DONATE
I want to give the gift of sight to a child

Alexia’s Story

INTRODUCTION

Over the next ten weeks we will be serialising the story of one mother’s experiences as she realised that her newborn son potentially had a life-changing eye condition.

 

Part of vision4children’s remit is to support parents of visually impaired children who are often required to spend a large part of their child’s waking hours stimulating their child’s vision. It is stressed to parents that these stimulation exercises are vitally important, as a child’s brain and sight development only takes place during these early years. In addition Parents are often required to carry out intensive daily care routines which can include drops, lenses and / or patching.

 

All of this can cause massive stress and worry to parents and with little information and support available, they can start to feel vulnerable, isolated and under enormous pressure to give their child the best possible sight and the best possible start in life.

 

We at vision4children feel this story of one family’s journey will highlight the issues facing parents and will encourage and give hope to other families in similar situations.

 

WEEK ONE

WEDNESDAY 4TH APRIL 2012
Our son M was born by caesarean section at 38 weeks weighing 5lb 8oz. He was a healthy and beautiful brother for my two other daughters, aged 2 years 10 months, and aged 16 months, and the joy of our lives. We did not anticipate the anxious weeks and months that were around the corner. This is our story……..

 

THURSDAY 7TH JUNE 2012

I left the café where I’d been having coffee with some other mothers and drove to the Doctor’s Surgery in our local village. My son, M was due a follow up appointment with our GP because at his six week check he could not track a moving object with his eyes. Three weeks later, as far as I could tell he still wasn’t able to ‘fix and follow’. The issue had been playing on my mind a bit, but I hadn’t worried too much, he was still so young and seemed very normal in every other way.

 

At our appointment our GP couldn’t get M to focus on anything at all. I realized I’d been secretly hoping that because she was a Doctor, she might be able to get him to perform where I’d failed. With what seemed to me alarming swiftness, she referred him to see a Paediatric Ophthalmologist. I was shocked that she had taken his problem so seriously and I asked what the Ophthalmologist would be looking for. My GP explained they would check the workings of his eyes (which seemed an obvious line of enquiry to me), and also the visual pathways between his eyes and his brain. This latter piece of information ‘knocked me for six’, I began to imagine all sorts of horrific scenarios’ involving brain damage. I have no medical training and in my mind issues with eyes can be helped with glasses and perhaps surgery; but brain issues, there are no quick fixes for that…..my imagination began to run riot about what the implications could be for my precious son.

 

I held it together in the surgery but as soon as I got back into my car I began sobbing uncontrollably. This was a total bolt from the blue. I’d worried continuously throughout my pregnancy that my baby would be born well and safely, and when he was, I’d relaxed. And now this bombshell….

 

I got home and phoned my husband, he did his best to reassure me, saying we hadn’t been told anything bad yet, but I could tell that he was shocked too.

 

Once home I pulled myself together and decided that as M’s mother it was my duty to ensure that I did absolutely everything within my power to get him the best help out there. I spent the rest of the afternoon on the internet and the phone. I wanted to get M seen by a specialist as soon as possible. It was desperately frustrating as everytime I called an Ophthalmologist I got through to an answer phone. Eventually I managed to secure an appointment with an Ophthalmologist at the Portland Hospital in London for Saturday, only two days away. Her secretary was the only ‘person’ that answered the phone, and by coincidence it seems that she had an outstanding reputation. I felt so grateful that she had agreed to see us at such short notice.

 

That evening I tried to remain calm but I was scared about what the future held for my beautiful baby boy, and also the impact it might have on the rest of our family.

 

WEEK 2

FRIDAY 8TH JUNE 2012
It wasn’t a Nursery day for my girls today and so I had a day at home looking after all three of my children. I spent every spare moment I could waving black and white books at M whilst he lay on his back on his play mat. And suddenly he seemed to lock onto one of the pictures and follow it a few times before losing interest. A huge flood of relief washed over me, so he could see! But then he wouldn’t do it again, and I began to wonder if it was just a coincidence that his head was moving that way.

 

SATURDAY 9TH JUNE 2012

We arrived at the Portland Hospital in London. G, my husband, was with M and I because we’d been able to leave our two daughters at home with a babysitter. I was glad we’d done it this way, it was great to have his support, and also to be able to have a discussion with him afterwards about exactly what the Doctor had said.

