ican's Family Newsletter
Message from the President
ican is an acronym for the international children's anophthalmia network. More importantly it is an acronym for people, families, professionals and friends, who care about children with unilateral (one side affected) or bilateral (both sides affected) anophthalmia/microphthalmia. While each child and family has individualized needs and experiences, ican is committed to helping you share your experiences and ideas with others and to help everyone learn more about anophthalmia/microphthalmia.
In that regard we will continue to attempt to provide an appropriate mix of topics, articles and real life experiences that we hope will prove to be both enlightnening and informational. For example; we beleive the enclosed article, Preparing your Child for Surgery, by Denise Houston, will serve to enlighten those parents who may be planning for their child's first surgery by providing an experienced parent's concern, fears and expectations.
A second article. Just a Car With One Headlight, by Henry S. Fine provisdes us with the perspective of a unilateral adult who has learned to live with his challenge and become a suddessful business person. The article entitled, "Its the Kids that Matter" highlights Dr. Willian R. Nunery, an ophthalmologist who confirms that anophthalmia/microphthalmia is more of less a medical emergency which needs immediate attention. We believe Dr. Nunery's concern is especially critical for those families with limited access to medical expertise. Finally, the article, "Outreach...And You" by Sandy Finkle helps to explain the benefits of blind school outreach programs.
In addition, it is important to note that for those families who are able to travel to the Philadelphia area, we have scheduled ican's Second Annual Family Picnic for Saturday, September 16, 1995 at Ridley Creek State Park. Last year's picnic privided for a great time for everyone to gather and make friends so we are confident this year's event will be a succuss as well...
For our many new members, The Conformer is the official newsletter of ican and will be published on a periodic basis. Parents, friends and professionals are encouraged to submit articles or ideas for articles similar to those I have discribed in this issue to Jim Nugent, Corresponding Secretary at 194 Juniper Lane Exton, PA 19341. For the next issue, we also have plans for a new addition, the Question and Answer Column. We hope, through this column, to provide answers to some of the questions asked most often by parents and friends of children with unilateral and bilateral anophthalmia/microphthalmia. Dr. Adele Schneider, Geneticist and Director of the Anophthalmia/Microphthalmia Registry will be assisting ican in gathering responses from Ophthalmologists and other experts from around the world. Questions and ideas for this column can also be sent to Jim Nugent, and we hope to provide responses in a timely fashion.
On behalf of the Executive Committee of ican, thank you again for your interest and support. Have a safe and happy summer!
The headline is a quote from Dr. William R. Nuner, an ophthalmologist with the Midwest Eye Institute of Indiana University. The quote was reprinted from a larger article; "Giving Back" which highlighted Dr. Nunery's accomplishments and which was published in The Bulletin of the Indianapolis Medical Society. The author, Jackie Freers Stahl, Director of Communications for the Indianapolis Medical Society, graciously apprived our synopsis of her arerticle. We believe Dr. Nunery's message is an imprtant one for parents of mewborns born with anophthalmia. ican is also proud to report that Dr. Nunery is a supporter of ican's activities.
Dr. William R. Nunery has done extensive research in the area of children born without eyes (anophthalmic) and has mastered the gauging expandable implant will yield the child the best result as an adult.
There is a special concern with children being fitted with expanding implants so that the eye socket can develop volume and so they may wear an adult prosthesis as they mature. Dr. Nunery has been involved with this type of procedure for the past 15 years. He receives calls regarding his work from across the United States and Hawaii.
"This is more than a cosmetic issue," Dr. Nunery says. "If a child is anophthalmic, the face does not grow and often becomes misshapen if not treated early. By expanding the eye sockets," he continued, " we attempt to get normal growth of the facial structures. Being born without eyes is usually due to developmental anomalies before birth."
"We also get cases where medical problems have caused the removal of an eye due to tumors, infections etc. The younger we can get these children, the better. If we see the child in infancy, we can use progressive conformers like artifical eyes or large contact lenses. We put these into the eye cavity, called the orbit, to begin the development of the bones surrounding the mid-face. We usually do two or three surgeries on the child, increasing the size of the implant with each surgery."
"For years, physicians mistakenly believed the ycould let this problem go and correct it in adulthood. We have found that it is very hard to fix if nothing is done until the child is grown," Dr. Nunery said.
"Plastic and reconstuctive surgery of the face is really a team effort between us and the ocularists. They work on the eyelid expansion with the conformers before we get involved in the surgery." Dr. Nunery added.
