It wasn’t so long ago that spina bifida seemed a much more common diagnosis. Growing up in Liverpool, then London, there were permanent collection tins in shopping centres, adverts offering practical support, regular mentions on current affairs programmes. So what changed?
We all still start life as a ball of cells. We then become a flat plate. We develop a head, a back, a bottom, legs and feet. The skin and the spinal cord come from the same cells. Usually they grow together as fully as expected. But sometimes they don’t.
So far, so spina bifida. The only difference is that now we catch it earlier, for which we have advancements in scanning technology to thank. However, an early diagnosis is just part of the story. It’s one thing being able to identify with some clarity a potentially life-changing developmental issue, but another to deal with it. It feels like the really big change in the management of spina bifida is access to, and deciding whether to have, a procedure for termination.
All the technology in the world is no match for a shift in norms of morality. A modern sonographer can isolate spina bifida with unerring accuracy. But if you live in a culture that’s opposed to abortion, what is the point?
The couple I’m about to meet are taking my visit as a courtesy. They’ve had their twenty-week scan, again as a nod to convention. If ever there were a case of going through the motions, this is it. They didn’t want to know the gender of their baby and they certainly weren’t concerned with its health. They were pregnant. They were grateful. They were standing on the verge of progressing from being a couple to becoming a family. And nothing was going to prevent it. Not even the prospect of having a child with a severe physical and mental disability.
The obstetrician and I look at the images on the ultrasound machine while he does a new, up-to-date scan. We do this so I can ask questions and he can show me answers, as much as the position of the baby will let him. As far as I can tell, their baby will register at the more severe end of the condition’s scale. A large degree of high function will be absent from the second that he or she emerges from the safety of the uterus’ cocoon. We’ll be lucky if he or she gets to breathe unaided for a single day.
We finish up, and ask them to wait in a counselling room. Then the obstetrician and I talk about the case in private.
‘They’ve really made up their minds,’ he says. ‘Termination isn’t on the table.’
‘So they’re really determined to go ahead?’
‘One hundred per cent,’ he replies.
And now for the million-dollar question. ‘Religious?’
‘What do you think?’
Another redundant question. ‘Okay,’ I say, ‘let’s go and see them.’
There are so many variables in medicine. Advances in technology or research can turn an entire field of expertise on its head overnight. It’s an effort to keep up. Yet some things never change. All the evidence in the world can be no match for a single person’s religious beliefs.
I can never give promises just as I don’t touch predictions. I deal in likelihood and best- or worst-case scenario. I follow the evidence and interpret it as best I can. And yet sometimes that prognosis goes out the window, along with my twenty years’ experience and more than a decade’s worth of training. It can sometimes all count for naught in the eyes of religious or cultural opinion. And it doesn’t even matter which. They all appear equally emphatic: babies must be born.
I’m surprised to see the family crying. And relieved. The whole stoicism in the face of adversity thing can be unnerving. Maybe this is not going to be so predetermined after all?
It’s wishful thinking at best. A commitment to God doesn’t negate human emotion. I make a note to chastise myself later for my assumptions. It doesn’t take long to discern that they are both torn. The Almighty might have the last word, but it doesn’t mean they agree with Him. Not entirely, anyway.
‘Your scans,’ I begin.
‘We only did it to be prepared,’ Dad interrupts. ‘It makes no difference.’
‘You’re not worried?’
‘Of course we’re worried. We’re besides ourselves. But there is no choice. The baby is coming. We have to be ready. God wills it.’
It’s impressive the strength of people’s faith in the face of what I think is really, really amazingly bad news. They are upset, they’re distraught, but they still take the positives: ‘Well, we’ve got our baby and we’re going to love our baby because this is what God has decided.’
I have my script. I trot out the facts, the stats, the evidence, the previous cases that have begun this way and ended well sometimes, badly mostly. I’m giving it the realistic sell. Not quite the big push, but there is a really severe level of problems in this baby. I want them to have a realistic view of what their life, and that of their child, will be like. Yet all the while knowing that I’m shouting into the wind.
I am happy for the family to take all the information we can give them and make either decision. But I feel somewhat frustrated that the facts are irrelevant. Why is that, I often ask myself? Why does it matter to me why they make their decision? They have made it – I need to accept it and move along. But, rightly or wrongly, I feel myself trying to make the discussion stay relevant.
‘Thank you for seeing us,’ Dad says. ‘I know you’re a very busy man.’
I get the sense he is closing things down.
‘I appreciate your efforts and we’ll be very happy to have you treat our baby when he or she arrives.’