 

First of all an Orthoptist saw us, I suspect to establish whether there was actually a problem. She tried for a long time with lots of little toys to get M to fix and follow, but he didn’t. I was willing her to say she’d got some evidence of visual attention but she didn’t, as the examination went on and still nothing, I began to feel sicker and sicker. This was a pretty dark moment for my husband too. So there was a problem with our precious baby boy.

 

Then we went in to see the Ophthalmologist. She was great and after examining his eyes and finding no abnormalities she said she suspected he was suffering from Delayed Visual Maturation (DVM). She explained that it was a rare condition in infants where the visual system was slow to switch on. Eventually it did, and by six months the problem had generally resolved itself. It all sounded very odd to me, she admitted it was. I wanted to know if it didn’t turn out to be DVM what else it could be. She said she didn’t want to discuss this now. I understand why she felt this unnecessary at this stage, but I wanted to know what we might be facing, and also what the worst case scenario might be. She wanted M to undergo some more examinations and tests to ensure there weren’t any problems that we were missing; these would be arranged for the following week.

 

My husband and I came away from the appointment feeling OK, no bombshell had been dropped. The Ophthalmologist had done a ‘swing test’ on M, his eyes had followed as she swung him, which meant it was unlikely that he was blind. She had also examined his eyes and had found no obvious problems with them. So we hoped that it was just that his visual system was slow in switching on.

 

WEEK 3

SUNDAY 10TH JUNE 2012
Today was probably my darkest day so far in this whole journey. I’d been OK yesterday but for some reason today I looked at the situation in a whole different way. Whether it was DVM or not, my precious little boy had been diagnosed by Doctors with a serious problem with his eyesight and I was utterly devasted and distraught about this.

 

I was desperate for information about Delayed Visual Maturation and also when a child’s vision did switch on whether there were any other further complications to be expected. I spent every spare moment today infront of my computer. There was very little information out there, and what I could find filled me with dread and hurt me right to my core. In the few studies that had been done on DVM children often went on to have developmental delays in movement and speech, there also seemed to be associations with Dyslexia, Epilepsy, Cerebral Palsy and Autism. This made sense to me, if there were problems with the visual pathways in M’s brain there could easily be other problems in there. My husband wasn’t interested in reading any of the research I’d found, he said it was done years ago, that the sample sizes were very small, that I shouldn’t draw my own conclusions, and that we just needed to listen to our Doctors. I couldn’t help myself though.

 

The thing that also panicked me was these papers kept using the word ‘blind’, as bizarre as it might sound until that point I hadn’t looked at it like that, suddenly came the realisation that my son couldn’t see and was therefore blind. I felt in shock.

 

TUESDAY 12TH JUNE 2012

And back to London to Great Ormond Street for some tests. A Visual Evoked Potential (VEP) test is undertaken to ensure that the early visual pathways are intact and functioning and an Electroretinogram (ERG), to assess retinal function. Wires and sensor pads were put all over M’s face and head, I was so upset, he looked like some little laboratory animal, but the staff were amazing, so friendly, and this was clearly so normal for them they really put us at our ease. M behaved really well and they were able to get the tests done quickly, they didn’t want to give too much away but indicated that all the results were normal, phew!

 

We then went to see a Paediatric Neurologist; her job was to asses M to see if she could identify any development delays or other problems we had missed. She was a wonderful lady, very animated and a bit bonkers, and she had M fixing and following her face and gurgling away no problem. In her opinion everything including M’s visions was fine, she said perhaps M had been delayed but he was where he should be now! Phew!

 

WEDNESDAY 13TH JUNE 2012

Back to see our Ophthalmologist at The Portland Hospital who had the results from VEP and ERG and said they were largely normal. How did she mean ‘largely’, I immediately seized on this hint of a negative. But she assured me no, everything was fine and as it should be. She did some more visual tests on M, which he didn’t respond to, and so because the VEP and ERG had come back fine she diagnosed Delayed Visual Maturation. She explained we faced a waiting game, but that she fully expected his vision to eventually kick in. She explained this can happen in one of two ways – it can develop slowly or switch on overnight like a light switch being turned on.

