Kalena – Optic Nerve Hypoplasia & Blind

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Kalena Jade Medeiros was born on December 23, 2010.  This day was filled with so many emotions.  I got to hold my angel for the first time; I, like every other mother, was overjoyed.  Shortly after I nursed her for the first time, she was taken to the nursery for the typical testing that is done there. One of the nurses came to my room; she informed us that they were having a hard time regulating Kalena’s blood sugar and that she would have to stay in the nursery until it was at a safe level.  At this point, I really didn’t think much of anything that we were just told.  It wasn’t until days/months following when I started to put everything together. We had to stay in the hospital for 7 days after Kalena was born.  I was going into the nursery every 2 hours to feed her so her sugar levels didn’t drop too low. They had to do a blood draw every 2 hours.  Kalena was hooked up to IV’s in her arms and legs. She ripped the IV out of her arm twice, so then they put it in her leg.  I was so heartbroken.  Never once was I told why this might be happening, or if there were any underlying issues.  Once we were discharged, Kalena still needed blood samples taken every 2 days for a month.  She was also borderline jaundice.  She was never put under the lights for the jaundice, but it did last for close to 2 months. (We found out later that both low blood sugar and prolonged jaundice are both signs of her condition.)

Carly Medeiros 8

Fast forward about 3 ½ months… I was reading articles on what my baby “should” be doing.  Some of the things I was reading included her having a “favorite color,” “favorite toy,” her “responding to smiles appropriately,” and “tracking faces/objects.” Kalena didn’t seem to be displaying any of these skills.  I was worried.  I had told her pediatrician that she doesn’t seem to be tracking anything.  After looking into her eyes herself, she then recommended us to an ophthalmologist.  We didn’t get into the specialist until Kalena was 7 months of age.  By that time, we knew something wasn’t right.

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We arrived at the doctor’s office, and the first thing he did was dilate her eyes.  After looking in her eyes for about 30 seconds he said the words that I will never in my life forget. “ Your daughter has what is called Optic Nerve Hypoplasia, or more often referred to as ONH. Basically, it’s the underdevelopment of the optic nerves. There is no known cause or cure for this condition.  At this point in time, it doesn’t appear as if your daughter sees much, however, she may have some light perception.”  My heart shattered into pieces in that moment.  I think it was especially hard for me to process, because never did I once think going into this appointment would I be told my daughter was blind.  Maybe, I thought she would need glasses or some kind of surgery, but never did I think I would be told she could not see.

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1 in 10,000 babies are diagnosed with Optic Nerve Hypoplasia.  It is very rare, and each case is very different.  Unfortunately, being blind or visually impaired is not the scariest part about the diagnosis.  Our kids have to be tested every 3-6 months for the rest of their lives for possible hormonal deficiencies.  The most common hormone deficiency is the growth hormone.  That is however, treatable with a daily injection of a growth hormone replacement.  There are several hormones that can at any time just stop functioning the way they should, and one of those is extremely life threatening.  This is the main reason why our kids will always have to be tested.  This is definitely a spectrum disorder. Some kids are blind in both eyes and need many hormone replacements, while others may only be slightly affected in one eye and do not need any hormone replacements at all. We are fortunate at this time that Kalena does not have any hormone deficiencies.  It’s such a learning process and it really is amazing for me to see the world through her eyes.  She is the light of my life, and although each day brings new challenges I am truly blessed.  She’s perfect, in every way.

Carly Medeiros 10 Carly Medeiros

“For we walk by faith, not by sight.” 2 Corinthians 5:7

4 Comments

  • christin hardy says:

    can someone possibly put me in contact with the mother of this child? My son has ONH in his one eye and is completely blind in that eye, and has had the blood sugar level issues and growth restriction and the drs have had no luck finding a reason why no medical tests can show why he has the issues, would love to touch base with her on resources that might help our little guy

  • Bobbi says:

    As a grandmother to a 2year old girl who has ONH/SOD (Septo-Optic Dysplasia) I
    empathetically read little Kalena’s story. Each day is indeed a learning and
    often challenging experience. There’s so much to learn about their condition with all it’s facets, and of course you want to do the best for them. But when they’re
    so young, before talking or reading, or if there are mental challenges as with some children, it is easy to get overwhelmed. Here in Indiana, we have VIPS. (Vision Impaired Preschollers), MAGIC (in Chicago), plus One Small Voice on the Internet for invaluable resources. It’s not the journey we expected, but it’s what it is. As a family, EVERYONE adores all 19.8 lbs. of a tiny, vivacious Vivia! I encourage anyone else dealing with this to taket each day as it comes, and to enjoy your unique, precious little child, because they still are wonderful little blessings!

  • Linnea says:

    One of my daughter’s conditions is bilateral ONH as well, but she’s only had her hormones tested once and we were told it doesn’t affect her vision (she’s already legally blind because of other conditions). I’m definitely going to look into this more to make sure the doctors are taking proper precautions! Thank you for the information!
    By the way, your daughter is just stunning! What a beautiful, beautiful girl!

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