Tag Archives: microphthalmia

A Phone Call I Won’t Forget

8 Mar

images (19)
On Saturday May 9, 2009 I got one of the few phone calls that I will never forget. How do I remember the specific date? Because we were celebrating Oli’s 2nd birthday.

We were having some family and friends over to the house to celebrate Oli’s special day. We were just getting ready for everyone to arrive when my cell phone rang.

“Hello?” I didn’t recognize the number on the display.

“Hi. My name is Bridget. I got your number from Tanya from the Albert Einstein Medical Center. I’m 22 weeks pregnant with my first child and I was recently told that they suspect that she has microphthalmia. I know you have a daughter with micro and I just had some questions and wanted to talk.”

It seemed like all of the breath was expelled from my lungs in one quick whoosh. My heart dropped to my stomach and the moment became imprinted in my memory. This woman was going to have a baby girl just like my Oli. I was one of the first people she reached out to. I knew how terrifying those first few weeks were when Oli was born. I remember searching for just one person who knew what I was going through. I found that one person and I still remember my phone call with her. Now I got to be that person. I got to offer another mother the same compassion and understanding that was offered to me.

I wished I could reach right through the phone and wrap my arms around this stranger.

“Where are you?” I asked.

“We’re just outside Austin, TX.” She answered.

Now, I was stilling living in Pahrump, NV at this time. Seth and I hadn’t even discussed moving yet. Well…we had discussed it, but we didn’t know where we were moving to yet.

Fate, strange coincidence? I don’t know. I find it eerie that we ended up moving about an hour away from Bridget just a little over 5 months later. We’re still friends, although she has since moved away to be closer to her family in St. Louis, MO.

“I’m so glad that you called me! I would love to talk with you about Oli and help you in any way I can.”

I remember carrying the phone into my bedroom, mouthing “another A/M (anophthalmia/microphthalmia) mom to my husband, and closing the door. I sat on my bed and asked Bridget to tell me her story. How she found out, what she knew about micro, and most importantly, how she was feeling. I remember she sounded scared, lost, and overwhelmed. But, she had something in her voice that I had been missing. Something that I pretended to have, but always fell short of achieving.

She had faith in her voice.

A lot of babies born with microphthalmia have some sort of vision. If the eyes are not too underdeveloped they may have some usable vision or light perception. Sometimes only one eye is affected and the other eye is normal. If the micro is severe enough, then the kids don’t usually have any sight and sometimes even when the micro eyes are not severe, there is no vision because other structures are involved. Like underdeveloped optic nerves. Basically….one just never knows until the babies show us that they can see or not. Anophthalmia means the eye is missing completely. This also can affect only one eye, the other being normal, or it can happen in both eyes. You would think that the kids with bilateral anophthalmia would not have any vision at all. You would think that they would be 100% blind because, well…because they are missing their eyes. Not true. I have heard of some kids with anophthalmia in both eyes and these children display signs of having light perception. You just never, ever know. You cannot say with any certainty that a baby is blind until they absolutely prove to you that they are.

When Bridget went in for a routine ultrasound the tech noticed that her baby’s eyes seemed small. Upon further testing/measuring the eye sockets they realized that they were really small. Although, no one knew the extent of the underdeveloped eye sockets. They wouldn’t know for sure until her baby was born.

For a long time after Oli was born I would think about what it would have been like if I had known about Oli’s eyes before she was born. Most people don’t know until birth because eye measurement just isn’t something they do with a routine ultrasound. They only do it if the tech notices that the baby’s eyes look small. I can make arguments about which would have been better for me, knowing or not knowing.

On one hand, I’m glad that I didn’t know because I got to enjoy my pregnancy. As much as I can enjoy being pregnant, which is not very much. I didn’t dread her delivery or have to worry about what would happen afterwards. For people like me, this was a very good thing. My mind has a hard time staying in today as well as suffering from constant abuse from my nemesis, Gertrude. That little old lady would have made my life a living hell in the months before her birth. If I would have known I would have been plagued by a constant rush of bad scenarios and terrible outcomes running through my head.