 

I asked our Doctor how many cases like this she saw a year, the answer was; DVM with no other associated problems was incredibly rare, she’d only ever seen a few cases, this filled me with terror, but then I thought it does have to be someone so why not my little boy.

 

WEEK 4

SUNDAY 16TH JUNE 2012
Every morning my husband holds M up and tried to get him to focus on his face. He’s wondering if the ‘light switch’ has come on overnight! I think he finds it a very intriguing concept! My gut feeling is that the improvement will be slower and more gradual – but you never know.

 

MONDAY 17TH JUNE 2012

I found a Facebook page today for Delayed Visual Maturation. Being able to share other people’s experiences was massively helpful. I was up into the early hours of the morning reading every single post and every reply. Rather than ancient research papers these were parents currently living the nightmare of having babies with suspected DVM. A lot of the posts weren’t reassuring, seizures, low tone, development delays etc etc, all seemed to come hand in hand with DVM. But there were also some happy endings too, status updates written by parents whose children’s sight had switched on and were normal, happy and thriving. These stories gave me hope. I didn’t post anything, I really can’t explain why, perhaps it’s because doing so would have made M’s problems real. Similarly I hadn’t told many friends about our issues with M’s eyes, I wanted to wait and see what and if the problem was before I did. https://www.facebook.com/groups/315163741694/

 

TUESDAY 18TH JUNE 2012

One of the suggestions on the DVM Facebook page was to get a foot file, the ones that are shaped like a paddle, and stick onto the end a piece of paper with black and white patterns drawn on. I went into town today and bought four foot files and spent the afternoon with my daughters making them. I then put one in each room of the house.

 

THURSDAY 20TH JUNE 2012

The foot files are not provoking the desired response from M, I am pretty gutted about this as on the Facebook pages people raved about how effective they were in getting their babies to start ‘fixing and following’. But I have to laugh as well, G, my eighteen month old has learnt where all the foot files are kept and now stands over M moving them back and forth, I am not sure she knows what she is looking for but it’s very amusing to see her doing it.

 

WEEK 5

THURSDAY 28TH JUNE 2012

Through some family connections we’d been put in touch with Mr Chandna, a Consultant Ophthalmologist in the Department of Pediatric Ophthalmology at Alder Hey Children’s Hospital. Even though we were happy with our Doctor in London we thought we should go and get a second opinion. It was only an hour’s drive away from our home, a lot nearer than London.

 

Mr C (as he is known by all) was just wonderful. He did a very thorough assessment of M and also diagnosed suspected DVM Type 1 (DVM with no other complications). He said he’d like to repeat the VEP and ERG just to be to able to examine the results himself, this was done and they all came back normal.

 

Mr C took a long time to explain to my husband and I how the whole visual system works and both the eyes and brains role in this. He stressed several times that he would be totally honest with us, and that he believed in not holding back anything from parents. I was very grateful for this. I wanted to know all the facts, rosy or not.

 

MONDAY 2ND & TUESDAY 3RD JULY 2012

I was in London for a couple of days, catching up with my sister and some friends, and hitting the shops! I’d left my other two daughters back home but because I was still breast feeding M I had him with me. Infact even if I hadn’t have been, I’d still have taken him with me. I can’t bear anyone else looking after him, or doing things with him, I want to spend every minute I can with him, and do everything for him. I’ve had to give myself a talking to a few times as I have two other very young children and they need me too.

 

WEDNESDAY 4TH & THURSDAY 5TH JULY 2012

I’ve been really low these past two days. Constantly I am putting my face in front of M’s trying to get some reaction from him, but he just stares through me. In London I bought every black and white baby book I could find, desperate to get something that might provoke a fix and follow from him, but nothing.

 

Eventually I phoned Mr C. M is 3 months now and we’d hoped for some sort of improvement by this stage. I suddenly wanted answers. I asked if M should have an MRI. Mr C suggested that we book one in for the end of next month, then he’d be 5 months old and if no improvements had been made more investigations definitely needed to be undertaken. He did say that if I wanted an MRI done earlier then he would. He explained though because M was so young we’d need to give him a general anaesthetic in order to carry out the procedure. I decided to wait, it clearly wasn’t in M’s best interests to do the MRI now, and I’d just have to wait for my answers.

