MY BABY HAS WHAT?
Chapter 1 - Parent's Guide

     Very few people, if any, actually expect to have a baby affected by something that ends in the word syndrome. Other than the basic vague acknowledgment that such things exist, somewhere in this world, the thought never crossed my mind. Certainly not in the form of a real possibility. My kids were not born suffering from anything other than, what I might in retrospect define as, my ineptitude as a parent. Two kids, no problems.

     No one ever approached me about any irregularities. I never heard the word anomaly. My wife was in and out of the hospital in two days. By the time she was a week old my daughter was eating that rice cereal paste like substance that I thought all babies ate. There weren't a lot of discussions about breast feeding, pumping and things along those lines. Neither child entered the world through an abdominal incision. Sure there was a little yelling, some pain, a couple times I actually felt rather queasy and I think it was pretty hard on the wife too, but nothing out of the ordinary. Nothing to this stuff. How naive and very lucky we were.  Soon after, I joined the ranks of the voluntarily ineffective. For the next twenty-four years I went about my life.

     Call it whatever you like - pregnant, with child, ...one in the oven, expecting, etc. - it is one of the most miraculous aspects of human existence. We are capable of creating new life. In most cases this remarkable feat requires little or no specialized training. It usually does not take place in some laboratory (Unless, the lab workers are attracted to one another...) and for the most part we are all equipped with the necessities to accomplish the task. When pregnancy is the desired result, it can be an extremely rewarding experience from placing the order to taking delivery of the ‘package’.

     After the condition of the prospective ‘mom’ becomes public knowledge, the real excitement begins. There is absolutely no shortage of incredibly talented people who can look at a pregnant woman and divine the sex of the child. It is a girl because of this, some just know it is a boy due to that and so forth. I’ve never seen anyone actually dim the lights, roll the bones and call on any spirits (other than the bottled variety...), but they obviously know more than the average person and certainly more than me. Hopes, dreams, plans, baby showers and all those intimate discussions with mom about nursing and other female topics common to an event such as birth. Of course there is the male version of all that excitement.  Plenty of hand shaking and back slapping.  Touchdowns, homeruns and other accomplishments all bragged about in advance. Yes, men do have hopes, dreams and all that other stuff. We just may not always be the best at conveying our feelings. Suffice it to say that prospective moms and dads spend the better part of nine months prior to the birth of their baby, playing the child’s complete life over and over with incredible imagination.  Eventually, the anticipated day arrives and it’s off to the hospital. We’re having a baby!

"...After a very long night, morning came and the Dr. said it was time. It was July 25, 1999 our baby was here. Everything went fine. The Dr. said, "It's a boy!" and set [the baby] on my stomach, no one was saying much of anything and everyone was crying. I looked down at my new baby and all I could see was a hand with no fingers. My emotions went out of whack at that point. The Dr. said, "There are some problems, I need to check on the baby". I didn't know what to think, all I could do was cry...."

“...I was shocked to find that she had bi-lateral clubfeet and her left hand was slightly smaller than the right hand and it had extremely [deformed] digits 2-4. I noticed that she had her eyes open quite a bit for a new born and they were slightly crossed. A pediatrician was called to the delivery room because she didn't appear to be crying. The nurses gave her some oxygen and she pinked up really good and began to cry. But this cry was unlike any cry that I have ever heard, it was a closed mouth cry. At this time I had all I could deal with and I mentally blocked out the strange cry and I accepted it as normal...”

     Answers appear slowly........minor problems turn into anomalies, anomalies group together to become syndromes. The process takes days. With each day comes more information . Slow realization of the situation walks hand in hand with sadness and disappointment.

“...A third shift nurse informed me that she thought my baby's tongue was attached somehow and that is the reason why she couldn't suck. Again, at this time I was physically and mentally exhausted and I didn't even realize that there was a problem with her tongue. I just thought she was too tired after her birth to nurse...”

“...After talking with her pediatrician, who reassured me that he wouldn't keep any secrets from me, I figured out that there was more of a problem than I had suspected. What could it be?...”

     Anguish is indescribable. Tests and theories. The myriad of questions seem to be answered in vague terms using foreign words and phrases. It seems impossible to leave the presence of a doctor without wondering ,...exactly what did that mean ? Imagination and will take over at that precise moment to fill in the blanks, dealing the emotions repeated devastating blows. As the mystery unfolds, words are heard but existence becomes surrealistic.