Dr. Nunery lectures on this procedure and wil publis the results of his research in the next year of so. "It takes several years to achieve final results," Dr. Nunery concluded.
Outreach... and You!
by Sandy Finkel, Overbrook School for the Blind Outreach
The term outreach can mean different things to different people. It could mean who you can call in your phone circle or an ability one has because they have long arms...but for Overbrook School for the Blind and many other schools for the blind in the United States it means the extending of services beyond usual limits. There are many more children who are visually impaired in the public school system than there used to be. This means that the itinerant teachers for the visually impaired have increased caseloads. Thus their time is usually spent trying to help the student in their academic achievements, leaving little time to devote to other important aspects of a child's life. This is where a school for the blind can help. Many outreach programs offer short term evaluations, parent, student or teacher weekends, inservices, access to information about blindness, access to a variety of technology and specific skill (orientation and mobility, daily living skills etc...) instructions. If you are interested in expanding your knowledge or meeting other people who have the same interests as you, then you should contact the closest school for the blind and talk to the people on the Outreach department. The Outreach programs are there for you!
Just A Car With One
by Henry S. Fine (Unilateral Microphthalmia)
The man on the cover of TIME magazine was smiling broadly. The dirt of war lined his fave and covered his helmet but the exubenaqnce of victory was in his one gleaming eye. A dark eye-patch with strings circling his head covered the space where his eye had been lost in an earlier war. The man on the cover was Moshe Dayan, the military leader of Israel in the "Six Day War."
My mother handed me that copy of TIME in June 1967 when I was nine years old. It was a watershed moment for me and her words ring in my head to this day. With love and determination in her voice, she said, "Henry, Moshe Dayan has only one eye just like you. If he can lead a small nation to victory against overwhelming odds, you can also do anything you want to do."
Anything that I want to achieve, I can achieve. Being born with one eye missing (actually microphthalmia) is not limiting but in a way it is "empowering" (to use the trendy business term of the 90's). It sensitizes where sensitivity might have been absent, it enables individuality where conformity may have been the rule, and it provides a framwork for a perspective on life's ups and downs that might not have otherwise existed. What I have achieved or failed in life has very little to do with the number of cameras in my head or how deformed the orbit looks.
My parents raised me according to a central theme that my mother eloquently taught me that day in 1967. My successes and failures are my own. I, indeed, was no different than anyone...my sisters, my friends, my schoolmates. Today, I can see that my life consists of the same challenges and opportunities that all married 36-year-old fathers face. If my parents had raised me differently, I shutter to think of the type of person I would have become.
On occasion, my life with one eye has deviated from the norm. There were the times when my sisters and I were late for school and my father was late for work because we were all on our knees looking under furniture for my lost artificial eye. (Once it turned up in the dishwasher although to this day no one, including me, has any idea how it got there.) Then there was the time when a rude person in a grocery line stared at my eye for what seemed like an eternity. I politely offered to take it out for a closer look.
Once, when I was a small child, I took my eye out at the dinner table. My father, recognizing this as a major faux-pas, told me to put it back in but I protested. My mother's response became an all-time favorite. "Henry," she said, "grandfather doesn't take his teeth out at the tabe, daddy doesn't take his pants off at the table, and you do not take your eye out at the table." My eye never came out at the table again.
My father told me long after I became an adult that they sometimes speculated about how I might adjust to the changing role and situations that I would face in life. For instance, how would I handle sharing a dorm room with a new roommate in college (I take my eye out every night)? Would I feel comfortable asking a girl out on a date? Would I feel unattractive? Would a woman that I might fall in love with reject me because of my eye? Would I marry?
The concern, although appreciated now, was not evident then. I never worried about those situations. When I got to college, I took out my eye and went to bed and let my roommates figure it out, answering their questions openlu and honestly. I dated confidently and I can only remember two girls rudley turning me down (in retro spect, I don't think they were happy kids.) I have been happily married for ten years to a beautiful woman, inside and out, who has given me two beautiful children ages 7 and 4.
My wife doesn't enjoy watching me put my eye in or take it out, but the kids seem to handle it just fine. I have never hidden it from them and I answer their occasional questions as openly and honestly as I can.
Sometimes, my self-image does take a hit. When that happens, I often think of a story I wrote in elementary school. The teacher had instructed us to write a story about ourselves using an inanimate object as a substitute. I wrote of the "car with one headlight" who traveled roads just like all of the other cars and, except for this insignificant manufacturer's defect, was indistinguishable from all of the other cars. That happy, little car just plugs right along, as well as the other cars, and has plenty of light to drive at night, I smile and plug right along.
