Personal
Accounts: Parents of Affected Children
Introduction
| Isabella | Ezekiel
|Lori | Lindsay | Jordan
| Ian
Introduction
Parents and grandparents are greatly affected by having a child with
an amputation. Parents tend to worry about their children. It is not
easy to be the caregiver of a little child with an amputation. By seeing
how parents and grandparents feel, it is easier to understand how members
of a amputee's family feel.
Back to top
Grandmother
of Isabella
Tamara’s granddaughter, Isabella
has Amniotic Band Syndrome and is missing parts of her fingers. She
has had two surgeries even though she is only nine months old. Due to
the surgeries and to the casts she has been forced to wear, Isabella
is slightly developmentally delayed. She has trouble crawling, for example,
while wearing a cast. For Tamara, the hardest part about having a granddaughter
with Amniotic Band Syndrome is the worrying. Tamara worries whenever
Isabella has surgery. She also worries about the recovery. As the parent
to the mother of Isabella, she is concerned about her daughter being
too over-protective of Isabella. She doesn’t want Isabella to
be too sheltered. Isabella’s challenge is figuring out how to
use her hands and feet. She’s still so young. Tamara would change
Isabella if she could, not for cosmetic reasons, but because she worries
so much about how her own daughter is affected. Tamara would also be
happier if Isabella did not have to endure surgeries. Having a granddaughter
with Amniotic Band Syndrome has changed Tamara’s life. She’s
learned to appreciate humankind in a new way. Tamara’s grandmotherly
perspective shows a different side of Amniotic Band Syndrome…the
side of those who love someone affected.
Back to top
Mother
of 2 1/2 year old Ezekiel
On Friday, September 20th, 2006, a two and a half year old boy name
Ezekiel became a part of Heather's life. Ezekiel, or Zeke, is missing
the fingers on his right hand. His right palm is also smaller than what
is considered to be normal. Zeke was born in China and had been living
in an orphanage since he was born. It is believed that Ezekiel was born
in rural China. His parents left him outside of a hospital entrance
because they felt that he could not farm and perform daily chores as
well as a child with two hands. As a parent, Heather’s biggest
challenge is to treat him as she treats her other children. He will
be expected to collect eggs and help with the goats, for example. Currently,
Zeke’s biggest challenge is to forget his days in the orphanage.
Ezekiel needs to learn to be loved, love others, and most importantly,
to be himself. This situation has affected everyone’s life. Heather
has become more aware of the number of people affected by Amniotic Band
Syndrome and has this has helped her become more compassionate. Heather
was able to adopt Ezekiel and make him a part of the family for the
simple reason that Ezekiel was born with Amniotic Band Syndrome and
therefore, was not particularly likely to find an adoptive family.
Back to top
Lori,
Mother of a Daughter with ABS
Lori’s daughter was born with amniotic bands around her calves
and two toes. She was also born with two short fingers on the left hand
and four short fingers on the right hand. Some of Lori’s daughter’s
fingers are still being separated. The hardest part about having a daughter
with Amniotic Band Syndrome is that she worries about her daughter for
various reasons. First, Lori is concerned about how her daughter will
deal with her situation emotionally. Next, Lori worries about her daughter's
operations. It hurts her to see her daughter in surgery. Finally, Lori
doesn’t like to see other children ask her about her daughter's
hands. Other children have said nasty things about her hands. This causes
the little girl to hide her hands more frequently. For her daughter’s
sake, Lori wishes her child’s hands were normal. Still, Lori loves
her daughter’s hand and would never change them. Lori hopes to
help her daughter become a confident girl who will love and accept herself
the way that she is.
Back to top
Mother
of 4 1/2 year old Lindsay
Lindsay, daughter of Megan, was born as an amputee. She is missing her
right arm below the elbow. Some people have told Megan that her daughter
was born with Amniotic Band Syndrome; others have said it might have
been a “vascular incident.” For Megan, the hardest part
about her daughter being an amputee is wondering whether or not Lindsay
will become a confident teenager. Lindsay is learning to perform small
tasks on her own. For instance, she has trouble doing buttons, snaps,
zippers, putting on socks, ballet slippers, and opening cheese sticks.
