First serious illness

We have a son with Down Syndrome. There are a lot of things to get my head around. ‘Special needs’ is aptly named. I’m figuring out what Jacob’s special needs will be. Some we can anticipate, like physical development, but even within that category, some are harder to fathom.

There are a lot of tests in these early days. Hearing, eyesight, muscular development… Heart issues are top of the list, and we get a lucky break with that one. Tens of times his heart is listened to, and finally we have an echocardiogram in Crumlin in February to determine that his ticker is tickety boo, thank you God. But there are always another dozen things to think about, so the high quickly gives way to ‘What’s next on the list?’ The list gets forgotten pretty sharpish on the Friday before Christmas however.

But rewind. Tuesday Dec 18th, 2008. He’s just a month old. We’re expecting this to be a strange sort of Christmas anyway. A new person has just arrived at Hotel Us, booking in for a long stay, and he’s got a lot of unique requirements. The house is upside down. We’re not feeling very Christmassy. Just in need of a shower most of the time, and tired all of the time. And then he contracts bronchiolitis. The maternity hospital confirms our own diagnosis. Ok. No biggie. Andrew, who’s three, had bronchiolitis, so how bad can it be for Jacob?

As the days pass he’s listless. By Friday, December 21st, Dee is worried. I come home early. He’s off his food and very pale, sleeping all the time. That evening at about nine I manage to get two ounces of formula into him. He seems to respond, is a little livelier. I’m feeling very pleased with myself (I shouldn’t be) and off I go to walk the dog. By ten o’clock I’m back. One look at Dee and I see naked terror in her eyes. Jacob is white and limp. His breathing has slowed dramatically. We rush to Temple Street Children’s Hospital. It takes six minutes. A swarm of nurses and doctors is onto him at once. He’s put on oxygen. Blood is taken. X rays are taken. We stand in shock. Time might be standing still now, or it might have speeded up dramatically. I cannot say. I’m standing outside it, looking at people dressed in white, strangers on whom our son’s life suddenly depends. I did not expect to be here, but ‘special needs’ is a very big phrase. The doctors look quite serious, yet incredibly sympathetic. It’s the sympathetic bit that scares me most, frankly. A dam bursts inside and I fall apart for a ten minute spell. Dee and I hold each other, feeling useless. But after what feels like a year spent in a vacuum, Jacob starts to stabilise. He’ll be kept in. He has had ‘a near miss,’ we are told. Dee later reads ‘significant life threatening event’ on his chart. Two phrases which I will not soon forget.

After ten days our Jacob comes home, healthy and ready to resume his position as most popular new member of the household. Christmas 2007 does indeed end up being somewhat different, but that’s another chapter.

Two final items here.

The first is the lesson I learned. Jacob’s Down Syndrome, and the fact that he was born over two weeks early, meant that his lungs were not quite as robust as another kid’s might be. It left him more receptive to bronchiolitis. It also made it much harder for him to fight it the way his brother Andrew had done two years earlier. Furthermore, his energy levels were woefully depleted. My thinking was ‘We must get some food into him,’ and I was delighted to get two ounces of formula into him on the night he was hospitalised. Wrong thinking. The energy he needed to ingest and try to digest that formula was energy he badly needed for breathing. It was already super-tough for him thanks to the bronchiolitis, and I made it worse. Everybody lived, but I still feel guilty about that.

Lastly some huge thank yous. To all of the wonderful staff at the kids’ hospital. Amazing people, and truly humbling human beings. If you have been in the zone of depending for life on the goodness of strangers, you will understand. Another huge thank you to our wonderful neighbours who stepped selflessly into our lives on that horrible night. One or two came all the way with us, and there were at least five people who I will not name but who certainly acted with selfless concern. You did not hesitate in our hour of special needs. We will not forget you.

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Did you know beforehand?

I’ve been asked that question frequently. It seems to be the first thing that occurs to a lot of people.

We had no idea that Jacob would arrive with Down Syndrome. Quite a few people in the hospital were surprised. You could argue that it should have been spotted, but Jacob didn’t make it easy for the medics. His heart showed no irregularity, which would normally be one of the first things to be picked up by the scanners. Nor was the slight bulging at the nape of his neck very prominent, another thing that would have indicated in utero that something was different.

