Karen - posted on 06/07/2011 ( no moms have responded yet )




Hi there

I am a mother with a blind baby who is now 5yrs old. I say baby as with no vision there milestones are way behind normal kids with vision.
If you know anyone who has just had a baby who is blind, please pass this advert on to them. There is a huge difference between a baby born with ROP, Retinaopathy and Optic Nerve Hypoplasia (onh)
Optic Nerve Hypoplasia is when the optic nerves of the eye are undeveloped, millions of wire cables going from the eye to the brain. When underdeveloped the message of info as to what you are looking at does not get to the brain to make a picture of what you are looking at.
Not many doctors know of this condition here in South AFrica. With ROP there are no other issues with this child, they will walk and talk earlier than a ONH child. With ONH there is Nystagmus of the eyes you can see when your child is 1mth old, its jerky eye movement , eyes that wont stay still and focus.
ONH kids need an endocrinist ASAP . Westville hospital Dr Kuben is an endocrinist. Hypopituritism of the pituritary gland is under developed. The pituitary gland is the gland which gives the hormones in your body ie thyroxin for the thyroid gland ensures your metabolism is balanced. An unbalanced thyroid as in under active can make your child really podgy and overweight.
As all kids with ONH either have the midline portion of the brain missing as the Septum or they have one side of the grey matter of the brain undeveloped as being ACC , Agenisis of the Corpus Colusum . I have noticed kids with the missing Septum dont have much sensory issues as in over stimulation to noises etc, they also talk or are walking early. though the ACC kids have major sensory overload issues and it can effect the one side arm and leg function and co ordination.
---The difference between a blind baby and visual baby at birth to 6mths .
A normal sighted baby will play in the cot and see the toys above them and move there arms to try catch or play with the item. A blind baby cannot see the toy in front of them to want to play or grab the toy. From this early stage of a baby the playing and grabbing of the toy is muscle stimulation as in excersice for the baby. Toys with bells or sounds should be placed lower than normal for blind babies as when they accidently bump the toy , the bell or item will make a sound they will want to hit it again.
A normal baby with vision will want to go get the toy across the room to play with it. A blind baby has no motivation to crawl as it cannot see anything. Muscle tone here again is happening to the normal sighted baby with the movement of crawling. With blind babies you have to show them movement. As when your child is watching you , as it has vision , he learns by what you are doing. How you get up, how and what you use to walk with , your legs, what your arms and hands are capable of doing it learns by watching you. With blind babies there life is in darkness, they do not know what is going on around them , but only the sound they hear. You have to take them to a physiotherapist to do muscle tone excersices or do them yourself at home. They teach the child protective modes as in when on a huge ball, on there stomach they are rolled over the ball, and with there hands you show them how to stop a fall for example. There are many ways to show a child what there body parts are for.
My son is now 4 yrs old. He was diagnosed with ONH at 2mths old. At1yr9mths he was diagnosed with SOD, septo Optic Dysplasia which he falls under the ACC issue as in the beginning part of the letter. He has thyroxine meds to help his thyroid, as he has hypopituritism . He has water diabetes, medically called Diabetes Insipidus , D1. You never hear of this condition when you hear about Diabetes anywhere. Its a sodium imbalance in the body , the body does not know how to regulate the water intake and exit of it. I used to curse the nappy liner people, he would pee straight through the nappy and very soaked. These are conditions of ONH kids. He started having spasm seizures at 3 yrs old. He is on medication now for it.
When a baby is 6mths old and just learning what the sounds are around him still from birth . How do you explain the roaring sound of a motorbike that just passed your car ? Or a 18 wheeler truck noise ? He used to scream from the sound . You cant say its a bike or truck, he hasnt seen one in the first place to understand the picture of what you talking about. Then there is the noise buzz in the air when you visit the shopping malls, sensory overload can happen some days. Also the scraping chair when a person gets up from a restaurant chair, I could scream when they do that . Pick up your chair for goodness sake ! but its normal for everyone to do that, they dont know I have a blind baby in the pram and Im wanting to try enjoy a meal out .
Repitition of words from birth and continuing to repeat what you are doing ,as in changing him , running the bath water etc, You have to tell your baby what you doing ,so by the sounds and what he feels you are doing around him he will click on and understand.
There is a company called BEIKE BIOTECH in the USA , who are working in china doing UMBILICAL CORD STEM CELL INFUSIONS, which are helping disability kids to see, and walk again. ANY DISABILITY. This is another topic I will write soon . If you would like to contact me regarding stem cells or need info or help on your blind baby , please email me or phone me.
As ONH is not really known to most doctors in Durban area, its important to know when your child is ONH , which endocrinist to see that knows about the condition , physiotherapist, and also getting gadgets made for your baby as in a jolly jumper for there weight , as they dont bare weight on there legs or feet till they know what there legs are for. Walking rings made for there height , as these walkers we have here only cater for normal sized babies and then they are walking. No one in SA caters for disability items for blind babies and kids. Not even larger prams. Longer is the length for legs from behind the knee to the feet, and higher backrest etc.
Fineally I have found a company called SHONA-QUIP. This company do all kind of disability equipment which they make up according to your childs disability and what is needed for them, and you may put it on your medical aid.
Contact Bronwyn at SHONA - QUIP 021-7978239 begin_of_the_skype_highlighting 021-7978239 end_of_the_skype_highlighting .
For prams which are larger in size contact Verna on MOBILITY AID EQUIPMENT 0836593020

View my website for Tyrese and see all the accupuncture , electric wave therapy and physio that was done on him when we went to china for stem cells. (password to enter is tyrese)

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