I am being closed down. It’s an odd feeling. I’m used to running my own meetings. But then I’m used to being the higher power in the room. Not today. I feel like I’m back in my student days with an overbearing consultant overruling my every decision. Except I could see the consultants. The entity sharing my office now is rather less tangible.
‘What do you think?’ the obstetrician says, the second I emerge.
‘Not sure, if I’m honest.’
‘But?’
‘But any baby born into a family that really, really wants to give it a great home can’t be argued with. How many kids do I send home knowing that they’re not going to get half as much love as this baby will?’
We share a moment. Then one of us makes a joke at the other’s expense and we go back to our jobs, if not our lives.
Providing healthcare alongside the provisions of faith isn’t ever straightforward. Contrary to tabloid belief, overtly religious people don’t go around announcing it at every opportunity. Sometimes we’re deep into a meeting before I get an inkling of what’s driving their narrative. And when I do it’s, ‘Oh, okay, this is where we are.’
But that’s just my personal opinion. It is irrelevant to this set of parents. The family went on to have the baby, and, despite a huge catalogue of problems, operations, hospital visits and stays, I have very rarely seen a child loved so dearly and given such a chance at enjoying life.
My wife fell pregnant with our first child in 2007. My obstetrician colleague was our go-to guy. Why work with the best if you can’t exploit it?
After one such occasion, I walked my wife to the car park before strolling back to my office. By the time I got there, the phone was ringing. It was the obstetrician.
‘For God’s sake, what did you forget to tell us?’ I asked.
‘Why does everything have to be about you?’ he laughed. ‘No. This is different. We’ve got a case in I think you should see.’
‘Okay, I’m on my way.’
The majority of faces that pass through our joint care are youngish; twenties to late thirties. Every so often you meet someone closer to your own age. But that doesn’t mean you have any more in common.
The couple I was due to greet were mid-forties, my age essentially, and so, so desperate to have a baby. The years had not been kind. Miscarriage had followed miscarriage. They were at their wits’ end and expecting the worst when suddenly this latest pregnancy hit the twenty-week mark. It was the furthest they’d ever got. They came rushing in for their scans. They couldn’t believe it was happening. They were going to have a baby. And they wanted to see it on the monitors with their own wide, disbelieving eyes.
Unfortunately for them, the scans aren’t designed to show what you deserve. They show what you have. And what this couple had was the prospect of life with a severely disabled child. I’d like to say that it was just one of those things, a roll of the dice and it could happen to anyone. That’s what your neighbour or your best friend would say to make you feel better. As a neurosurgeon, a man of the disinfected cloth, I held a different view, as harsh as it seemed.
Looking at the couple’s charts I saw a myriad of lost attempts. So many pregnancies, so many miscarriages, so much heartache, but no discernible cause. Miscarriages do occur for random reasons, but multiple occasions can suggest a deep-lying problem. Maybe there’s a genetic thing going on. Perhaps it’s a fatal outcome of the chromosome mix of Mum and Dad. Hell, maybe it’s the wrong star signs combining – at this stage nobody knows for sure. All we can go on is the proportion of failures compared to successful pregnancies. And this one did, initially, appear successful. Until the sonographer handed in her homework.
Walking back to see the same obstetrician with whom I’d literally just had my own appointment was a struggle, I’ll be honest. Barely twenty minutes ago we’d been talking about my own prospective bonny, healthy, lung-bustingly normal baby. Now here I was, alongside the same man, about to counsel two innocent victims of genetic fate. Talk about mixed emotions. I was still buzzing with my own family news until the second he handed over the scans. Then I was on autopilot. I felt all trace of my wife and the baby fade. Jay the dad no longer existed. Jay the neurosurgeon was in the room.
The parents-to-be were perfectly lovely and clearly in love. For obvious reasons I found myself opening up about my own situation. ‘Listen, you know what, my wife is pregnant right now. We had our own scans this morning. I know exactly the huge elation you’ve been feeling up until now and I can only imagine the huge sword that is being passed through you at the idea of having to come and see me. But we’ve got to get through this, we need to talk about it and then you need to make a plan.’
‘A plan?’ Dad said. ‘Don’t we just come back in twenty weeks’ time?’
Oh, I realized, you’re one of those.
I’m so used to being asked my opinion that it can come as a shock when it’s not required. If you ask Jay the physician for his views on your situation, he’ll tell you facts and conclude, ‘But the decision is yours.’ If you ask Jay the man – the father – what he would do, he’ll say, ‘I’d go ahead with the birth’ or ‘I’d terminate in the interests of the baby’s health.’ I can’t not, as a living, breathing person, have an opinion. I can’t not put myself in every single parent’s shoes. Though I’d rather not, as it’s a horrible place to be.