There is a test that can be taken from about four months into pregnancy called an amniocentesis test. Dee didn’t take it, although she would have been 37 when Jacob was conceived, and the stats show that the chances of having a baby with Downs increase with age.

I’m not sure what we would have done with the knowledge anyway. Probably fretted a hell of a lot and tried to prepare for the unknown. Kind of impossible really, and I personally am glad that I didn’t know. In my eyes Jacob has never ceased to be what he first and foremost is right now: a baby. Knowing about the DS might have had an unhappy effect on that simple little fact.

On the issue of statistics, I turned up these on the UK’s NHS website.

Aged 20 years, a mother has a one in 1500 risk of conceiving a baby with Downs; aged 30 it’s one in 800; aged 40, that risk jumps to one in 100. If you are at the older end of this spectrum and thinking about conception, it’s certainly a factor.

We’ve got some news

“When I was a boy of 14, my father was so ignorant I could hardly stand to have the old man around. But when I got to be 21, I was astonished at how much the old man had learned in seven years.” Mark Twain

It’s a little personal failing of mine that at every age I’ve always considered myself to be as clever as a cat. Of course as I get older and I look back, I realise just how thick I really am. That much has been fairly consistent at least, but even here in the middle ages I still suffer from the illusion that now, finally, I really have learned something. It will undoubtedly become apparent in five years’ time that I was wrong again, but at least knowing that now is some kind of progress, no?

Certainly, one lesson I have learned is that observing people’s reactions to important news will teach you a hell of a lot about them. Dee and I were dealing with hugely conflicting feelings when the baby’s condition was confirmed. Our emotions were up and down minute by minute, and we hadn’t properly absorbed any of the information that had been given to us by the incredibly supportive staff in The Coombe hospital.

We didn’t have anything as organised as a strategy, just confusion. We started telling our families, beyond the two or three people we’d let know from the outset. It was apparent very quickly that family would be incredibly important to us now. Not necessarily for practical, on-the-spot help (although that too), but more as an immediate emotional support, a comforting and strong presence. They were all fantastic, and I won’t ever forget the acceptance, the concern and the instant, unthinking offers to help that our brothers, sisters and inlaws rushed to give us.

One or two of the gang had worked with Downs people, but nobody in the extended group had any family experience of it, and it came as a massive shock to everybody. Without question it hit our parents hardest. They dealt with it in various ways: through silence, or by clinging to a misdiagnosis hope, or by being visibly depressed. I think their experiences of people with Down Syndrome, a generation or more earlier, brought its own baggage. It makes me sad now to think of all those beautiful people whose lives were never really all they could be because the condition was misunderstood, and effective therapy just didn’t happen. Forgotten lives, lived in someone else’s misguided shame.

I don’t judge the previous generation for that. I am thankful for Jacob’s sake that progress in the last few decades has been wonderful. It has also, I believe, made it easier for our parents now. They’ve all been completely selfless in their support and they’ve had to deal with it, same as the rest of us. I think that they’re coming to see it less and less. (That has to be one of the miracles. The closer you stand to it, the less you see of it. I’m writing as the father of a sixteen week old boy with Down Syndrome, and I need to remind myself frequently that he has this condition. That gives me a quiet chuckle.)

Reaction amongst friends too has been hugely positive. It’s been quite funny to see the spectrum of responses. One or two well-meant (but slightly too positive!) people congratulated us TOO LOUDLY ON THE WONDERFUL NEWS! Quite a few blurted out the ‘I’m really sorry… I mean, not sorry, but…’ line. Some were just very uncomfortable at first, not knowing what they should or could say, or how they could help. I imagined that I could sense all of them saying ‘Jesus, that could’ve been us.’ That’s fine too. I would’ve felt the same way, I think. But knowing Jacob now I’m only pleased that he chose us, and can’t imagine him being anyone else or any other way. He’s perfect. That sounds very Hallmark, I am aware, and my wife will probably respond with a ‘Pass the bucket.’ It’s true though. 🙂

But. There’s always a but. And it goes back to what I said about learning from the reactions of others. Those hollow, off-the-cuff responses from acquaintances that left me with a momentary distaste. The shocked looks, bordering on revulsion, that escaped before they were brought under control. The ones where it was quite apparent that we had a plague child and that but for the grace of God there went they. Yeah, we got one or two of those. And I won’t lie, all the positive vibes in the world from 99 people STILL take a dent when you’ve got just one who’s ignorant and not smart enough to hide it. You can’t blame them. Oh yes you can. They don’t know Jacob. They don’t know what a gift he is. They don’t know that I have a special prayer now that I sometimes find myself saying when I have Jacob in my arms.

