors on the "Arthrogryposis:
A Text Atlas" book that we have all been talking about lately.
Her main job is to identify the exact classification of AMC. We
were really looking forward to this appointment as Brady was never
"conclusively" diagnosed. All of our Orlando doctors
go back and forth between Distal AMC and Amyoplasia. This Geneticist
says without a doubt, Amyoplasia after seeing Brady's newborn
pictures. We were so excited about what she told us next, I want
to ask the members of the list if this rings true. She said when
dealing with Amyoplasia, the odds of us having another child affected
by AMC is VERY rare, almost like winning the lotto twice. And
that it has NEVER happened that a person with Amyoplasia has passed
it on to their children. Is this true??
Is there anyone out there that was diagnosed with Amyoplasia
that passed it on to their off-spring? She said that in cases
of Distal AMC their is a 50% chance to pass it on.
Our final appointment of the day was with the lower extremities
Ortho., which was really important for us as well. Brady is scheduled
for a heel cord release in 5 weeks and we really wanted to get
a second opinion on the type of procedure, post op, timing/age,
etc. We were pleased to learn that he felt that we were right
on schedule with everything. The only thing that he disagreed
about was her hip. He believes that multiple surgeries should
be done at the same time. He would put Brady's hip back in the
socket at the same time he did the heel cord release. This makes
sense since there would be less down time overall. However, our
local doctor prefers to do the surgeries separate. We have discussed
this and feel at peace with our local doctor and are getting the
surgeries back to back instead of on the exact same day. Any questions
or comments on multiple surgeries vs. individual surgeries?
More than anything we felt this clinic really helped reassure
us that we were doing everything right . Until now, we were just
trusting those people that we were sent to locally. When she was
born, everything was a surprise and we were just thrown to professionals
as we knew nothing. Only to find that some of them knew even less
than we did. We are so relieved to know that we are getting the
same treatment locally that we would at a center that specializes
Hope this answers some questions. We tried to answer the questions
that we had before we went. I look forward to hearing any responses
you guys can offer!! The clinic really was wonderful and we met
some great people!! (We even met a family from Orlando!! Can you
believe we both had to go to Seattle to meet when we are only
minutes from each other?!)
206 Montclair Blvd.
Savannah, GA 31419
My son Bryce was diagnosed at birth as having Arthrogryposis.
He is now 11 months of age and we have had a very busy year. He
is having surgery on his feet next week 10-28-99 at Shriners Hospital
for the vertical talus. I have gotten information from the doctors
the Internet Shriners, and of course learned about this disease
from the many people that work with him on a daily basis, but
I ran across your name as having information on this and whatever
you could send me would be of help. It seems like every time we
get one problem fixed it time for him to work on some new challenge,
and I understand that no one knows the reason why this even happens.
He is doing very well, but any info I can get on this to help
him in different way to better his condition would be appreciated.
We are currently working with him on:
From: The Editor
Our daughter, Melissa, passes several significant milestones
in the last 18 months. She bought a car, learned to drive, moved
away to college, and turned 21! The car (a 1989 Grand Prix) needed
only minor modifications for Melissa to drive it. It came with
an power driver’s seat that we mounted on rails to allow
it to go back about six more inches. That way, Melissa can sit
down without having to bend her leg braces. We added a block to
the gas pedal to bring it even with the brake pedal. We also added
a stop on the left side of the brake pedal to keep Melissa’s
foot from sliding off. Melissa uses her left leg on the brake
and right leg on the gas. Melissa is currently attending Sonoma
State University in Rohnert Park, California (near Santa Rosa).
She’s majoring in music (voice and percussion) and is also
taking classes in graphic design. She lives in an apartment off
campus with one roommate and her Canine Companion Ungar (a Golden
One big concern we have at this time is health insurance. When
Melissa turns 22 she is no longer covered under our policy. We’re
searching for a policy that will continue to cover such things
as her braces without being too costly.
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From the Medical Professionals
New Children’s Hospital
P.O. Box 3515
Parramatta NSW 2124
My name is Gregory Hamer and "The Royal Alexandra Hospital
for Children" employs me as an Orthotist in Sydney Australia.
I am after information on Orthotic treatment for children with
I currently see a young lad who is now 13 years old. This lad
has Arthrogryposis that affects his legs and hands. He is an active
boy and does a lot of swimming and walking. The problem is that
he has a fixed Plantaflexion of 60 deg. on both feet and flexion
contracture of 45 deg. on both legs and a small degree of hip
He is currently wearing a pair of KAFO’s with Otto Bock
drop lock knee joints and 20mm side steels. They are attached
to a pair of Surgical Boots with an 8mm round ferrule. The KAFO’s
have been made with 15 deg. of flexion at the knee to help accommodate
his knee flexion. A leather kneepad lined with lambswool is also
The problem with all this is that he is only a small build and
this is too heavy for him to use for extended periods. Making
the KAFO’s from lighter material results in bending of the
Have you had experience with treating clients with this degree
of flexion deformity? Do you have any suggestions on Orthotic
materials that are lightweight and strong that a KAFO with knee
joints could be made from?
I would appreciate any comments and suggestions on further treatment
and ideas for this lad.
I am a physical therapist currently working with a 2 1/2 year
old child with arthrogryposis. This little guy has no upper extremity
movement, other than some flexion in the second digit of the right
hand, and ulnar deviation of both wrists. We would like to begin
toilet training, and some dressing skill instruction. Does anyone
have ideas as to how we could most successfully introduce these
skills? I would greatly appreciate any ideas or suggestions you
may have. Thank you.
Hope Children’s Hospital
Oak Lawn, IL 60453
Please place me on your list of interested therapists. I work
at Hope Children's Hospital, Oak Lawn, IL . I did find great resource
people from your Interested Therapist list.
389 Half Hollow Rd.
Dix Hills, NY 11746
I am an Occupational Therapist currently working with a 5 year
old little boy with Arthrogryposis. I am very interested in information
for school and/or play modifications, activities, games, etc.
Also, since he is attending kindergarten, I’m looking for
writing modifications. I would greatly appreciate any and all
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We wish to express our thanks to the family of Joseph Shapiro,
who left a generous bequest to Avenues in his estate.
AMC Chats on the Internet
Just a reminder to everyone, we now hold chats twice a week.
You're welcome to join us on Tuesday evenings beginning at 6:30
PM Central Time (7:30 EST). Host for the Tuesday night chats is
Tracy and we're still looking for input on building a major foundation
or support network for Arthrogryposis. You're ideas and help are
much needed. Chat page: http://members.aol.com/amcchat/chat.html.
Hope to chat with you soon.
Eating Aids Designed for Persons with Arthrogryposis
My name is Nate Pease. I am writing you because I found
your name on the Internet. It gave a list of NORD locations interested
in AMC so I wanted to contact you about an exciting new product
that helps people with AMC and a wide range of other conditions.
I have a son, Jordan, who has AMC. He is eleven and is the Greatest.
The product is: Adapt-Able eating utensils that you can configure
to make up the lack of range of motion a person has. We designed
this utensil for Jordan, but found that it will help so many others.
I have provided a flyer to show you a little how they work. If
you have questions or need to get more information, please don't
hesitate to call. Thank you for the wonderful work you do in helping
people have a more full and independent life.