Saturday, December 27, 2014

Optic Nerve Hypoplasia

Today I am going to do a little update on our baby "K", for those who have been following her stay here, are praying for her and know her.  This post is going to have quite a bit of medical talk in it, so please bare with me, as it may help or encourage someone else going thru anything similar with their child.

When we were contacted to take in baby "K" as a foster placement, we were told that she was a four week old preemie, that was heavily drug exposed thru the whole pregnancy and had some feeding difficulties.  We prayed about it and took her on a one week trail placement.  By her second day here, we knew she was meant stay, as she fit into our family so well.  She has been the best baby we have ever cared for.  She is good natured, pleasant all the time, sleeps well and is very laid back.  We all love her dearly and have commented, how just spending time with her relaxes us and brightens our day.  We have all said at one point or another that we need some baby "K" time.  She is beautiful to boot and an amazing blessing to us for as long as God chooses to have her with us.

But...she has had many medical issues make themselves known the longer she stays.  This often happens when doing foster care of an infant that was as drug exposed as she was.  It is like unraveling a mystery when trying to get to the bottom of all the health issues.  We see something that is not right...we go to the pediatrician about it...get sent to a specialist...and they send us to two or three more.  We have been to so many appointments this year with our foster placements, I am ready for next year to begin.  I am going to try to keep my schedule lighter in 2015.

The very first day baby "K" came to live with us, I noticed her very low muscle tone.  It was worse than Elizabeth's or Zeke's when they were infants and they both have Hypotonic Cerebral Palsy.  Her joints pop, creek and her bones slide in and out of place when I bathe and dress her.  I am very gentle and it never seems to bother her.  When she came, she had strabismus and nystagmus as well.  After she had been here for a few months, I also noticed that she never made eye contact, didn't track objects and only reacted to light and dark.  I was very concerned, as usually by two to three months old, all of the infants I have ever had in our care, could do these things.  Praise God the strabismus has improved and nystagmus stopped when she was four month old.  An MRI was scheduled and a trip to the Pediatric ophthalmologist.  The MRI showed she had Hypoplasia of the Corpus Collosum.  (Very thin bridge that connects the two halves of the brain)  This explained a lot, as she was very behind in meeting any milestones and never used both halves of her body together to do anything.  She actually just started to use her left arm a little in the last eight weeks.   She was also diagnosed with Hypotonic Cerebral Palsy when we were at the neurologist.

In September, when we went to her ophthalmologist appointment, the doctor said it looked like her optic nerves were ok.  At that appointment he said she might have Cortical Visual Impairment or Delayed Visual Maturation.  But we went back in November and he said he could definitely see the optic nerves were smaller than they should be and diagnosed her with Optic Nerve Hypoplasia.  We were not surprised at this diagnosis, as were told this condition often goes hand in hand with the Hypoplasia of the Corpus Collosum. (when she was diagnosed with that)  He said that her right eye optic nerves were much smaller than her left and that the left was slightly small than they should be.  So now we at least have a diagnosis for her eyes.  I must say that over the last many months she has begun to use what vision she has.  It still does not seem normal.  But she will smile at me if I smile at her first, if I am with in five feet of her.  She looks around at things, does slowly track things now and loves to look at TV, kindle and I-phone screens.  She seems to see things better if they are back lighted.  The ophthalmologist said we will not know the extent of her vision, till she can speak or be tested better when she is around four years old.  He did decide to hold off on surgery for her strabismus because her eyes are lining up more and more as she uses what vision she has.  Those muscles are getting stronger.  Praise God!  Remember how I said sometimes we go to one appointment to walk away with another appointment?   Well, Optic Nerve Hypoplasia is one diagnosis we were praying she did not have, as it usually has a whole slew of other health issues that go hand and hand with it.  These health issues that are all hormonal, are tied to the pituitary gland and can appear at any point in her life.  She will need to be tested for Hypothyroidism, Hypopituitarism, Estrogen, progesterone, cortisol levels for Addison's disease, Hypoglycemia as a side effect of many of these diagnosis, antidiuretic hormone and growth hormone regularly the rest of her whole life.  Whew.  Any of these thing plus seizures could happen at any age her whole life and need to be watched for.  She will also need to be followed by the ophthalmologist, as most people with this are blind or legally blind and are at a higher risk of cancer on the optic nerves. I am very grateful that she can see, as when she came we knew she could not.  So any vision is better than none at all.  It has improved so much, we are praying it will continue to do so.  God is so good.