 

I felt so much better after speaking to Mr C, just being able to ‘chew the fat’ with someone who understood everything instead of me dreaming up scenario’s in my mind made such a difference.

 

WEEK 6

FRIDAY 6TH JULY 2012
I had some sound advice from a good friend today – to stop worrying and to just enjoy my baby boy – whether he could see or not. She said whilst I was busy Googling his precious baby days were flying by and I’d never get them back. Wise words.

With this in mind I booked flights for M and I to go on holiday for a few days. My husband begged me not to go, he thought left alone I’d spend endless hours trying to get M to ‘fix and follow’ and sink deeper and deeper into a depression when he didn’t. But that’s not how I saw it, our home is incredibly hectic and I just wanted a few days totally alone with my baby boy to enjoy him for being him, a kind of babymoon I suppose!

 

TUESDAY 10TH JULY 2012

I am on my way back home after a blissful few days. Apart from an exploding nappy on the flight on the way out, it’s been a heavenly break. Removed from every day life in a warm and relaxed environment I just enjoyed my son. We went swimming, out for lunch, on walks, lay on play mats in the shade, and had so much fun. And as I was pushing him around the supermarket in his car seat he smiled right at me – I’ll remember the euphoric feeling it gave me forever!

 

TUESDAY 17TH JULY 2012

The girls were at Nursery all day and so it was a quiet day at home for M and I. I look forward to Tuesday’s so much, with the two toddlers out of the house it’s so calm! And I get to have a whole day to just enjoy my precious little boy. I played with him all morning and we had such a good time. Whilst he slept over lunch I sat down and reflected how much happiness he has brought to my life. Worry too, but he gives me so much joy, and it just gets better every day.

 

WEDNESDAY 18TH JULY 2012

Whilst my children slept this lunchtime I couldn’t help myself spending some more time researching DVM online. And I came across the idea of using App’s on an IPAD to help stimulate baby’s vision. Below is a list of the ones I found.

 

1. Sparkabilities Babies 1 HD for iPad – Bottle Rocket
2. Tap-n-See Zoo – Little Bear Sees
3. BrightStart Baby: A Bright Start for Smart Babies – Eieio Software
4. Baby Rattle Toy – SelenaSoft, Inc.
5. Peekaboo: Ladybird Baby Touch – Penguin Books
6. iLoveFireworks – Fireworks Games
7. Hatch! Plus – Phodder
8. Baby Screen – Planet Sloth
9. ShapeShifter HD – Transform Games
10. Bloom HD – Opal Limited
11. Infant Visual Stimulation
12. Stimulator
13. Early Infant Stimulation for your Infant
14. Baby Bright

 

WEEK 7

FRIDAY 20TH JULY 2012
M is smiling now all the time. I wake up in the morning and am greeted with that wonderful beam I remember so well from my other two daughters. He responds well to animated facial expressions and fixes and follows some of the time. We go back to see Mr C next week and whilst there hasn’t been that light switch moment there has definitely been a big improvement in M’s sight.

 

TUESDAY 24TH JULY 2012

I’ve spent the last week lying M on his play mat facing my IPAD, seeing how he responds to different Apps I bought. His favourite is definitely Infant Visual Stimulation. Large black, white and red images flash up every few seconds whilst the most wonderfully relaxing classical music plays. He really seems to watch it.

 

THURSDAY 26TH JULY 2012

We went back to Alder Hey to see Mc C today. I felt really confident about our appointment and just hoped that M would perform as well for his Doctor as he now does for us! He did, he fixed and followed, recognised people walking in and out of the room and responded well to Mr C’s tests. Deep down I think I’d been hoping I’d be told there was no longer a problem, but Mr C said although he was improving for his age he was still significantly behind where he should be visually. We saw a Neurologist too who assessed M and thought that other than his visual problems he was developing completely normally. So it’s all good. And as my husband keeps reminding me we haven’t been told anything bad. Mr C wants to see M again in a month and will consider doing an MRI then to enable him to actually see the visual pathways inside his brain.

The Consultant Neurologist we saw was a really fantastic chap, I kept thinking how fresh faced he looked! I came away in awe of that fact that there are people out there achieving so much so young, and dedicating their lives to helping sick children, to really making a difference in the world. It made me feel kind of ashamed of my History degree!

