It was late evening on Easter Sunday 2012. We had a wonderful afternoon out at the pub with friends, probably our last as a family of three, as ‘Mr Chipper’ was due in 3 weeks time. Our 2nd boy to complete our family. I fell asleep dreaming of the future… an adventure holiday camping in France, kayaking down the Dordogne River with my two boys diving in and out of the water as the sun set….
Lance was born on Easter Monday morning just before midday. He was perfect with a complete head of white blonde hair with a ready made mohican. I remember lying in bed listening to Mike introduce himself to his son and describe him… his button nose, beautiful blue eyes, round face just like Mums. He was perfect. We were happy.
Then it happened. As I was cuddling him he looked at me and whatever he did with his face prompted my head to go “Don’t do that!! It makes you look like you’ve got…” The seed was planted in my head. Down Syndrome. Then like the best Sherlock scene all my senses were heightened.
They didn’t do that check with Dexter.
Why do they keep checking his hands?
That was a ‘look’ from the midwife to the paediatrician.
The midwife’s smile no longer looks as natural.
In slow motion I listen to the paediatrician say “Because it’s Easter Monday and a Bank Holiday I can’t discharge you, I need the Registrar to come check over Lance before you can go home. There’s nothing to worry about. I’m just going to page her to come down. OK?” Then I knew. Everyone left the room and there we were… I was sitting on the bed putting Lance’s very oversized baby grow back on and Mike was standing by the window. At that moment I made the hardest decision of my life. I opened my mouth and said “Sit down Mike and look at Lance, I think he has Down Syndrome”. Mike replied “No… Really?”. Then after what seemed like an eternity of silence he said “Yes, I think you’re right”. My perfect Dordogne holiday imagine shattered like a mirror into a million pieces. One of the happiest days of my life just clouded over. But he was there in front of me… this beautiful, helpless, perfect little boy. I was his Mum.
And then the door opened and the Registrar, Paediatrician and Midwife walked back in.
When they finally said “we think your son has Trisomy 21… some people know it as Down Syndrome” we were prepared and didn’t actually make any reaction; just nodded in agreement. I later found out that this freaked them out.
The next couple of hours and days were a haze of emotions as we adjusted our expectations, defaulted to our new normal and got on with life as a family of four.
Six weeks (and a LOT of routine hospital checks) later we were delighted that Lance hadn’t been born with any of the heart or other major organ problems often associated with Down Syndrome. But soon after the ‘niggle’ started. Mike was the first to comment that his eyes didn’t seem to be focussing on anything. Then at the routine Ophthalmology appointment at nine weeks, it was confirmed that Lance was not ‘fixing and following’ – a milestone normally achieved by week six of a baby’s development. They assured us not to worry as Lance was born three weeks early and this combined with the fact he had Down Syndrome just meant that he was probably slightly slow off the mark. We were told to come back in eight weeks for a follow up.
Every day of that eight weeks we celebrated the joy of having two wonderful sons and settled into family life… at the same time the paranoia set it. Can Lance see this? Was that a fix and follow? Grasping at every little glimmer of hope but no matter how much we willed it to happen, we had to admit that he couldn’t seem to see. The days leading up to his next eye appointment seemed to pass very slowly. And they confirmed what we already knew – yes, he’s not fixing and following. Since his eyes were physically healthy they concluded that he most likely had ‘Delayed Visual Maturation’. Although this is not a common diagnosis it isn’t unusual and, as the title suggests, the expectation is normal vision just slightly later than the norm. We were told to come again in eight weeks! And she even used the phrase “we’ve just got to wait and see what happens”… surely no pun intended.
Needless to say Google was the first point of call when we got home.
Delayed Visual Maturation (DVM) is characterised by an otherwise normal eye exam in an infant that does not fix or follow or otherwise respond to a visual object. In an infant with DVM, the eyes, including the retinas and optic nerves, appear normal and the infant is otherwise neurologically normal. By definition, however, at some point in time, usually by about 5-6 months of age, the infant will start to fix and follow and will then appear as a visually normal infant.
But is Lance ‘neurologically normal’ given that he has Down Syndrome?
It was at this point that we were introduced to PSDS, came along to a Family Morning and became part of what we now know as our ‘extended family’. They were a world of information and answers, of positive stories and beautiful children. Children with Down Syndrome can achieve their full potential with early intervention and the right differentiated education. They are brilliant visual learners… but all the children could see. No one had heard of DVM. No one had faced the challenge of getting a blind child with DS reach their full potential. But they did know someone who might be able to help and gave me the details of Maggie Woodhouse.
Next point of call was to contact Maggie, a Lecturer & Optometrist at Cardiff University who specialises in visual impairment associated with Down Syndrome. She was able to confirm that DVM was in no way connected to having Down Syndrome but, given that she had never experienced this combination before, she wasn’t sure if the fact that Lance had got Down’s would affect the how long his vision would take to mature. Her advice was to get a referral to a Visual Impaired Teacher (i.e. a Teacher who works with the visually impaired) and get stimulating his eyes.
So that’s what I did.
A wonderful woman from Surrey’s Physical & Sensory Support Team came to visit us and taught me how to stimulate his eyes. Twice a day for ten to twenty minutes I did a visual workout on Lance’s eyes. Anyone who came upon us raving with glow sticks under a foil insulation blanket would have probably called social services but whatever it took I was willing to give it a go… because I couldn’t imagine the alternative. Although I am the eternal optimist, every day that went by the elephant in the room just got a little bigger. What if it isn’t DVM and Lance is blind? My heart would sink and eyes would well up… Down Syndrome was easy to accept but blind as well, tough. Family and friends were a great support but every time one of them said “I’m sure he just looked at me” I was getting more and more frustrated. All of Lance’s other senses were maturing as normal so he gave a good impression he could see but I knew if you stripped away the sound, touch and smell there was no reaction from him. A mother knows and I knew.
Weeks passed and soon Lance was five months old. We had acquired black and white books, flashing balls, tinsel pompoms, mirrored blocks and a spinning, LED heart wand in our box of tricks but still nothing. He made no reaction when I crept up to his cot in the morning and put my face right in front of him. Cracks were starting to appear in my optimism.
Then it happened. I had bought an ‘Infant Stimulation Mobile‘ with high contrast, visually stimulating shapes especially for infants with developing eyesight a couple of weeks before and finally got around to putting it up in Lance’s cot. We were doing our normal bedtime routine and I put Lance in the cot whilst I ran his bath. When I came back in to get him he was lying directly under it, hands clasped together looking at it. How did I know he could see it? It was just obvious and when I tapped it gently his eyes followed it. I called Mike up and told him to go into Lance’s room. I didn’t say why as I wanted Mike to see for himself and form his own, unbiased opinion. He came out of the room smiling! We hugged. The collective relief and overwhelming joy both of us were feeling went unspoken. We just knew that everything was going to be ok.
His next eye test confirmed that he was fixing and following – at six months he had finally achieved the six week milestone. Get in there!
He was finally smiling back at me and at the spoon offering him food. He took his time but he got there. And he taught me the importance of staying positive, having patience and maybe, just maybe, made me realise that there are harder things to deal with than Down Syndrome and we should count ourselves very lucky that we have a very healthy, happy boy.
Lance is now almost 4 years old and he is very much achieving his potential. With the help of PSDS, Digbies, Central Surrey Health, Barnettwood Pre-school, Happyminds, Childminder Jane Bull and the support of friends and family, Lance will be starting mainstream school in September. And I am back to day dreaming about that adventure holiday kayaking down the Dordogne with my THREE boys (and before you ask… yes, my family is now very much complete!!!).