To decide not to consult an expert at all is a bit like being lost in a desert and having a map but choosing not to use it. If you believe that God will lead you to safety quicker than any science, then why would you ask science?
I get it, I do. At least I think I do. I think sometimes I am religious, but just really pissed off at what God is letting happen in the world and to my patients. At other times, I decide I don’t believe at all. Is that petulance because God isn’t doing what I expect him/her to do? Who knows? And anyway, I need to leave that at the door. Like Dr McCoy almost said in Star Trek, ‘Dammit Jim, I’m a doctor, not a Hindu’. That would have been an awesome episode, by the way.
Even though on a census they might identify as Christian, most of the Caucasian native population of Britain – for want of a better overall description – are not particularly religious. They arrive, I advise, I guide and they base their decisions on my input. They’re all very grateful that these options are there.
But not so much the devout. Not the extremely religious of any faith. In my experience, they tend to put their religious views above even their personal views. I can see a lot of them are very torn by the decisions that they make. Their instincts as parents – as humans – are screaming one thing, but their training, their upbringing, their allegiance and their fealty to the flock dictates another path. ‘This is what God wants.’
I’m just a man in an invisible white coat. I can’t argue with that.
I can see the parents in front of me are more torn than they are letting on. In a strange way, so am I. Up until the moment of their child’s birth, these two mature adults are my patients. The second we have delivery, their concerns will radically reduce on my radar. I’ll be all about the baby. That is, if we get that far.
I still haven’t worked out if a termination will be decided here. I have a few more probabilities and possibilities I need to get through to them before they make up their minds.
‘To be clear,’ I say, ‘your baby, should you go full term, is never going to enjoy a life as you and I experience it. Your child is, as close as certainty allows, probably going to need multiple operations. They may be dependent on a ventilator for the rest of their life. And by life I mean “short life”. The expectancy for a patient with so severe a condition is probably measured in months or single years.’
The pair are nodding. I honestly think I might be making headway. A few more stats and perhaps I can stop and get their opinion.
‘We understand the difficulties,’ Dad says. ‘Yes, our baby’s life might be short. But that short life is important to us.’
‘Okay,’ I reply. ‘If that’s your decision, then I shall support your choice.’
I’d like to say my prognosis was wayward, that the baby’s afflictions weren’t half as severe as I’d predicted. But I can’t. He arrived eighteen weeks later in dire need of surgical intervention. The only consolation was that we were forewarned. Everything was set up. From birth to the first ventilator took minutes not days.
On top of everything else, the baby had severe chromosomal anomalies, a really damaged brain and no end of problems. In between every visit to theatre he was put on a ventilator.
Every procedure went like clockwork. We achieved the maximum I hoped we could. But it was never enough. We were always fighting a rising tide. Trying to build a sandcastle as the waves encroached further up the beach.
After the first operation I spoke to the parents. ‘Listen,’ I said, ‘it’s looking really bad here. We need to think about how far you want to go.’
They squeezed each other’s hands and Mum replied, ‘We want you to continue to go all the way. If God wants it to, this will work out.’
‘Okay.’
It was the same curt conversation following the second procedure and the third. Before I was due to operate for a fourth time I said, ‘I have to be honest. Your child is not going to get better from this intervention. Your child will eventually die. I estimate within weeks, but it’s possible it may take months. This is no way for him to live.’
To which Dad responded, ‘Can you be absolutely sure? Can you give us an absolute guarantee that this child cannot survive at all?’
And, you know what? I couldn’t. Sometimes being 99.9 per cent sure just isn’t enough. ‘No,’ I said, ‘I’d be really surprised if it happened, but I can’t give that cast-iron guarantee.’
He turned to his wife. They smiled at each other and kissed. Then, looking back at me, he replied, ‘Well, in that case, it’s not up to you. It’s up to God to decide. So please, do your job, keep going. Do everything you can.’
I shrugged. Not because I didn’t care, but I didn’t see any point arguing with them. At the end of the day I am a servant to the patient rather than the parents, and if we really wanted to, we could make this a legal fight. But I didn’t wish to do that. This poor family were struggling and needed support. Sure, they had it from God, but that’s also partly our role. But I needed to ensure we were always keeping my little patient’s needs at the top.
‘I’m not sure you understand the severity of your son’s condition. It is my professional opinion that if your child stops breathing, we shouldn’t put him back on the breathing machine again. If we do, he’s probably going to be there for life.’
‘Sir, you possess wonderful abilities and skills because God has given them to you. Please show your gratitude by continuing His will.’
