Mum of 2 Charlotte tells us about infant blindness and how it effects her family

Having had a baby nothing can prepare you for hearing news that your child has an illness or something that sets them aside from other children. We speak to Charlotte a mum of two who’s daughter has infant blindness. Find out how it effects her family and what it means to her every day life.

Can you tell us a little bit about your family

I am a single mother of two children, Sonny who is 2 and a half and Scarlett who is 3 and a half.  The condition I am discussing is Optic Nerve Hypoplasia, it is a congenital condition.  It refers to the under development of the optic nerves in the brain.  So basically the eye works and the brain works but the wiring that sends the messages to the brain are shorter or there are fewer than ‘normal’.  Scarlett’s is severely visually impaired and has no vision.

How did you find out about Scarlett having this condition?

At 4 and a half months old we decided to take Scarlett to the Opthamolgist after we determined that her eyes didn’t really fixate on anything.  Following an MRI scan it was determined that Scarlett had Optic Nerve Hypoplasia.

Had you herd of the condition before and how has living with someone with it changed your perception of it?

It was the first I had heard of the condition.  I had never encountered infant blindness before.

What are the symptoms?

Other than sight impairment it can effect children in many ways and the child’s hormones can too be affected as the under development is around a gland in the brain that regulates all the hormones sent into the body.

What are the possible complications?

A high percentage of children with this condition can experience development delay.  Scarlett is massively delayed in many areas, such as her speech and fine motor skills.  There are also lots of learning difficulties linked to this condition and hormone problems.  Some children need to have certain hormones administered to them artificially to compensate for abnormalities.

What is the cause?

There is no known cause for this condition.

How is it diagnosed?

MRI Scan.

How is it treated?

There is no treatment for the loss of vision, hormones can be given if there are any abnormalities

What does this mean for Scarlett?

Scarlett’s vision is so poor that we don’t expect there to be any improvements.  With other children there can be a massive improvement in vision.  The sight never gets worse!

Is this on-going or does it have good and bad days?

The development delay is difficult, as parents we all want our children to grow and learn.  I more than anything want to have a nice chat with Scarlett and for her to have the ability to communicate.  I would love her to be able to speak with Sonny her younger brother and it amazes me everyday all the new phrases he comes out with.  Feeding, walking to the car and requesting are all things parents take for granted, sometimes with Scarlett its like having an extremely large baby as she is unable to do a thing for herself.  I notice now with Sonny’s new found independence how much easier life can be, but with Scarlett she might as well be in a baby seat.  I have to guide her everywhere and tell her everything.

How often do you have to visit the Doctor/hospital?

Scarlett has a relentless amount of appointments.  No so much the doctor or the hospital but more the various therapists involved.  We have the VI team, mobility team, speech and language team, learning disability staff and an Early Years Keyworker visiting regularly.

What does it mean for your everyday life?

It does eat into ‘quality time’.  There is the constant pressure to have the house tidy when all these people visit.  Some appointments can be early in the morning and its hard work coordinating yourself when you have been up all night trying to settle children back off to sleep.  Scarlett has a sleep condition, effected by her hormones, so she isn’t the best sleeper and 4AM tends to be when she wakes up.

Do you need special equipment?

Not really, a rail to assist her with climbing the stairs and a small table where she eats.

Is their constant medication needed?

Hormone tablets at night to help her sleep.

Are there any side effects?

She can be a little drowsy in the morning once she’s had them, but they are necessary to get some sleep.

Are there any groups or sites you can recommend?

I use many support groups via Facebook.  The Common Sense group is a brilliant parents support network.

Does this affect the rest of your family – if so how?

I can’t really take the two children out together by myself.  Sonny is at an age where he just runs away and Scarlett needs guiding.  So I try to alternate days out with them so that they are alone with me.  Not the most convenient of soluitons.  Scarlett doesn’t play and engage with Sonny as a sighted child would so I suppose he misses out on a playmate.

What is the worst thing about the condition?

Its a shame when a child appreciates something that is asthetically pleasing and Scarlett doesn’t.  Toys etc are all designed to please the eye and Scarlett doesn’t have that.

Is there anything that helps or makes it better?

The fact that Scarlett is such a happy child.  Yes she might not get excited when she see’s a giant sized Iggle Piggle, but she danced and laughed to all the music when we went to see In The Night Garden Live.  She gets so much pleasure from hugs and kisses and music it makes the other things hurt less.

Is there any advice you can give to a family who have been diagnosed with the same condition?

Always look on the bright side.  Scarlett is very musically gifted and I have no doubt that she will go on to do some amazing things in that area, I think if she wasn’t sight impaired that  wouldn’t happen.

Are you fundraising or working with any organisations you would like to tell us about?

victa.org.uk

Is there any other information you would like to give us to explain to mums what this condition is or how it has changed your family’s life?

You learn to adapt and just get on with it.  I try my hardest to remain positive at all times as I feel that outlook will be the best gift I can give to Scarlett.  She will face adversity and she will find things harder than others…. but that will make her stronger and more determined in the long run.

Have you witnessed any prejudice? If so how did you deal with it and what would you like to say to people who don’t know what to say or how to approach you?

People are always unsure of how to handle Scarlett, the great thing is that she’ll always climb onto someone’s knee and give them a hug.  People look at her strangely when she bangs on things when we’re out in public or when they hear me giving her verbal directions.  Its just about understanding that people are different in life and that we’re all just on the same path…. a happy one!

 

We would like to thank Charlotte for sharing her families story with us, if you have any comments on this or would like any further information please let us know below or email us at info@mojomums.co.uk

 

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