Tuesday, October 25, 2011

January 24, 2008: I Remember You Unfondly

Many of you already know this story but I have decided to write about it anyway.  When NG was originally diagnosed I scoured the Internet trying to make contact with anyone who might have any experience with this condition.  There was nothing!  So I'm going to document our experiences just in case someone else might be searching for information.  Maybe this can give someone else hope that we suffered through several long scary weeks without.

In December 2007 I took NG to have a routine eye exam.  I had noticed her holding books extremely close to her face when she would read, and in church she wasn't able to read the words fast enough to actually sing along.  She had not complained about not being able to see clearly, and based on her grades didn't appear to be having any trouble in school.  Little did I know this would be the beginning of an adventure we all could have happily lived the rest of our lives without experiencing. 

I made an appointment with Dr. Jeff Myers in Springdale.  L and I see him for our eye exams, several of my coworkers see him, and I felt (and still feel) completely comfortable taking NG to him. 

Let me just say that I am extremely particular about the health care professionals my family and I see, and I make no apologies for that.  To my way of thinking I pay them, I pay for the insurance that pays them, and it is my family's and my health at stake so therefore that makes me the boss.  In my opinion doctors don't necessarily have to be sympathetic, but they should be empathetic.  They should be both proud and humble of their success.  They are human not God, we need to remember this as patients and they need to remember this as doctors.  It is not necessary for a doctor to talk to me like I'm stupid, however it is necessary to talk to me in words I will understand.  I already know doctors are smart (after all they are doctors) so there is no need to spend valuable appointment time trying to prove it, and doctors already know my family or myself are in need of medical attention (after all that's why we see doctors) and therefore it isn't necessary to spend valuable appointment time trying to "outsick" the patient in the next room.  Those of you that really know me are aware of just how forceful (yea, that's the word I'm going with) I can be.  I never question my trust and faith in God, but if I question the trust or faith I have in a doctor then God and I are going in search of a new one.  I have fired more than one doctor, and the truth is it's probably going to happen again at some point in time or another.  With that having been said, back to the story.....

They performed a complete eye exam: took pictures of her eyes, checked her peripheral vision, checked her eye pressure, dilated her eyes to check for abnormalities, gave her an eye test, and Dr. Myers spoke with her at length concerning her vision.  At the end of all of this he determined her vision overall was bad, her right eye was significantly worse, she would definitely need glasses, and the pictures gave him some cause for concern.

Even though the non-contact tonometry or "puff of air" test did not indicate problems, because of the pictures, he recommended she be tested for glaucoma.  He went on to say that it was most likely a simple coloboma and these were most generally harmless, but we should rule out glaucoma just to be safe.  He referred us to Dr. Steven Vold, a glaucoma specialist.

We originally had an appointment scheduled for January 3, but due to an insurance issue we had to reschedule for January 24.  I can't remember the exact time but it was an afternoon appointment.  Dr. Myers had already forwarded NG's information and films so Dr. Vold already knew why we were there and what he was looking for.  What he found was completely unexpected, even by him.

It's never a good sign when the the doctor asks if he can finish with his last few patients and then come back to explain everything since it's going to "take some time".  It's an even worse sign when he asks permission for his colleagues to come in and examine your daughters eyes because "this condition is very rare, most of us have only seen it in medical books".

Dr. Vold diagnosed NG with bilateral Morning Glory Disc Anomaly Coloboma aka: Morning Glory Syndrome.  That's basically a really long name for a birth defect where the optic nerve forms incorrectly, and although it was even more rare to have the condition in both eyes NG had just that.  And then came worse news.

Morning Glory Syndrome causes moderate to severe blindness, but with this condition the malformation can allow fluid to seep behind the retina causing it to detach.  This to can cause blindness.  That was exactly what had happened with NG's right eye.  Fluid had seeped behind her retina and detached it at her center vision.  She was legally blind in her right eye and if it wasn't stopped soon she could lose vision in that eye completely.  Full disclosure required Dr. Vold to point out that although this had not happened in her left eye yet, that did not mean it wouldn't.  And then came the worst news.

Did I happen to mention this condition is extremely rare?  And somewhat controversial?  We needed help that Dr. Vold could not provide.  Unfortunately, since the condition is so rare he wasn't sure where to refer us to get help, but we all knew without help NG would lose all sight in her right eye and her left one could be next.  We were desperate to find a doctor who could and would treat her because time was a luxury we didn't have.

Dr. Vold decided to contact the Dean McGee Eye Institute in Oklahoma City, Oklahoma.  They agreed to see her and gave us an appointment for the next week.  The following Tuesday night L, NG, L's sister T, and I made the overnight trip to Oklahoma City for an appointment with the retina specialist.  We were not impressed!  Remember those requirements I have for doctors?  It quickly became apparent we had not found the help we were so desperate for in Oklahoma City.  We returned home with no answers, no encouragement, and no real idea of where to go next.  I can't possible describe what an awful feeling that is.

That Sunday a member of our church recommended we call Dr. James David Bradford, a retina specialist for Arkansas Children's Hospital in Little Rock, Arkansas. 

On Tuesday afternoon I was able to speak to a technician in his office.  After listening to me explain the situation she offered me a 10:00 appointment for the next day.  I took it, called L and told him to start packing, made arrangements for GG, and let work know what was going on.  The irony of the situation?  Remember the retina specialist in Oklahoma City that didn't meet any of the requirements for inspiring trust and faith?  Well it turns out he has a brother in Little Rock who's also a retina specialist.  Huh?!?!

L's sister LE, and her husband D, had graciously offered to let us stay with them if we found ourselves headed to Central Arkansas.  Just before we left the house I called her to see if the offer was still available, and even though I gave her less than 4 hours notice and we would be arriving shortly before midnight, it was.

It turns out that they probably wouldn't have gotten to bed much earlier that night anyway since that was the night of the 2008 Super Tuesday tornado outbreak.  We were about 10 miles outside of Fort Smith, Arkansas when we received a call from L's cousin A warning us that we were driving toward the storm path.  I might have uttered a somewhat unacceptable (for mixed, young, and polite company) four letter word, but I kept driving and praying.  We had a 10:00 a.m. appointment and we were keeping it come hail, high water, or tornadoes.  We arrived safely, thank you God, and tried to get some sleep before facing whatever tomorrow would hold.

This appointment was the complete opposite of our experience from the previous week.  After examining NG he explained exactly what had happened to cause her sight loss, what our options were at that point, and what to expect in the upcoming future.  It was decided that we would return in four weeks for another exam to give Dr. Bradford a point of reference.  We made an appointment to return the next month and headed home.

We had hope for the first time in almost three weeks, but we also knew this was the calm before the storm.

1 comment:

  1. I'm not sure if my other comment posted or not, but there are more of us out there mama! Please email me, adenak86@gmail.com . I know myself and at least one other mother have daughters with bilateral morning glory syndrome as well, and we both have many questions!