On the other hand, if I would have known, maybe I would have been better prepared. Maybe I could have talked to another A/M mom before she was born. Maybe it would have helped. Maybe not? Maybe I would have been paralyzed with fear and raging pregnancy hormones. Maybe….

Now it doesn’t really matter. Not knowing is just part of my story.

I talked with Bridget for a long time that warm day in May. I tried not to let my sadness or my fear for her creep into my voice that day. I tried to just listen and offer her whatever I had that might give her some peace. The truth is…Bridget already had it. Although I’m sure that she was scared, she already had a sense of peace about her because Bridget had faith in something bigger. Faith that her baby would be born exactly as God had intended and she knew that her baby would be well taken care of.

Her baby girl was born in September 2009. She has bilateral anophthalmia. She is totally blind.

And she perfectly named her baby….Faith.

If you want to read more about Bridget and her sweet Faith go to www.superbabyfaith.com

imagesCA4MXAL0

Advertisements

Oli’s Prosthetic Eyes

6 Mar

Today Oli’s daddy drove her to Dallas to get a new pair of eyes. Every 3-6 months Oli sees her Ocularist, Randy Trawnik, and he makes her a bigger pair. Because she has anophthalmia (missing eye) on the right and microphthalmia (little eye) on the left, her entire eye structures on both sides are underdeveloped. The goal of the prosthetics are to increase them in size each time she gets new ones. It therefore stretches out the sockets and it makes the eyes bigger. Her left eye is almost at normal size due to intensive conformer therapy (I use conformers, painted conformers, and prosthetics interchangeably)

Here are some pictures of Oli’s prosthetic eyes. If anyone has any questions about them, please ask. I’d love to answer any questions you may have.

These were some of her first peg conformers. Remember “OMG! What did you stick in her eyes!”? Well, these were the awful ones prompting that response from people.

picture050picture051

This is one of the first painted conformers that she got. Only the iris was painted because we needed to leave the rest clear just in case she had any light perception. Until we were absolutely sure that she didn’t it stayed clear. Now we know that she doesn’t see anything at all so the whole thing can be painted.

picture053

These are some of the last ones that her Ocularist in California made her before we moved to Texas. They were getting really thick because the socket was stretching so much and it became deep. The conformers had to fill most of that space so they wouldn’t fall out. Also because they still needed to push against that tissue at the back of her socket so it would continue to stretch. She eventually had a surgery last year and she got an implant in that right eye. Now the conformers don’t have to be so thick.

picture052

picture055
picture054

These last pictures are of her custom fit prosthetics made here in Dallas. Her Ocularist puts her to sleep once a year and takes molds of her eyes so he can make them fit exactly in the shape of her eye.
picture049
picture047

picture048

Memorizing the Cars Movie was not an aspiration of mine.

6 Feb

“Love doesn’t make the world go ’round. Love is what makes the ride worthwhile.” -Franklin P. Jones quotes (American Businessman, 1887-1929)

Our first trip to see the ocularist in LA was just a little traumatic…for me. Oh, you were worried about Oli? No, she was fine. I mean she cried a little bit when her ocularist Mr. Haddad first put her new conformers in but, it only took literally about 5 seconds for each eye. At least for her first set.

As her eyes stretched and the conformers got bigger sometimes it was hard to get them past her eye lids. She has only had a couple sets that were really difficult to get in. Once they are in they’re not painful.

Well, wait, I guess I don’t know that they’re not painful since she can’t tell me. I don’t think they are though because Oli doesn’t try to claw my eyes out or maim me in some way which is what she does when she is in pain.

The trips to see Mr. Haddad, and later his partner Beverly, were exhausting. We drove 6 hours (one way) to Hollywood, CA from Las Vegas every 3-4 weeks. We were usually gone about 14-16 hours total because of the time it took to snail through traffic in Los Angeles. We never stayed over night because it was just too expensive and usually one of us had to work the next day.

