A Little about Little Fins

In March 2003, our daughter Lila was born missing her right hand.  The doctors defined the occurence as a "vascular event - a failure of formation".  Over time we found other families in the Twin Cities area that had experienced the same event in their lives, and like us, were searching for others to share with.  Within a few months, we had located and added to our group close to a dozen families, and the list continues to grow.

As our group grew, we decided a name that was fitting to our situation was appropriate, and went with "Little Fins", after the Disney movie, "Finding Nemo" where the main character, Nemo, a young clown fish who goes on an awsome adventure, was born with a "little fin".  An inspiring movie to all, it is especially meaningful to our family members who have "little fins" and tells an important story that nothing is impossible.

Sonja & Jerry from Lino Lakes also have a son with a upper limb difference.  Together, Sonja & I have worked to organize events for the Little Fins families.  We welcome questions & comments, or new families wishing to join our group.  Please feel free to .

Welcome! 

Elizabeth & Tom

Children Lila & Madelyn & Nicholas

Jerry & Sonja

Children Gerry & Madeline

SEEKING STORIES

All of our families share a story in common - the story about how they came to be a "Little Fin" family.  Would you like to share your family's story?  It can be from the viewpoint of a mom, dad, brother, sister,grandparent, Little Fin child or whoever considers themselves a member of the family.  Your story would be posted to the website below, exactly as you have told it, for all to share and enjoy.  Simply send us an email at littlefins@littlefins.org we will be happy to help out with any questions you have.

Little Fins Family Story's

Many of our families have shared similar experiences, and at the same time, are often wondering if there are other families and children who have gone through what they are going through.  In order to provide a forum for discussion and consideration, we have posted some of our family stories below.

Amber's Story

When Cal and I learned during a routine ultrasound at 19 weeks gestation that our daughter would be born without a right hand, we had a moment of sadness followed by feelings of optimism.  As a Physical Therapist I knew that children with congenital, below the elbow limb deficiencies function very well in life.  We were thankful to know about her limb deficiency in advance, because it allowed us time to talk with people, to do a lot of research, and to be mentally and emotionally prepared before her birth.  When Amber was born, we were able to focus on our healthy, beautiful baby girl.  It mattered not to us that she was missing her right hand and 2/3 of her forearm.

Amber's first appointment at Shriners Childrens Hospital was at 3 months of age.  A couple months later she was fitted for a passive prosthesis.  She received the passive prosthesis at 6 months of age and learned to use it to assist her left hand when picking up large objects, to help her balance when sitting, and to crawl.  The passive prosthesis worked very well for gross motor activities.  As she grew older, though, she began to engage in fine motor activities, and it became apparent to us that she was frustrated at not being able to pick things up with her passive prosthesis.  From the point of view of brain development, we thought that, as she learned to pick up small objects with her left hand, she should at the same time be learning to pick up objects with her prosthetic hand.  We believed that she would benefit from a prosthesis that would allow her to use a terminal device that opens and closes.  We hoped to have her fitted with a functional prosthesis by age twelve months.

Next we needed to decide if Amber should be fitted with a myoelectric or with a body powered prosthesis.  We were told by many people that children tend to learn very easily and at an early age how to use a myoelectric prosthesis.  In contrast, prosthetists, doctors, therapists, and other professionals, as well as parents of limb deficient children with whom we spoke, concurred that children do not usually master the use of a body powered prosthesis until 2-1/2 or 3 years of age.  We believed that, if we waited until Amber was 2 or 3 years old for her to be functional with a body powered prosthesis, she would lose many months/years of actually using her prosthetic hand functionally for fine motor activities.  A myoelectric prosthesis became our prosthesis of choice, because we believed it would give Amber the opportunity to use her left hand and her prosthetic hand equally for bimanual activities during these formative months when her brain is quickly learning and developing connections with her body and with the environment.

We talked with Shriners about fitting Amber with a myoelectric prosthesis at 12 months of age.  They said they could probably do that, but seemed a bit reluctant.  Although children are fitted with myoelectric prostheses at as early an age as 9 months in other parts of the country, in the Twin Cities area the earliest they are fitted is at 18 months of age, and usually not that young.  We felt that we were pushing Shriners into something they were not completely comfortable with, and we also did not want to feel that we were "taking more than our share," as Shriners is a free system, and a myoelectric prosthesis is expensive.  We were very happy with the care Amber had received at Shriners and did not want to leave the Shriner system, but we could not change how strongly we felt that fitting Amber at a young age with a myoelectric was what would be best for her.  As a compromise, we decided to pursue a myoelectric prosthesis through Hanger Orthotics and Prosthetics  www.hanger.com while, at the same time, continuing to take Amber to Shriners for doctor appointments, therapy, and passive prosthetic care.