So over all...  Baby "K" is just turning 8 months old.  She is missing some of her brain bridge that connects the two halves, so that is making it very hard for her to learn to use the two halves of her body together to do things like play and move.  She has very low tone cerebral palsy and that is also hindering her from having the strength to do what she wants to do and progress.  She has qualified for Physical therapy and Occupational therapy.  She still aspirates on her saliva, so does not cry or try to coo much, as it throws her into a coughing fit, from the saliva being aspirated and she does not like that.  I still have to thicken her formula or she aspirates.  She is however, doing well with eating thick baby food from a spoon.  Things like Avocado, Sweet potato, vegetables and fruits. She actually likes to eat better than nursing.  As she does not choke at all when eating.  She is in feeding therapy as well.  She has always been extremely constipated, with her over all low tone, making it very hard for her to potty.  Since starting foods, this has helped her so much in that area.  Her optic nerves are to small and underdeveloped, so her vision is impaired but we don't know to what extent yet.  We are in the process of getting an appointment with an endocrinologist, to check out all of the things that can be effected by having optic nerve hypoplasia. 

Now for the progress report!   Baby "K" started out very small but is now in the 95th percentile for height and weight.  Yes, a very big girl.  She takes a 12 or 18 months size clothing and is just turning 8 months old next week!  She can now roll over front to back and back to front!  She can hold her head up and pivot around in a circle, on her tummy on the floor, to play with toys.  She can sit in the highchair if I have a towel around her middle to help her.  She can hold a toy, reach for a toy and is now finally using both hands to play and can transfer a toy from one hand to the other.  She also just started to put in her own passifier if I hand it to her.   She also can now jump a little when in the bouncer/play gym. 

Baby "K" is really a joy.  She has been a gift from God, to our life and home. We have seen God already do such a huge work in her life and body.  Even though she has been a lot of work in so many ways, she is well worth it, as all children are.  She is so sweet, that the work to care for her is a joy.  We all love her so much!

1 Peter 1:8-9  Whom having not seen, ye love; in whom, though now ye see him not, yet believing, ye rejoice with joy unspeakable and full of glory:  Receiving the end of your faith, even the salvation of your souls.




  1. Oh Susan, she is just a doll! And wow! What a growth spurt!! (Which reminds me- Elizabeth has really grown a lot too!!!)
    Several of my boys had strabismus, and their eyes either completely corrected or are 90% in line now! Amazing!!
    We've had 2 kids outgrow nystagmus and one did not. After my stroke I developed mild nystagmus, usually only a problem when I'm tired.
    Our Faith had the worst constipation of any baby we've had and she did not have low tone. We'd actually had to remove it often or do lower half body exercises to encourage it to come out! Now she can drink more fluids and she takes stool softeners. Our constipated babies were always hard. Most often due to formula issues. But not Faith! I don't miss those days! :o)
    All of our boys from orphanages came home with acid reflux and diahrea. It took at least 12 months for them to stabilize! I don't miss those days either- LOL! :o)
    Some would think what we deal with now is hard- little do they know it often starts out harder! Of course with God all things are possible!
    ((((((((((HUGS)))))))))) and prayers

    1. Elizabeth, Do you think that the boys eyes are better because of better nutrition or that they are in an active home and using their vision more? We are hoping her stabismus will continue to get better and she will not need the surgery. It does get worse when she is tired. So Faith had terrible constipation too? I wonder if that is a FAS thing, as Carolyn struggles with it as well and her tone is a little low but not terrible. I laugh and agree that when the children first come it is often so very hard. It gets better so slowly that I often do not see it unless I look back and remember. Then I am like. Wow. God sure has done a miracle! Praying for you and your family always. Blessings!