 

MONDAY 30TH JULY 2012

I have become obsessed with observing other babies a similar age to M. In the supermarket, in café’s, at baby classes, I am constantly watching them to try and decide how far behind his peers M is. At the hospital yesterday I saw a baby grab a toy that was dangling from its pram, I immediately found myself asking its Dad how old the baby was. Poor M, am I being a pushy Mother?!

 

WEEK 8

SATURDAY 4TH AUGUST 2012
That Infant Visual Stimulation App is worth its ‘weight in gold’. M loves it and it definitely has really helped in grabbing his attention and helping him to focus and follow on images.

 

MONDAY 6TH AUGUST 2012

We are on holiday at the moment and it’s very hot, sunny and bright. Whenever I take M outside to play his vision seems markedly worse than it is inside. Once I’d made a definite connection about these two things I contacted Mr C in a bit of a panic, thinking it may be significant in trying to diagnose M’s problems. Mr C didn’t seem too concerned. He explained M is still very young and so will still be sensitive to sunlight especially because his eyes are blue.

 

FRIDAY 10TH AUGUST 2012

More Internet research today and I found a website with some great ideas for visually stimulating babies
http://www.littlebearsees.org

 

WEDNESDAY 15TH AUGUST 2012

M is definitely coming on. My husband and I spent lunch discussing it. We are with M the whole time and so its hard to keep track of progress but we decided that he would now ‘fix and follow’ not all the time but a lot of the time. He laughs and giggles (which never fail to melt my heart) and definitely enjoys being part of family life.

 

WEEK 9

WEDNESDAY 29TH AUGUST 2012
We saw Mr C at Alder Hey again. He saw a big difference in M noting that he was now alert and curious about his visual surroundings. He did all sorts of test and assessments on him, some of these he hadn’t even attempted before – so I knew he must have been improving. He said he was still visually a couple of months behind where he should be but that he expected these responses to continue improving. M is still showing no signs of visually directed reaching, that is then one thing that still really gets to me, that when I put him on his play mat he just lies there, I want him to grab and party! Mr C deferred his MRI scan and will review him again mid October.

 

After our appointment with Mr C we went to the office of a charity he is setting up, vision4children. It is an international charity focused on tackling childhood blindness and visual impairment. We hope we are going to have a good outcome with M, but it’s made childhood blindness very real and unimaginably terrifying to me, I offered to help in any way I might be able.

 

THURSDAY 30TH AUGUST 2012

This morning M definitely grabbed a rattle on his play mat – phew! Something so small but it meant so much to me. The upside of all this worrying is I get so much pleasure from each milestone. He lay examining himself in the mirror too – so normal!

 

MONDAY 3RD SEPTEMBER 2012

I put M in his bouncy chair and placed him infront of the TV in our Sitting Room. I put on a Baby Einstein DVD. My two daughters used to be mad for it, so much so that we’d call it the Electronic Babysitter! They’d sit and watch it on repeat for as long a period of time as we decided responsible parenting should allow! I’d tried getting M to watch it when he was 3 months but he gave no response to it. But today he was kicking his legs and squealing in delight at it. So normal and I felt so reassured.

 

WEEK 10

THURSDAY 5TH SEPTEMBER 2012
Passing M’s chair I grabbed his rattle and waved it infront of his face – he every so slowly stretched out his hand and took it from me – I felt as if my little boy had walked on the moon!

 

TUESDAY 25TH SEPTEMBER 2012

I put M down on his play mat whilst I showered and dressed. I kept popping out of the bathroom to look at him, I was so desperate for him to be batting and grabbing the brightly coloured toys above him, but he just kept flipping from his back to his tummy and then lay there quietly sucking his thumb. I began to get really upset, why wouldn’t he play with his toys? Or am I being too hard on him?! Am I being that pushy Mother again!

 

SUNDAY 30TH SEPTEMBER 2012

My Dad came round for brunch, he hadn’t seen M for a couple of weeks. He reckons he can see a big improvement in the way he interacts and feels that he is definitely more aware of his environment. He declared that there was now nothing wrong with him – oh how I hope so.

