Archives for the month of: January, 2015

When I published that last blog post, I had a brief chat with someone on Twitter about how I’d looked back on those early days with the thought “how the hell did we cope?” And of course we did, but it wasn’t like a conscious process, we just went with what was thrown at us.

Joff’s eyes are microphthalmic, which means his eyeballs are smaller than usual, he also had non-working pinpoint pupils and a few months on, had more surgery to widen his pupils permanently to let as much light in as possible. He also has constant pendulum nystagmus, a side-to-side flickering movement, which lenses help with a bit.

So these days when I look at a new-born’s eyes, I think, how did we cope taking Joff’s lenses in and out? Our first appointment to do with his lenses was in the infamous Eye Infirmary in Glasgow, just off Sauchiehall Street. Our experience over the years has taught us that eye clinics are crowded, difficult, noisy environments, where the appointments run over time massively. The lady we were seeing was not very empathetic to us. She told us we could either prise the lens out by trying to use the lower eyelid to catch the bottom edge of the lens or use a wee rubber device that acted as a wee sucker to pull the lens out. Both ways seemed horrible and we didn’t have any success in the clinic. It was a fraught appointment and didn’t fill us with any confidence in ourselves. A 300 mile drive to feel like utter crap in helping our wee baby.

Luckily, a new-born’s eyes don’t produce that much protein in their tears, so we could safely wait two weeks between getting the lenses taken out and cleaned. We decided to transfer Joff’s eye care to Aberdeen, much closer in mileage, but not in travel time on the busy but rural A96. We’d troop over for a 10-15 minute appointment, spend an hour and a half travelling each way and an hour and a half waiting in the hospital, not easy with a new-born and a toddler. Our doctor there was massively nice to us, he made us feel that we were doing everything we could to promote Joff’s vision, including wrapping tinsel round the handle of his car seat because it was so sparkly and eye-catching. So what if it was October?

One time, after another long and exhausting day visiting the hospital, Mr Effie took the wee man out his car seat and disappeared upstairs with him. He said, “don’t come upstairs and try to ignore the crying”. He wrapped Joff tightly in a shawl, laid him on our bed and knelt over him then proceeded to do all he could to work out how to remove Joff’s lenses himself. The wean gret and gret for ages, it was bloody heartbreaking to listen to, but after about 20 minutes Mr Effie yelled, “I did it!” And thus began our wee double act….Mr Effie would take the lenses out, clean them, and when they were ready, I’d put them back in. Taking a lens out (our way) feels a lot like pulling the skin of your eyelid forward (with added tears). As long as your hands are clean, your nails are short, and you avoid touching the coloured part of the eye, it’s quite a straightforward thing. After a short time, we both learned to take them in and out with ease.

So the hospital continued to check Joff’s eyes and clean the lenses fortnightly, we were taking them out ourselves weekly. When the cleaning regime was moved to weekly, we were already cleaning them daily. We knew that if Joff developed an eye infection we could take the lenses out immediately ourselves, we didn’t need to traipse over to Aberdeen, in the absence of having anyone local who could deal with them. It felt good to have that control and the wee man got on great with the whole thing. By the time Joff was 6 months old, we were doing occasional mentoring to parents of other young children diagnosed with a cataract and fitted with a lens. I like to think we gave a lot of confidence to these parents, and wished we’d had the same.

By the time Joff was about 18 months old, a paediatric ward had opened up locally with a great eye doctor so we didn’t have to travel as far or as often. This doctor registered Joff as blind, though blind doesn’t necessarily mean you can see “nothing”, but it was a recognition that Joff will have significant visual problems all of his life. It comes back to that old chestnut of finding it hard to test someone’s vision when they also have profound problems with communication. He sees and is completely addicted to sunshine and bright lights. He has a fantastic sense of internal direction in familiar surroundings, he doesn’t walk arms outstretched to navigate indoors. If he’s eating a favourite handful of dried fruit placed on a patterned background, he won’t find them all by sight. He doesn’t appear to see well in the lower part of his field of vision and favours his left to his right eye. I don’t know what colours he sees, if his vision is doubled or blurred. But I know his sight would be a lot worse if it weren’t for his miraculous lenses.

And with hardly a mishap or infection, Joff wore his lenses successfully until he was about 12, when he learned to poke them out his eye himself and eat them.

Joff’s first op. Hah!

Whilst that phrase has all the cutesy charm of a milestone, this was a pretty tough time for us.

How they remove cataracts in an operation is to make a tiny cut through the front of the eyeball next to the iris, the coloured part of the eyeball. The surgeon inserts a tiny probe-cum-hoover, for want of a simple term, which both breaks up the semi solid lens in a mashup kind of way and then they remove it from the capsule that holds it in place in the eyeball. Sometimes the capsule itself is left behind and you can see ghostly whiteness reminiscent of a cataract, but it is not generally a big problem.

We didn’t realise that having both cataracts out in a single op and in one so young was highly unusual at the time. We later found out it was an actual record in Scotland. We watched tiny Joff being wheeled into theatre – I don’t actually recall the anaesthesia used that first time, which is funny ‘cos there have been some real doozies over the years – I’m guessing it was a mask – and we were told that we should return in an hour or so. We went out for some fresh air, fully intending to take advantage of the “break”. However, we didn’t last very long being footloose and fancy free and went back to the hospital to wait in the parent’s room. Mr Effie’s mum and dad turned up and the four of us made small talk and drank some vending tea. I admired a poster in the room “Children learn what they live”. And like all the horrible times in your life, the time just crawled by. Mr Effie and I began to get stir crazy and asked at the desk a few times if Joff was out of theatre – nope, not yet – but all was going well.

