Ella’s Story: Raising a Child with Bilateral Anophthalmia

Written by MAPS MOMS Microphthalmia Anophthalmia Parent Support

Updated on January 11, 2023

By Jill I.

I took a picture of the little home pregnancy test. I had started buying the high tech ones that actually say “pregnant” or “not pregnant.” And Pregnant was staring me right in the face. Truth is, I had stared at Pregnant three times before in the past two years.

And each of those times had ended abruptly with no explanation and the mind numbing loss from yet another miscarriage. But on that chilly November morning, I felt much different. Less guarded. More excited.

I had a peace right away that I would see this pregnancy through to the end. I would finally hold that sweet baby in my arms we had waited so long to have… and fought so hard to keep.

Jeremiah 29:11 had been my inspiration: “For I know the plans I have for you,” declares the Lord. “Plans to prosper you and not to harm you, plans to give you hope and a future.”

I nearly knocked my husband out of bed as I bounced around waving the test in the air and thinking… FINALLY!

Considered “high risk”, I had nearly 20 ultrasounds during my pregnancy, including a Level 2 and a 3D ultrasound. I would leave every appointment with another fuzzy black and white photo of a little peanut dancing around, body parts labeled… chin, arms, legs, face, eyes. Everything always looked normal.

I continued to glow as summer arrived – loving every little thing that I was able to get away with and simply blame “being pregnant.”

On June 23, 2006, at 34 weeks, little Miss Ella decided it was time to make her grand entrance. Surprise, Surprise!! The nursery furniture had not even been delivered yet. Every shower gift was still in its box. I had nothing organized! Wait!!! I still had six weeks!!!!!

As I was just finishing that thought, Ella was placed in my arms in the delivery room and we stared down at our daughter… drunk with love and affection for this little person we had just met. She kept her little eyelids closed tight. No big deal, right? Not every baby opens their eyes in those first few minutes. Right? In a flash, she was taken from me and placed in the NICU where I later visited and wondered why she had not yet opened her eye lids. I gave every excuse. She is so early… she is still so tired from the delivery… she is sooooooo sleepy.

The nurse left and I was alone with her for a moment. I touched her face, her eyelids. I felt nothing behind them. No. Oh, no. How could this be? I thought for sure with all I had been through, I would have to be a top candidate for a perfect baby, right? How could this ever be the plans the Lord has for me? I simply prayed that I was wrong.

The next morning when the Doctor confirmed by MRI that Ella was indeed born without both eyes, I felt even the sturdy concrete of the hospital hallway was not going to be enough to hold me as I slumped slowly down the wall. My body shook with tears of sadness and confusion. We were also told that she could possibly have brain damage, hearing problems and heart issues. “Plans to prosper me and not to harm me?” I did not think I could take this news. My brain would simply not process it. I wept freely at the death of so many dreams I had for our first child.

We would be transferred in two days to the Children’s Hospital at the University of Michigan where some of the worlds best Ophthalmologists, Cardiologists and Neurologists would access our little girl. I felt as if I might not even last for two days. Back in my hospital room, our friend Lucy Ann was waiting. She had traveled a great distance to see us and our new baby. I felt like I could not face anyone. But, the instant I saw her, I suddenly realized very clearly that I had only two choices. Spend the rest of my life in denial, hiding from people, or embrace the life that the Lord has in store for my family. I know that God sent Lucy Ann that day to help me come to this realization.

As she hugged me tightly, I prayed for the strength to face the dark cavern of unknown that lie ahead.

The specialists at Michigan ran tests to quickly rule out brain damage and deafness. We were told that the two small holes in her heart would most likely close with muscle growth and that her condition was “isolated” to her blindness. They simply wanted to keep her in the NICU at Michigan until she could eat on her own and gain some weight. She was healthy!

We had researched her condition, bilateral anophthalmia. We spent hours learning to spell & pronounce it correctly. We made an appointment to see the Ocularist at the Kellogg Eye Center. We were pressing ahead. In mere days we had gone from terrified and unsure to knowledgeable and confident. This much I know is true. God not only held us, He cradled us in the palm of His hand the whole way. “Plans to give us hope and a future.” We found comfort in Him even though we were still wondering why He chose us.

I recalled the truth of a passage from the book Let’s Roll! by Lisa Beamer. It reads:

The plans God has for us don’t just include “good” things, but the whole array of human events.

The “prospering” He talks about in the book of Jeremiah is often the outcome of a “bad” event. Many people look for miracles. Things that in their human minds “fix” a difficult situation. Many miracles, however, are not a change to the normal cause of human events; they are found in God’s ability and desire to sustain and nurture people through even the most difficult situations.

I will admit that at the time, I desperately wanted a “fix.” I wanted my little girl to be perfect. What I didn’t realize then was that she WAS perfect. IS perfect. Perfectly the way God created her.

I love my daughter so much at times I feel as if my heart might burst right out of my chest. I am so incredibly proud at her accomplishments in her short 14 months of life. She laughs out loud all the time. She leans in to give you kisses on your lips. She puts her little hands over her prosthetic eyes to play peek-a-boo. (really… how the heck does she know to do this???!!) Talk about amazing us at every turn.

But please don’t get me wrong… there have been & will be many, many times I have ached with pangs of grief at what she will never visually experience. A beautiful sunset over the vast ocean. The raw beauty of a snow capped mountain range. Her Daddy’s handsome face.

Not one of us can know why God chooses to give people certain abilities… and chooses not to give those to others. We received a card when Ella was born that contained this quote from Alan Redpath. I am not sure if the person who sent it will ever know how much peace it has given us:

There is no circumstance, no trouble, no testing that can ever touch me until, first of all, it has gone past God and Christ right through to me. If it has come that far, it has come with great purpose, which I may not understand at that moment. But, I refuse to become panicky, as I lift up my eyes to Him and accept it as coming from the throne of God for some great purpose of blessing, to my own heart.

Ella has blessed our hearts so much more than we could have hoped or imagined. She teaches us about things that we sighted people take for granted. She is our perfect first child… the one we had prayed for, fought for, dreamed about and loved for so long before she was even born.

Read this article in Arabic: حيوا-السيدة-العمياء