Bergen Taylor Hightower

Tuesday, August 6, 2013

Isla Rose: The day we learned our daughter was diagnosed with LCA

Photo Credit:  Becca Bond Photography

Walk by Faith, Not by Sight.
I don't know where to start....
I am full of emotion as I type this post but I wanted to share with you all our journey -- so far -- with Isla Rose.
On July 31st, Isla Rose was diagnosed with Leber's Congenital Amaurosis {LCA}. The day we learned our baby girl was blind. And basically the retinal specialist informed us that there was no cure but a lot of options and research that could be done. It's hard to describe that particular day and moment in our lives but it is a day we will never forget. 
LCA is a rare inherited eye disease that appears at birth or in the first few months of life, a rare retinal disease that causes infant blindness, and it affects around 1 in 80.000 of the population.  YEP, that rare!! 
How did we know or what signs did we see?  Isla is now 3 months old an at her last checkup, we brought up a concern we had to her pediatrician that we felt she wasn't tracking, and that during play time she didn't focus on anything, not even our faces.  I, particularly, starting noticing more around two months because when I was nursing her I felt like she never "looked" at me. So, our pediatrician thought it would be a good idea to get her referred out to two different Pediatric Opthomologists here in Charlotte, NC.
We have a roller coaster ahead of us and a lot of homework. Now that we have a diagnosis we will now wait on genetics testing. On Monday, August 12th, Isla Rose goes to Levine's Children Center for a scheduled MRI at 6:00am.  We are are saying hard prayers they find nothing more to add to our baby girl's health. We have accepted the fact that she cannot see but we are not ready for any more heartbreaking news.  We also are not opposed to any research or testing or technology that doctors can offer us.
As parents, it is so painful to see our beautiful baby going through this. Raising a blind child will be different, but we can't say it's difficult -- not yet.  Isla inspires me to be a better person every day. I am now more protective over her than ever. She lifts my soul, amazes me and I fall in love with her harder each day. We are absolutely blessed to have her here and she has been sent for a purpose in mine and Douglas' life.
My prayers, my hope, is that one day Isla Rose will admire with her eyes, all the beauty in this world and be able to see. I've begged God and asked him to please let her see but I have to remember that He has a plan for her.
I don't want you to feel sorry for our baby girl.  She doesn't need our tears, she needs our love and support.  So I ask each of you to keep her in your thoughts and prayers as we continue to have testing and learn a little more about LCA.  I also ask that you keep Douglas and I in your prayers to help keep us strong.  Every day is hard on us emotionally but we try not to let Isla Rose feel that sorrow and hurt.
The day Isla was diagnosed with LCA, I truly believe I was brought closer to Him even more than the day she was born.  Visual blindness is one of the most powerful metaphors for the spiritual blindness we have at birth. 
A verse came to mind the morning of Isla's eye appointment.
 "You can make plans, but the Lord's purpose with prevail" -- Proverbs 19.21
I keep reminding myself that.
Isla Rose, we hold you closer to our hearts more than ever.
And to my loving husband, your heart is broken too but together we can get through this with love, faith and hope.
We will keep you posted on our journey.  If you'd like to learn more about LCA, you can click here: Foundation Fighting Blindness

Thanks for stopping by!


  1. Love you! God is good... all the time. His plan is perfect. Praying you feel the Lord's support and love for you all and my support and love as well!

  2. I'll be thinking about you guys. What a beautiful message about faith. I love the verse you had toward the end.

    I can't begin to understand how difficult this must be and the journey you are facing. But I'm sure she will be a light in your life that is brighter than you ever could have imagined. God has big plans for her even if you don't know what they are yet!

  3. The boys and I will be praying for all of y'all. So sorry.I love Hebrews 11:1. Now faith is the substance of things hoped for the evidence of things not seen.

  4. Hi, this just brought tears to my eyes remembering our "day." I felt the same feeling almost 20 months ago when we learned our baby girl is legally blind from her optic nerve hypoplasia. I too felt she never "looked" at me while I was nursing and our pediatrician suggested she see an opthamologist. Talk about a roller coaster. We went through 3 until we found one we LOVE! She also sees an endocronologist and has had multiple MRI's. At 11 months she had a stroke, and has a very rare disease called Moya Moya...completely separate from her ONH. Talk about emotions and feeling things a first time mom shouldn't have to feel! I can tell you the thing that has helped us grow to where we are today is meeting other Moms/families like us. We met Jennifer Weisner and her hubby at the NFB conference in Dallas last summer. What a wonderful family lto live near and learn from. We've watched their sweet Hudson grow, and it helps to know you're not alone. I know the gauntlet of feelings you are going through, so hang in there gets easier. :) Your sweet daughter is so beautiful and I love her name!! Our Lilly is almost 2, and brings more joy to my life then I ever knew possible. I'd love to follow sweet Islas's story! Best of luck to you and your family! Cari Farris