After a while Mr Effie and I resorted to rolling up an empty carrier bag into a makeshift ball and used it to play hand tennis with. It did get terribly silly. Two grown adults farting about in a hospital. I suppose it was symptomatic of the growing panic we were both hiding. And symbolically, kind of representative of how we’ve coped over the years. Mostly stoically, but equally, cheery with it.

Two hours went by. Surely there must be some word by now? We went back and asked again. Oh yes, said the nurse, he’s been in recovery for the past half hour – did no-one tell you?

Aww… see that wee sowel? Barely 8lb dripping wet and two white cotton eye patches on.

They said they would fit him with soft contact lenses once the stitches settled down in about a week’s time. We didn’t know at the time, but many people having cataracts removed have a lens implant done at the same time, but this wasn’t suggested to us as an option. However, it would possibly have caused glaucoma, a kind of side effect in Lowe, so that was an option best avoided. So the contact lenses Joff was being offered had to have a large prescription; by contrast if you wore the equivalent prescription in spectacles the lenses would be stupidly thick and heavy to wear and more importantly, distort the actual view of the world with the Mr Magoo magnification.

I thought at the time, and I still do, it’s utterly wonderful that we live in a time when Joff had been diagnosed so quickly, and had the technology available to be given contact lenses with a prescription of +36.

A two-week old baby with contact lenses, did you ever hear the likes?

When, weeks later, we finally made it back home from hospital as a family, my father in law presented us with the poster from the waiting room. He’d gone back to the ward, cadged it from the nurses, then got it framed for us.

Lives in our hallway to this very day.

Children Learn What They Live

If a child lives with criticism, she learns to condemn.

If a child lives with hostility, he learns to fight.

If a child lives with ridicule, she learns to be shy.

If a child lives with shame, he learns to feel guilt.

If a child lives with tolerance,  she learns to be patient.

If a child lives with encouragement, he learns confidence.

If a child lives with praise, she learns to appreciate.

If a child lives with fairness, he learns justice.

If a child lives with security, she learns to have faith.

If a child lives with approval, he learns to like himself.

If a child lives with acceptance and friendship, he or she learns to find love in the world.

So the Bold Joff was here and the docs looked him over in the delivery room. He had good Agpar scores so there was nothing immediately obviously amiss. I needed a few stitches after and as the doctor attended to that, he told us a funny story.

Just a room or two along the corridor, there was a lady who had elected to give birth on the 8th as her husband was a submariner at Faslane and was due to go on extended tour. This way he could see the baby being born and spend a day or two with his new family before his tour.

Except he never turned up.

The doctor was an older gentleman and a veteran obstetrician of the Queen Mother’s. As you can imagine, the kind of language he must have heard over the years from labouring Glaswegian women wouldn’t have been for the faint of heart. The language coming out of that particular abandoned woman was the worst the doctor could remember and said he didn’t care for the husband’s chances once he turned up. It only occurred to me quite recently that that wee baby is the exact same age as Joff, all being equal. I wonder how the reunion went?

So we went back to the main ward, Mr Effie and I feeling a bit sorry for the livid bruising around his face from the forceps, such a bonny chubby baby he was! I tried breastfeeding him, but he wouldn’t latch on. I wasn’t entirely surprised as I hadn’t had a great deal of success with breastfeeding Miss Effie Senior and put this down to my own lack of confidence and technique.

He slept on and on, not waking for a feed. Nurse said to give him a bath and then try feeding him again. When I was bathing him another doctor came to do his first checks, count fingers, toes and check his hips, reflexes etc. She shone a penlight in his eyes and she seemed dissatisfied with the result. She did it a few times. I told her he hadn’t fed since birth and seemed lethargic. He had a raised temperature – probably from swallowing meconium during labour. So they decided to send him up to the special care ward to fit a NG tube to feed him and I was given a breast pump to express milk for him.

It was so strange to see him on that special care ward. All the wee babies we could see there were preemie; tiny wee scraps of life whose hand knitted hats and cardigans dwarfed their tiny heads and bodies, wires and tubes all around to support their start to life. And here was Joff, all 8lb 4oz of him, filling the incubator-style cots and looking like a whale in comparison. Most people walking down the corridor did a double take looking at Joff as much as I was looking at all the wee tiny babies.

Because of the range of problems of these preemie babies, there were consultants aplenty on the floor, including an ophthalmologist who came into our room to re-check Joff’s eyes. The test the doctor did downstairs with the penlight was to look for the red reflex. This is a quick test to check the retina…you’ll likely have seen it yourself as the “red-eye” you get on some photographs. But this reflex was completely absent in Joff because his cataracts were clouding his lenses and stopping light getting into the retina.

More prodding and poking and then the pronouncement, “he has cataracts and low muscle tone”. If you held him up at the shoulders and bum, his head and limbs all hung down helplessly like a little rag doll. So the doctor proposed to operate on the cataracts soon and a physiotherapist was sent in to assess and begin exercises. Mrs Frietag. One of many people who’ve supported Team Fisher.

We didn’t feel too despondent. Yes, there was a problem but it was being addressed, it had a solution. We put a wee picture of a duck up against his cot wall, something for him to “look at”. But that began to get to me, my wee baby not being able to see things. We asked the registrar how Joff’s eyesight would be after the operation. I distinctly remember asking “Will he be able to read?” because I am a voracious reader, I couldn’t imagine life without text. He replied “Oh yes, he’ll maybe need a low vision aid, but he’ll do fine”. With hindsight, the doctor should have said, let’s wait and see, as the real extent of his problems made themselves known.

The operation was scheduled for when he was a week old.

More about that next time….