I am a third generation life insurance agent who, like all life insurance agents, put their self-esteem on the line every day. Occasionally, while reviewing insurance needs with a new client in close proximity, I find them stealing a look at the eye that doesn't move. I find it helpful to stop and explain so I can get the issue off the table and get back to the important subject at hand.
I once told that to my mother, and she said with a tear in her eye, "I guess you listend to me when I gave you that magazine." I did.
Preparing Your Child For
by Denise Houson (mother of Megan)
A child's upcoming surgery affects the whole family. For most parents, few things cause as much apprehension, but there are things you can do that may help make the experience easier for everyone involved.
Knowing what may happen in the hospital helps you feel more in control and better able to prepare your child. Find out all you can about the hospital's routines and procedures before the day of surgery. Your doctor, hospital admission office or patient representative's office should be able to help you. Parent's of children with similar conditions are often the best support of all. They can share their experiences and tips on how they prepared their child.
Preparing Your Child
Talk about going to the hospital with your child. The words you use will depend upon the age of the child. Children under 6 years of age should be told a few days in advance. Older children should be informed 1 to 2 weeks ahead of time.
Encourage your child to talk and ask questions. Answer questions honestly, being careful to answer only what is asked. It may also be helpful to use descriptive language when explaining things, (i.e.; the alcohol pad will feel cold and the syringe will pinch). If you don't know the answer to a question, find out and let your child know.
Visiting the hospital ahead of time can also help. Find out if your hospital gives tours or has information booklets that you can read. Reading children's books can help too. Your library may have books about the hospital. Even if your child is young, discribing and talking about the pictures can help. A toy medical kit and dolls are sometimes useful so that chidren can show you what he or she thinks will happen to them when they go to the hospital. Remember to bring along a personal item, such as a stuffed animal or blanket, so your child will have a sense of familiarity.
Preparing Other Family Members
Try to include other family members as much as possible in preparing for one child's surgery. Talk to siblings about what to expect, especially it the child look different or will need special treatment. Accept offers of help (cooking, cleaning, etc.) from friends and family members, especially if your child will be admittd to the hospital for an extended period of time.
This list is by no means complete, There is no easy way to cope with many surgeries and a chronic condition. Each family must find its own way to cope. Your experience can also help others.
Remember, you are your child's most important source of support!
The next anophthalmia/microphthalmia Family Evaluation Day is scheduled for Friday, September 15, 1995 at the Albert Einstein Medical Center, 5501 Old York Road, Philadelphia. We will be offering a genetics evaluation of the affected individual by a Clinical Geneticist, Ophthamology exams for all family members by an Ophthalmologist Geneticist and an opportunity to become participants in the Anohthalmia/Microphthalmia Registry and to complete the registry questionaire. You may participate in all or part of this evaluation. If you wish to participate only in the gene study, please contact us and we will help you work out the best way to ship your blood samples to the laboratory.
If you would like more information, please call (215) 456-8722 or write to:
c/o Genetics, Albert Einstein Medical Center
5501 Old York Road,
Philadelphia, PA 19141
Get together with families and friends to share your experiences and learn moore about anophthalmia and microphthalmia
learn more about ican
Hamburgers, Hot Dogs, Chips, Pretzels, and soda compliments of ican sponsors.
Children and Adult activities throughour the day
When: September 16,1995 11:00a.m. to 4:00 p.m.
Where: Ridley State Park-Pavilion #18
Sycamore Mills Road
Media, PA 19063-4398
RSVP: By September 1,1995, call 1-800-580-ican
ican's first edition of The Conformer was deemed a success. It was not only mailed to all of ican's families and friends, but also to a list of professional Ocularists scatted around the world. We consider it a success as the response has been overwhelmingly positive and has helped us to increase our treasury. Thus, the good news is that we have accumulated adequate resources to keep us going and meet the objectives we have set. The expenses of maintaining our toll-free telephone number, publishing and mailing the newsletter and just the incidentals associated with running a support network were draining. However, the donations we have received will ensure we can deliver another year of ican communications.
We are also proud to report that ican is expanding globally, to cities as far away as Kanagawa-Ken, Japan. This is exciting as not only is the numver of family inquiries and contacts increasing, but just as improtantly, the professionals are beginning to see the value of a relationship with ican. Thank you all for your support and please remember, your needs are our needs so don't hesitate to contact us.
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