In order to make Lindsay’s life easier, Lindsay has a myoelectric
prosthesis. Megan wonders if it actually helps make tasks easier
for Lindsay. Lindsay isn’t very interested in using the prosthetic.
She likes her prosthetic and will use it when asked to, but for the
most part, Lindsay will take it off after a few minutes. Her family
willing to accept whatever decision she makes as she gets older. Having
a daughter with one hand has greatly affected Megan. She has met many
people through an “ABS Support Group,” and “Shriner’s
Hospital,” that she wouldn’t have otherwise known. She doesn’t
ask, “Why me?” Instead, Megan celebrates the fact that she
has a beautiful girl. Lindsay's disability has influenced where the
family lives and works. Megan’s husband has a job in the Foreign
Service. If the correct type of occupational therapy is not available
in a certain location, the family will move. Lindsay has a tendency
to stand out and get more attention then other children, but she doesn’t
mind the attention and is a confident little girl. Megan loves her daughter’s
“little arm” and the way that Lindsay uses it. It’s
what makes Lindsay unique. In Megan’s words, “I do love
her little arm as much as I love her awesome personality, her curious
mind, and her constantly complimented bob haircut. What can I say…Lindsay
is my pride and joy.”
Back to top
Mother
of 9 year old Jordan
Nine years ago, Sandy Carter had a baby boy and named him Jordan. Jordan
was born with only one toe on his right foot and no toes on his left
foot. On Jordan's right hand, his middle and ring finger were fused
together. These fingers don’t have any nails or nail beds. On
Jordan’s left hand, his thumb, index finger, middle finger, and
pinky are all not fully formed. Jordan doesn’t have a ring finger,
either. None of these fingers have nails or nail beds. This hand was
also formed in a ball. In order to separate the two fingers on Jordan’s
right hand and open up his left hand, Jordan was required to have surgery.
This happened when he was six weeks old. The longest and most difficult
operation transplanted one of Jordan’s toes to his ring finger
on his left hand. Another operation took bone from Jordan’s elbow
and put the bone into his “ring finger” to help with mobility.
This was not entirely successful, so more operations will be needed.
Lastly, Jordan has had skin grafts taken from his inner thigh and groin
area to his hand in order to help the hand’s span. Jordan’s
says that his biggest challenge is to move his hand. For Sandy, on the
other hand, the hardest part of this ordeal was spending a large amount
of time in the hospital and wondering if Jordan would be all right.
Today, however, the most difficult part is seeing her son's feelings
hurt when others make comments. Sandy’s biggest challenge is to
help Jordan with self-worth and confidence. She doesn’t want her
son to feel sorry for himself or become a quitter. Jordan feels that
having Amniotic Band Syndrome makes him feel different than other people
and left out. Sandy realizes if Jordan did not have Amniotic Band Syndrome,
both of their lives would be different. Neither would be as strong or
compassionate, so Amniotic Band Syndrome has had a positive impact on
both Jordan and Sandy. If given the opportunity, Jordan would not change
anything about himself. He has had to deal with many hardships, but
still he keeps on going.
Back to top
Mother
of 8 1/2 year old Ian
Kerry Corkey gave birth to a beautiful baby boy named Ian on
January 12, 2006. His right arm ends approximately two inches below
his elbow due to either a vascular incident
or vascular termination. At the end of this arm, Ian has five nubbins.
Kerry feels guilty because she thinks that her body did this to her
son, even though she knows that this is not the truth. It’s challenging
for Kerry to deal with the reactions of others. Some people are rude
and ignorant, and that hurts Kerry. Amniotic Band Syndrome has taught
Kerry how strong she really is. She realizes that the situation could
be worse. During her pregnancy, Kerry knew that Ian was going to be
an amputee. Everyone, including friends and family, learned to accept
this. On October 27th, Ian got his first prosthetic. His parents felt
as though it was their responsibility to give Ian the tools they could.
When Ian gets a little bit older, he will be able to decide whether
or not he wishes to continue using prosthetics. Ian deserves the opportunity
to try everything out.
Back
to top