 

WEDNESDAY 3RD OCTOBER 2012

I’ve just been on the phone to my daughter’s Nursery as I am switching their sessions they attend around a bit. For the first time I found myself thinking that I better get M’s name down for next year. I’d never let myself do this before, I was always scared he’d need some sort of special help, but I am obviously beginning to feel quietly confident that his problems are resolving themselves.

 

THURSDAY 4TH OCTOBER 2012

For the first time I put M in the swing in our garden. He just sat there looking down and didn’t respond at all. He barely seemed to notice where he was. That so familiar sickening feeling about there being a problem with him began to creep back. But bathing him this evening he was splashing for England and was all smiles and giggles, maybe the outside swing just didn’t impress him!

 

WEDNESDAY 10TH OCTOBER 2012

Today M seems to have come on in leaps and bounds, it’s as if everything has clicked into place. He’s been grabbing rattles and examining textures on his play mat’s. He’s learnt how to bounce in his bouncer and has been spinning one of the toys on it. I am so happy! And he has sat up! Albeit with his legs very wide apart and his back leaning forward quite a lot – but it was still sitting up!

 

SATURDAY 13TH OCTOBER 2012

We were in London this weekend and I took M to Peckham to meet his Godmother to be, Jane. She loved him and he spent the whole time she was holding him trying to eat her nose and her chin. Evidence to me that he can see very clearly!

 

WEDNESDAY 17TH OCTOBER 2012

Today we were at Alder Hey again. We were due to see Mr C, M’s Ophthalmologist and Dr Kumar, his Neurologist. I felt there was a lot riding on today’s appointment. DVM is supposed to have resolved itself by six months. M is six and a half months now so if the Doctors still think there are still some issues with his vision then I am guessing it can’t be DVM. I assume then they would then have to do further investigations as to what might be causing his problems. MRI’s, genetic testing – these were all things I’d read about and found scary.

 

Driving along the motorway to the hospital a tight knot of anticipation lay in my stomach. My husband was very relaxed saying ‘he’s fine, there is nothing wrong with him now’, I was inclined to agree, but couldn’t ‘count my chickens’ until the Doctor’s had told me that.

 

First M saw his Neurologist who assessed him and thought he was doing everything developmentally that a baby of his age should be. Then we went into see Mr C. He remarked that he was a very different baby to last time he saw him. He thought he had made good progress with his vision and said that he could not really detect a difference between him and a ‘normal’ baby of his age. He noted that M now has excellent fixation and following with good visually directed reaching and follows and pays attention to targets in his far out peripheral visual field, which is much better than the first time he saw him. The rest of his eye examination was normal. Arvind discussed in detail with us the pattern of Delayed Visual Maturation that M has had and suggested that now there was very little, if any, cause for concern. He did say that a child’s Higher Vision – recognizing faces in crowds, following moving objects when stationary etc etc doesn’t develop for another few years and there could be problems with this. He discussed some alarmingly scary conditions that some adults suffer from when their higher visions doesn’t work, that familiar feeling of dread spread through me, but then I made myself focus on the fact that we had been told now he was fine and this was only a remote possibility. Driving back in the car I decided anything could go wrong with any of my children in the future, or myself or my husband, but for now everyone was fine and had a clean bill of health, and that was cause for celebration.

 

19h30 – all three children are in bed, my husband and I cracked open a bottle of pink Moet and toasted the fact that the Doctors had told us M was absolutely fine. He will still be observed carefully to ensure that there is nothing they are missing and to check his future development but we aren’t due back at Alder Hey Hospital for six months.

 

SATURDAY 20TH OCTOBER 2012

My husband was outside building some flat packed ride on toys I’d bought for the girls. I needed to do some jobs inside and so took M out and sat him in his buggy to watch what was going on. He stared blankly ahead of him, not focusing on anything, even when I knelt down right in front of him and sang to him he wasn’t interested. It was just like he used to be, and I’ve noticed that this keeps happening when I take him outside. It must be something to do with the amount of light and space there is outdoors, and maybe it’s harder for him to process stuff. I began to panic a bit and tried desperately to get him to engage, he wouldn’t, but then I took myself off inside and made myself focus on the emails I was sending about organizing his Christening.

 

SUNDAY 21ST OCTOBER 2012

On a high today and I suddenly feel as if a massive weight has been lifted from me. I have three beautiful, healthy and happy children and I am just going to enjoy them and life.