There, with the grace of God, go I.

Ok. Now what?

The hardest time I had was that period before someone qualified could confirm what we already knew. ‘Your son has Down Syndrome. That won’t be changing. You must start to find out what that means for your lives.’
That didn’t happen for about twenty four hours. We couldn’t tell anybody, other than one or two very close people, that this little guy, still nameless, was different, just in case he wasn’t. Hard though it was to think about telling people that he had DS, it was unthinkable somehow to contemplate turning around and telling them that no, actually, he didn’t have it, sorry, got it wrong there. Bummer, but he’s ok. (Don’t ask me why. I haven’t figured it out yet. The doc did say that on occasion, when a Down Syndrome diagnosis gets undiagnosed because chromosome tests come back normal, it can be hugely upsetting for parents.)
When I got back home I picked up Chris and Andrew, our other two boys, from our neighbour’s house. Chris is six, Andrew three. I told them that they had a new brother. Suddenly the thing that had been missing was there. In all the uncertainty over his condition we’d forgotten a simple detail: we had a new baby! Chris’s face was a picture of joy. Andrew was less perturbed, but he was still loving the attention (and the chocolate) from the wonderful Helen and her family. The simple, normal reaction to extraordinary news was another little (almost unremarked) milestone on this new journey.

The next day we sat calmly in Dee’s pale green room at the hospital as the consultant told us what we needed to hear. Yes, our son had Down Syndrome. Yes, it would affect his development. We could expect him to reach an intellectual maturity of a twelve or thirteen year old at most. Of course socially, the doctor reassured us, his maturity could reach well beyond that.
I nodded and took it all in calmly, asked a few sensible sounding questions, filed all the information away for later. I had a vague-ish idea of what social maturity might mean. I considered myself well read, but I’d never heard of Trisomy 21, the specific type of Down Syndrome he has. I had no idea that he had 47 chromosomes whereas I had only 46. That extra one (good old chromosome 21) was the spanner that had randomly been dropped into his works and our world when his cells were forming.

We hope and pray that it doesn’t make things too difficult for him.

The first meeting

6.30 pm, the Coombe

My initial reaction, on first guessing that Jacob had Downs, was deceptively small. He was born at half past six in the evening. Judging by the grey November sky, he didn’t appear to have packed any sunshine with him. 2.6 kilos. Small, with beautiful blonde hair and blue eyes in a high, almond setting. Our floppy little creation was put in his mother’s arms, and as he was turned over I thought hold on, those eyes are different.

Those eyes gripped my heart like they were cold little hands, utterly depending on me and yet unknown to me in a way that I hadn’t expected. I’d love to tell you that they held a zen-like innocence, those eyes, or that they exuded some intelligence beyond the normal.

Maybe they did, but I didn’t see that. Certainly not in those first few minutes. They made my insides feel as though they’d been dropped down a mine shaft, those eyes. My mind rushed forward into the future with a blind terror. What did this mean? What could it mean? Was I right or wrong about what I was thinking? I remember going to the toilet then. Me and my unexpressed idea. I had never felt more alone. This was maybe two or three minutes after the birth. Dee was very uncomfortable with post-birth pain and hadn’t seen the baby properly yet. The fact that he was a third boy when we’d both been hoping for a girl would just be impacting. I guessed it would be hurting her deeply, but I was beyond that now.

I came back into the room, and the look of concern on the midwife’s face relieved me, strangely enough. Now I could hear Dee saying the nightmare words out loud. Has he Down Syndrome? The midwife was saying ‘Oh no, I don’t think so.’

I knew, beyond any doubt, that she meant well but was wrong. The panic of those few unforgettable minutes instantly passed away. There was concern, of course. But I saw Dee lean over our new little man and take him to her heart just as he was, with utter conviction. I knew then that this was somehow going to be alright. Somehow.