We took both children with us every single time. Kekoa was 19 months old when we went the first time and Oli was 2 months. To say that it was a little stressful sometimes would be an understatement. But that is what Oli needed so that is what we did.

Thank God for little portable TV’s you put in the car. However, if I never hear or see the movie Cars again it will be too soon. Kekoa watched that movie at least twice every time we went, for 2 years.

I’ll let you do the math.

Let me tell you, you get to know your spouse far more than you ever really wanted to cooped up in a small car with 2 crying children for that many hours. Driving that far so frequently was not without humor either.

I remember one night (actually the wee hours of the morning) we returned home after one of our trips. Seth got into the shower and then immediately laid down in bed and passed out. I was still awake reading when he shot up and out of bed in a panic 30 minutes later.

“Seth! What’s wrong? Are you okay?”

“I almost crashed the car Shannon! I almost crashed!”

“What?”

Apparently he was dreaming that he was still driving and thought he had fallen asleep at the wheel. It was HILARIOUS!

I know when he reads this he will give me his usual response to my rendition of this story.

“Shannon, it was NOT funny.”

It was.

I also want to dispel a common myth about Oli’s “glass eyes”.

They are not made out of glass any more, they are made out of acrylic. There, now you know. It bugs me when people say “glass eyes” I don’t know why, it’s silly. I know…I have issues.

Here is a little history about prosthetic eyes courtesy of Oli’s new ocularist Randy Trawnik.

A Brief History of Ocular Prostheses

The art of making artificial eyes has been practiced since ancient times. Egyptian priests made the first ocular prostheses, called Ectblepharons, as early as the fifth century BC. In those days, artificial eyes were made of enameled metal or painted clay and attached to cloth and worn outside the socket.”
photo_history_1

The first in-socket artificial eyes made in the 15th century were made of gold with colored enamel. In the latter part of the sixteenth century, the Venetian glass artisans discovered a formula that could be tolerated inside the eye socket. These early glass eyes were crude, uncomfortable to wear, and very fragile. Even so, the Venetian method was considered the finest in the world. They kept their methods and materials secret until the end of the eighteenth century.
photo_history_2
In the 17th century the center for artificial eye making shifted to Paris for a time. Improvements in techniques and materials followed. The French word oculariste was given to the makers of artificial eyes.

photo_history_3

In the mid-nineteenth century, glass artisans in Thuringia, a region in eastern Germany, developed a superior glass formula for the making of artificial eyes. Combined with their techniques of blowing hollow glass objects, the center for glass eye making moved to Germany. The methods of making hollow kryolite glass prosthesis are still used today in Germany and many parts of the world. Glass eye making was introduced in the United States in the mid 1800’s by immigrant German ocularists. Although the American Ocularists of this era continued to make glass prostheses, the kryolite glass material itself was exported from Germany.

The onset of World War II cut of the export of kryolite glass to the United States. With so many injured soldiers needing artificial eyes, the U.S. government searched for a replacement material. Almost immediately the new plastics industry came to the rescue. Medical plastics were already being used in the dental field before World War II. The Department of the Navy set up a crash course in applying plastics to the field of Ocularistry that lead to the development of medical grade acrylic plastic and its use in eye-making. Combined with the use of impressions in the design of the artificial eye, modern prostheses can be perfectly fit for each individual patient. The popularity of these methods has continued to increase over the years. Today the vast majority of patients all around the world wear ocular prostheses made of acrylic.

A medieval torture tactic

26 Jan

“I liked things better when I didn’t understand them.” -Bill Waterson

So that’s what I did. I just took her home. I didn’t have a battle plan or an army and I certainly didn’t have a force field. I had the only things I could offer her at the time. I had an infinite amount of stubbornness, a heart bursting with love and two eyes that I would share with this little girl for the rest of my life.

An enormous amount of weight settled on my shoulders that day as I strapped this tiny person into her car seat. I could feel the weight threatening to suffocate me.

Before I left the hospital, my sister in law, gave me a website. It was for an organization called ican. International children’s anophthalmia and microphthalmia network. www.anophthalmia.org I did not know that this information would become a life line when I began my adventure into the unknown.