The process of pre authorization from our insurance company took some time.  Hanger Orthotics and Prosthetics put together a wonderful packet of information that included letters of medical necessity from two doctors and an Occupational Therapist.  It also contained a parent letter from us and a detailed letter from Hanger, outlining why a myoelectric prosthesis would be beneficial for Amber.  Upon its submission, the insurance company denied the request for pre authorization.  We were told that the request had been denied because we were asking for a myoelectric with proportional control (variable grip speed).  We resubmitted a request for a "standard myoelectric" without proportional control.  The insurance company then called Hanger to say that they did not have a problem with the proportional control, but that the micro processing unit of the prosthesis was being denied.  When Hanger explained that the micro processing chip is the "brain" of the prosthesis and that the prosthesis will not work without the micro processing unit, the insurance company reversed its earlier decision and approved our original request for a myoelectric with proportional control.  We were elated!

Next we waited for the pediatric upper extremity specialist from Hanger to fly in to cast and create a test socket for Amber.  The prosthesis was fabricated over the next month.  She finally received her myoelectric at the age of 15 months, about 3 months later than we had hoped.

The myoelectric prosthesis slips on over Amber's limb and is a very intimate fit.  There are three electrodes in the socket of the prosthesis.  Those electrodes push against the skin on her limb over her wrist extensor muscles.  She does not have a wrist, of course, but she has part of the wrist extensor muscles that would have extended to her hand if her lower forearm and hand had developed.  When Amber contracts her wrist extensor muscles, the electrodes pick up the electrical impulse and send a message to a motor in the myoelectric hand that tells the hand to open.  When she relaxes the wrist extensor muscles, the hand closes.

Besides age and cost, the other argument against fitting a child under 18 months of age is that a myoelectric prosthesis would be too heavy for a such young child.  At 10 months of age, Amber began to wear a weighted wrist band (custom made by a friend) on her passive prosthesis to prepare her for the increased weight of the myoelectric prosthesis.  At regular intervals we added to 1 ounce of weight to the wrist band, until she was tolerating half a pound of weight on her limb (passive prosthesis plus the weighted wrist band).  As it turned out, that was not necessary, because Hanger decided to try a very small, lightweight lithium polymer battery in Ambers myoelectric.  The battery they used was the type that people who are very serious about flying remote control airplanes use in their airplanes.  Amber is the first child to have a myoelectric with this type of battery (I believe an adult myoelectric wearer is also trying the battery).  Because the battery is so light, Ambers myoelectric is only slightly heavier than the passive prosthesis she wore.  The small size of the battery allows the forearm of the myoelectric prosthesis to look proportional to the forearm on her sound side.  In the past, because the battery took up so much space, young childrens myoelectric prostheses either had a large bump on the forearm to house the battery, or the entire forearm was very bulky looking.  Hanger did a great job of developing an aesthetically pleasing myoelectric prosthesis.

Amber has now had her myoelectric prosthesis for 1 month. She has accepted wearing it and has shown no signs of rejection.  She is beginning to understand that she can carry objects with her myoelectroc hand.  When we place a film container or a small bucket handle in her prosthetic hand, she fills the containers with Cheerios or toys using her natural hand.  We also place in her prosthetic hand a small "fishing rod" that has a magnet on the end so that she can "fish" from a puzzle that has magnets on it.

As Amber plays, the myoelectric hand opens and closes because she is automatically contracting her wrist extensor muscles.  She has yet to figure out that, if she contracts those muscles voluntarily, the hand will open at her will.  She generally ignores the hand as it opens/closes as she is busy playing.  The only time she really takes notice is if the hand opens and then closes on the skin of her leg, abdomen, etc., in which case she cries, because the pinch force of the fingers is uncomfortable.  (Luckily, there is a "Mommy switch" on the side of her prosthesis, so that we are able to open the prosthetic hand when she pinches something she shouldn't.)  We are told that these young children just suddenly figure out on their own one day how to voluntarily open/close the myoelectric hand.  We are excited for the day that Amber "gets it."

A prosthesis is just a tool, and,in the end, it does not matter to us whether or not Amber wears a prosthesis when she is older.  However, our goal is to provide her with the opportunity to learn to use a prosthesis well, so that she will be able to function in life with a prosthesis if she so chooses.

-- Jennifer, Mother of Amber

                September 2005

Amber's Update, October 2006

After 4 months of Amber's myoelectric prosthesis responding inconsistently, we sent the myo back to LTI for testing.  LTI fixed a couple of items including a pinched wire.  In January 2006, three days after Amber received the fixed myo from LTI, Amber "got it" -- she was able to voluntarily open and close the myo.  She is now almost 2 1/2 years old and is able to use her myo for activities such as opening/closing a zippered purse or "One Zip" plastic bag; holding a bag open with her myo so that she can reach into the bag with her sound hand to place/remove objects from the bag; carrying two small objects, one in each hand; holding a retractable measuring tape with her myo so that she can pull the tape with her sound hand; holding both handles of a tricycle, stroller or toy shopping cart; swinging while holding onto both ropes of the swing; playing cymbals or clicking music sticks together etc.  We are very pleased with how the myo functions as an assitive tool for Amber to participate in two-handed activities with both her right and left upper extremities.