For two months the baby never left the hospital. Never went home. Never experienced life without being plugged into one machine or other. The parents were regular visitors. One or both was present for a few hours every permitted session although, as the weeks became months, those visits grew shorter and shorter. The ward nurses, on the other hand, were there permanently. They had to be. They tended the boy, cared for him, cleaned and fed him. Like they do for all patients. It can be hugely distressing for these deeply caring women and men to look after the same child for too long. Attachments are great, but if the outcome is bad they can be a weapon turned. The nurses tend to rotate around patients to avoid this, but if you are on there long enough, you will end up being the object of affection of all the nurses. I watched, on day seventy, as they began their morning procedures. Strolling over, I asked, ‘How’s he doing?’
‘He’s not happy,’ one of them replied. ‘Watch the monitor as I clean him.’
I did. I saw how his heart rate spiked when the damp cotton-wool ball touched his tiny body. You’d expect some kind of reaction, but this was higher, more akin to distress.
‘Everything hurts,’ she said. ‘It’s not right.’
I couldn’t agree more. I just needed two other people to do the same. Or rather, I just had to persuade one of them …
It’s very rare that two adults, two parents, agree 100 per cent on every topic. Dinners, sugar, screen time, bedtime, swearing, chores – you name it, there’s wriggle room between parents on every topic. I am betting the farm that this more serious topic would be even more divisive.
‘I’ll speak to them again,’ I promised one of the nurses. ‘When do you expect Mum in?’
‘Well, she was here for twenty minutes yesterday around lunchtime. I suppose she’ll do the same today.’
I realized the nurse was having a dig at the parents, but in an odd way I took it as ‘good’ news. The fact that Mum and Dad were winding down their visits, downgrading them if you like, told me that on some subconscious level they were resigned to losing. Losing the fight with the disease, losing the son they had yet to hold. It’s surprisingly common for parents in pain to drift away. It’s like throwing up a wall between them and their pain. If they can’t see the baby, they can’t be hurt.
‘Bleep me immediately when the mum arrives,’ I asked the nurse. ‘I need to have a chat.’
It was closer to 3 o’clock in the afternoon when I got word she was in the house. I ran down to the special-care baby unit, and accidentally-on-purpose bumped into her.
‘Any change?’ she asked, forlornly.
‘No,’ I replied, ‘but I think you already knew that.’
She sighs.
‘Look,’ I said, ‘I know you believe that a greater power deigns this to be so. And I respect that, I do. But I have to say, you are not my patient. My loyalty – my moral and legal loyalty – is with that tiny baby attached to the breathing machine in the incubator. And I am telling you that subjecting him to any more treatments is not going to get him better.’
‘But …’ she began, then faltered.
I continued. ‘I think our choices are hurting him. Causing him pain he need not suffer. There is no medical justification for continuing treatment for your baby. He’s not getting better, he will never get better and every day that he draws assisted breath is another day of hurt and distress for him. Now, as a surgeon, as doctors, we do cause pain to babies all the time, but that is part of a treatment that we think will get them better. That isn’t what is happening here. Please, speak with your husband.’
Eventually, the dad came round. We agreed that the child had no real hope of survival. We just stopped artificially forcing him to stay alive. We focused our work on ensuring the baby would be comfortable and pain free. The end was natural and peaceful. Both parents were in shock. They’d put their faith in the Lord showing their son the way. Perhaps, after all, it had been a test. I’m inclined to think that’s how they interpreted it.
I have to be honest. This was the outcome I thought was needed. Did it give me any satisfaction to prove the parents wrong? No. Zero. My feelings are with my patient, the little mite who struggled in vain to survive against remarkable odds. If I couldn’t help him, I just wanted to comfort him. Finally, I’d done that.
I’m confident, following conversations with both parents, that no one could argue we’d not done our best. Put a gun to my head and we could have kept that baby alive for weeks more. But that would not have been in the baby’s interests. Or, ultimately, those of his family. I know we did what was right for that child. And I’m comfortable with that.
Dad eventually came to that conclusion, too. When the tears dried up, he shook my hand and thanked me for my efforts and for doing my best for his son. As much as I disagreed with his original logic, I was proud at that moment. For weeks we’d been at ideological loggerheads. At last we were on the same page. Each of us had only ever had his baby’s best interests at heart, we could all see that now.
Or, as the obstetrician put it, ‘You got him to admit that you were the only higher power?’
‘I did nothing of the sort,’ I replied. ‘I’m just grateful he didn’t accuse me of murdering his baby.’
Because, trust me, that goes on as well …