Moebius1.org
FAMILY ALBUMS

PICTURE GOES HERE

SULLIVAN
Linda
EMAIL
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QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG?
(MEDICAL & SPIRITUAL ASPECTS)
I know that my mother often wondered what she may have done wrong, what medication she took (although she never took anything more than an aspirin prior to my delivery) that caused my moebius syndrome. My mother was a very strong woman, and very dedicated to me. I certainly hope she realized that she did not DO anything. She did find out that a distant cousin (I can’t remember if it was of hers or mine) was born with club feet but with no other moebius symptoms. He was an adult by then and had no problem at all walking, etc.

My mother never gave up on me. When the doctors told her that I would never sit up, never talk, never walk, etc., and that I probably had a cognitive impairment, she didn’t believe them. She really gave everything to believing and knowing that there was nothing “wrong” with me but that doctors just didn’t take the time, or know enough, about what my birth defects were, to understand.

I was born with what I guess are the classic moebius syndrome symptoms: clubbed feet, no smile, eyes that wouldn’t move from side to side, and I could not breast feed due to the inability to suckle. Anyway, I indeed learned to walk (my parents bought me a doll for Christmas that “walked” and I am convinced I learned from that doll. I was in feet and leg braces for a long time to correct the clubbed feet. The opthamologists kept saying I had tunnel vision, which may in fact be true in a medical sense in that my eyes don’t really move that much, but I can see peripherally as most people can, and my sight, thank goodness, is good enough to drive a car.

I personally, as a 34 year old adult, have long ago stopped asking “why did this happen to me”, as moebius has made me what I am. I was one of the first people with moebius to have THE operation, the muscle and nerve implants to smile by Dr. Ronald Zuker at the Hospital for Sick Children in Toronto. The ability to smile has not changed me really, it is more of a comfortability with who I am. I had all the horrible teasing as a child growing up in school, it hurt, but it also made me stronger. I’ve gone through academics, received a masters degree and have a very good job as a health planner. I have always had a good sense of humour. I do think of myself as different than most people, I am different for I cannot “smile” as most do, but people do accept this, not all, but most.

I would like to look at growing up with moebius as a gift, a gift that has made me unique and different. It is what you do with your gift that makes you what you are. I don’t know what people think of me, I suppose some think I am weird, “something is wrong with her”. I have had strangers say that I am pretty, cute, etc. Kids are hard to reach as they are the ones that pick up the “differences” in other humans, and this is probably why I am not comfortable around kids.

I do believe in a God and I’d like to think that he has given me this gift for reasons beyond what I can see. I have tried to do everything and anything. There is little I can’t do that someone without moebius syndrome can. It is hard when you go into a job interview and explain up front that you do have a disability that prevents you from making facial expressions as normally or as spontaneously as the interviewers.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
See above description.
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
As far as I can gather from what my parents have said, I was in, and out, of the hospital for many months. Probably after birth I was in Sick Kids for at least four months.
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
As noted in question 1, I had surgery on my feet and legs when I was very young, under five years of age. I had some corrective eye patches also, not surgery, probably more because Ihave a stigma. The muscle and nerve implantation did not take place until I was sixteen.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
Although I cannot talk about what a G-Tube is, I surmise this is the tube that babies born with moebius are given to feed through. I may or may not have had a problem swallowing, but I don’t now and I ate regular food at least since I was 2 or 3.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
I did have speech therapy when I was little, but to be honest I can’t really say how much it helped or hindered. Because I cannot put my lips together, I can’t say “P”, “B” nor “M” properly, but you get beyond that (people either know what you are saying or you repeat it to them!). I don’t remember any physical therapy, but I probably did have some when I was under five years old.
7.) DOES YOUR CHILD EVER SMILE?
WE ALL SMILE, EVEN THOSE OF US WHO DON’T SHOW OUR TEETH OR DIMPLES! I’ve had the operation and yes I can “smile” with the new muscles and nerves. I am certainly glad I had the operation, but I think the person having it done needs to be emotionally, spiritually and psychologically comfortable with themselves before. Having muscles and nerves implanted in your face, while also painful, will not “cure” moebius, you cannot smile as others normally do, not to mention you have to think about smiling as this has not been an instinctual part of your life until you’ve been given these new facial implants.

I am sure that all parents with a child who has moebius will agree that there child smiles, laughs and expresses themselves - this is what matters most, not really whether you can actually see the smile.
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
No, sorry, as far as I recall, the only financial burden my parents faced was the costs of travel and maybe glasses.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME?
(DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
You can contact me anytime. My name is Linda Sullivan and my e-mail address is sully@vianet.on.ca. Please e-mail me if you would like to talk to me directly on the phone, or maybe in person depending on where you and/or your child live. I live in Central Ontario, Canada, but I am currently working in Southern Ontario.
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
My parents were probably very worried, very scared and probably frustrated after I was born as few if any doctors had any idea what was “wrong” with me. I was probably diagnosed with everything from spina bifida to mental retardation. They were all wrong. That was 34 years ago though, now more is known about moebius syndrome. I’m sure that the Moebius1 web site and members can tremendously help parents, children and adults with moebius. My family has always been supportive and encouraging. As I said, it is your mind set, it doesn’t matter what you are given in life, it is your mindset that determines who you are. Not being able to smile is not the end of the world.

Right now I have come down with Tinnitus, ringing in the ears. I am scared of it and hope it goes away. I am looking for answers and anyone’s help if they too have Tinnitus, either with or without moebius. If there is a link, I’d like to know about it.