     In broken English, one doctor explained that the baby's jaw and tongue were quite small. This made it difficult for her to create an effective sucking motion. She was being fed through a tube inserted in her nose and on to the stomach. They would do a few tests and see what could be done. Over the course of those first few days the quest for a diagnosis is paramount. Little else gets center stage attention.

     It would be great if a doctor could take one look at a newborn, check a book and say, “Yep, here it is. Just as I thought.........” Unfortunately, the process takes days and sometimes weeks. There are instances where the diagnosis came later in life and I’m sure there are individuals that are not accurately diagnosed to this day.

“...The next day we saw the ENT [Ear, Nose & Throat] doctor who ..............found that she had no lateral eye movement, and it took three tongue suppressors to even get a look in her mouth. He suspected either the tongue was attached somehow or the nerve supplying the tongue was involved. He explained to us that he suspected she had Moebius Syndrome, a very rare condition where the cranial nerves do not function. He told us that most commonly the person doesn't have lateral eye movement and lacks facial expression.....”

     Eventually the test results arrive. Panic is slowly replaced by reality. Love is a powerful ingredient when accepting the realities of Moebius Syndrome. Resolve to overcome any obstacle would pale without a generous helping of love. “We can work through anything...” Eyes can be fixed, the tube will be out someday, she may have a bit less muscle tone but she will catch up...We can work with that. In my own experience with Moebius Syndrome, as well as the overwhelming majority of accounts I have read......the inability to smile is the crushing blow.

My immediate response was "what you are telling me is that. I will never see my child smile." The doctor tried to comfort me as. I sat there in his office crying, but there was nothing at that moment that could ease my pain, It seemed like the end of the world to me....”

     Welcome to reality.  The 'world' has not followed the script written during the previous nine month celebration.   The script may have to be revised.  This little baby has something called Moebius Syndrome.  More than likely, this is the first time you have heard the words Moebius Syndrome.  As a matter of fact, there are doctors that are unfamiliar with this condition. 

"After she was born, it took me about a week to accept the fact that my daughter had special needs, and probably always would. In the beginning, it felt as if she had died, the little girl I had dreamed of, with pigtails and barbie dolls couldn't gag or even swallow her own secretions, it is a life filled with suctioning, chest PT, hospitalizations and home nursing!"

"...He [doctor] said he had recently done a paper on something called Moebius syndrome and another on Poland syndrome. He wanted to send us to the big hospital where all the specialist were.The first week of ........... life was a whirlwind of doctors. I think we saw every specialist that there is! They started at the top of his head and worked down.
Neurologist said, "I don't think he will ever function at a normal level, this baby doesn't react to anything!"
Opthamologist said, "He is probably blind in the left eye!"
Audiologist said, "Definitely deaf in the left ear!"
Speech and Feeding specialist said, "He needs to be tube fed, and probably won't be able to form words." The list goes on and on,...."

"The first time I heard the word moebius was from the geneticist."

     Anger and guilt.  "Why the hell did this happen to me,.....him,.....her,......us?!?! - The miracle of modern medicine? - Surely they can fix this? - What's the matter with these doctors?....."  The perpetual question machine starts it's engine, and......."What did I do wrong?".....will be a frequent engine knock.  Eventually, the reality perspective will overcome.

"Who knows? I didn't do anything wrong. I was thrilled at age 38 to finally be having the baby I'd wanted all my life. I didn't drink coffee, take drugs or drink alcohol. I exercised, took my vitamins, was sick as a dog for 9 months and had a wonderful little boy - who happens to have Moebius Syndrome. This has brought wonderful people into my life and has made me aware of a world I knew very little about 10 years ago."

"We don't know why this happened. We have been told time and time again that it was nothing that we did! We feel that GOD gave us this special child for a reason that we have yet to completely understand."

"....I really don't feel that this happened to me. It happened to .............. I'd give anything for it to be me instead. I blamed myself at first, but now I know better. I felt terrible, the thought that I did something wrong while I was pregnant, that she'd have to endure for the rest of her life was horrible. Things just happen sometimes....."

     God willing, at some point you and the new member of your family have to go home. Questions like "What's wrong with the baby?", are replaced with questions more along the lines of "How do we handle this?".

".....Fifteen days...."

"10 days in the NICU. Neonatal intensive care unit."

"We both went home after 3 days - he was born C-section."

Some times, maybe the only answer is that some times, things just happen.  Some times, you just have to play the hand you're dealt.  Some times things just don't go the way you think they're supposed to go.  You are on your own with the responsibility of a new life.  More than likely, of all the planned for considerations, Moebius Syndrome was not on the list.  Now what?  Your family must adapt. You have been challenged.

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