I did know that no one in that hospital had ever really seen a child born with this condition. The only person they could direct me to was a pediatric ophthalmologist.

So before I left the hospital I googled ican. It was full of people,terms and images that were so foreign to me, I had a hard time comprehending what they were saying.

I didn’t know what an Ocularist was. This was a profession? I had never heard of it. Of course, I had never heard of a baby born without eyes either.

So I googled ocularist. Apparently he was some sort of artist that made these things called conformers.

I googled conformers and was overwhelmed by what I read. An ocularist makes, and then forces these conformers into the eyes of anophthalmic and microphthalmic children in order for the eyes to stretch big enough to wear painted prosthetic eyes. At the time, this sounded like some kind of medieval torture tactic.

What? This sounds barbaric! Wasn’t there some kind of new technology for these children? Something not so painful?

We would have to do this every month for years in order for her to wear prosthetic eyes. And it might not even work. Her eyes might never stretch enough to wear prosthetic eyes.

It said that we would need to start this process as soon as possible to give her eye sockets and eye lids the best chance of stretching. Then I read on another web site that if I didn’t do this to her, her face might cave in. (Untrue, but I didn’t know that until talking with other parents.)

I had to turn off the computer. I grabbed Oli’s little pink newborn blanket, buried my face in it and just cried. I cried for myself, I cried for her, I cried for Kekoa and Seth. I cried like I have never cried before. I did not want to do this. I did not want to have to put this little baby through procedures that would hurt her.

What kind of a mother volunteers her baby for pain?

But, I didn’t want her face to be deformed either.

I cried harder.

And then I picked her up and whispered “I’m sorry” again.

Her eyes were closed

21 Jan

Life is what happens to you while you’re busy making other plans.” – John Lennon

 

 

Oliana entered this world on May 10, 2007 with her eyes closed.  I never got to look into my baby girls eyes and form that instant bond with a ‘Hey! I know you! You’re the one I’ve been loving since the day I peed on that stick!’ 

Her eyes were closed because they were fused shut. They had not developed.  Severe bilateral microphthalmia.  That’s what it says on all of her paperwork.  It probably should have been etched on her forehead for all the times we referred to her as having “it”.  This had become who she was to me and to people around her.  My baby with severe bilateral microphthalmia.  Somehow these 3 words would become as familiar rolling off my tongue as her first name.  Which is very very wrong.  But that’s what it was.  She had become not my new baby girl.  But my baby girl born blind.  Born with severe bilateral microphthalmia.  She had no eyes.  These words were repeated over and over in my head during the next few months.

 

The moment the doctor said blindness, the little blond haired, brown eyed girl I had been dreaming about for 9 months died.  She died and I didn’t know that I was allowed to grieve for her.  I thought I had to become this perfect mother of a special needs child.  I could not allow the outside world to know that I was hurting so terribly inside.  In place of the little girl I had lost was this tiny baby with blond peach fuzz on her head and no eyes.  A baby I didn’t think I was capable of taking care of, nor did I know if I wanted.  I knew I could never abandon her.- (gasp) What would the neighbors think?-  But I didn’t know if I would be able to love her like I loved my son.  Because she was different.  If she didn’t have eyes what else was wrong with her?  Was her little brain a mess too?  What if she never walked or talked or could eat on her own? What if she never went to college or got married.  Even more horrifying, what if I had to take care of her for the rest of my life?  No. They got it wrong.  It has to be wrong!  I never signed up for this.  I ordered the little cute blond girl with pigtails in her hair and brown eyes to match mine.  I remember the day I got married.  I signed a bunch of documents including a marriage certificate, a give-up-your-last-name-and-assume-your-husbands-identity- page, and I definitely signed the one where you check the box under, you will have a happy life with rainbows and butterflies raising 2.5 HEALTHY children.  Not a disability.  I DEFINITELY did NOT check that box!! They delivered the wrong baby girl.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.co.uk/

Motherhood and Country-Coastal Living

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: