Everything That Makes Us Human

by Jay Jayamohan

  ‘Whoopee,’ I imagine the parents sarcastically telling me. ‘That’s such good news, Doctor. You’re telling us our baby won’t have the mental capacity to even understand how disabled they are …’

  I’m walking a fine line. I only speak of probabilities, not absolutes. Doctors have been wrong before. Miracles have happened.

  After ten minutes during which the parents have just sat there mutely, I pause and invite questions. To my mind I’ve told them everything I can. They’re forewarned and forearmed about what’s likely to come. They doublecheck one or two things. Ask me to repeat this or that. When I’m satisfied that they’re on the same page, I step it up. ‘Okay,’ I say, ‘the choice is up to you.’

  And what a choice. I’m not saying, ‘Would you like me to improve Baby’s leg function or bladder control?’ I’m not asking, ‘Should we fix this or that?’ It’s much more primeval. More primitive. The question no parent ever wants to consider: Would you still like to proceed with your pregnancy?

  I don’t say this directly. Not without being asked. Most parents will seek my opinion eventually. They tend to ask two things. The first is: ‘What would you do?’

  It’s such an explosive question. I’m not particularly religious. I’d describe myself as a lapsed Hindu/agnostic. I understand faith in others and I also understand that innate burning fire that drives most – not all – of us to procreate and bring new life into the world. But professionally speaking, my answers focus on two issues that concern the child’s welfare: will your child’s life be one of an unfair amount of pain and will they have a quality of life that is acceptable to the family and ultimately to them? And I’d also put this question to the parents: will you be able to cope?

  I’m there to counsel, to advise, to paint a picture of the future. I can’t give spiritual direction. But, as a doctor, I can try to describe what life going forward will be like. For the family and, most importantly, for the baby.

  Raising a severely disabled child is not for the faint-hearted. I’ve seen otherwise strong, healthy units destroyed by the addition of a child with special needs. But I’ve also seen very disabled children having a fantastic quality of life and giving their families unending amounts of joy and happiness. I’ve seen both outcomes and I can’t predict either. The best I can do is present some questions that parents might want to consider.

  How able is your family to spend as much time as may be necessary with the new arrival? This could be at the expense of their siblings, of course, or it may turn the siblings into carers – for better or worse. Is the enjoyment that a brother or sister may get from helping look after the baby ‘worth’ the very rapid growing up they might have to do?

  Will your finances affect how much time and care and – harsh as it sounds – attention you can afford to spend on your newborn? Will you hire somebody to be with them or will one of you take a career break to attend to his or her very specific needs? Even if you can afford it financially, will you grow to resent it?

  It’s a strangely unquantifiable question, but basically, will this family be able to cope with this difficult situation?

  I don’t know. They don’t know. But they are the ones who will have to decide. All I can offer is this: ‘Please be honest with yourselves and each other. Now is the time to make hard decisions. Very soon it will be too late.’

  The issue in which I am more confident of taking sides concerns the baby’s well-being. If I know that it may struggle to breathe unaided, that it will probably require numerous surgical treatments within a short amount of time, that it may not enjoy many moments of peace, then I will say so. As a healthcare professional I can’t tell them what to do, but I can tell them what to expect.

  The difference is when they ask me what I personally would do. What would Jay the dad do in their shoes? Many of my colleagues avoid this question – and that is probably the right thing to do. But sometimes, the parents REALLY want to know. I am not in their shoes. How do we know how we may react in these situations? Often it is impossible. Of course, I have had three children with my wife, and each of them had an ultrasound scan. We had discussed what we would do if there were problems found with each of them, and we didn’t agree with each other.

  Sometimes I say, ‘Okay, totally without prejudice, just me speaking from the heart, on purely personal grounds, I would not go ahead with this pregnancy. I believe that your baby will have such brain injuries that they will have little or no quality of life. They will also probably undergo more suffering than anyone deserves.’

  Other times I say, ‘Yes, I would continue if this was mine. Your baby will have problems. They will have a different life to what was wanted or expected. But different is not the same as worse. It’s just different. Many people have no disabilities, either physically or developmentally, and basically waste their lives doing nothing useful. Many of my patients, with the sort of problems your baby will probably have, enjoy great lives – and are happy and productive members of society. They have a worthwhile quality of life.

  ‘That is what I would do.’

  The second question I’m asked is much more welcome. ‘Can we think about it?’

  I’m always pleased when parents want to take the time. It shows consideration. These things shouldn’t be rushed. That being said, we do need the decision sooner rather than later. With a termination on the table, facts will only get you so far. What mothers don’t want to do is to go from an insensate pregnancy to feeling the baby move. You can talk about all the doomsday science in the world, but that counts for nothing compared to the bond of a mother experiencing that kick or hiccough or stretch for the first time.

  Sometimes, people take a day or a weekend. In this case, the family just want a bit of time away from me. They get up to return to the waiting room, but I won’t hear of it.

  ‘Stay where you are. Take your time. Relax.’ I collect my scans and notes and head back to my own office across campus. ‘You have my number. Call me when you’re ready.’ I say to the specialist midwives who play such a vital part in this care pathway.

  I’m barely back at my desk when my mobile rings. They’ve decided. Or have they? I walk back over.

  Their minds are in turmoil, spinning. They both start speaking at once, talking over each other. I let them run on, then calm them down and nod at Mum to go again.

  ‘I worry what people will say if we terminate a baby just because he’s a bit poorly. We’ll just look selfish.’

  Dad adds, ‘I worry about bringing a baby into the world that we think is going to be in pain.’

  It’s two sides of the same coin. A coin I’d prefer them to ignore.

  ‘I know it feels like the eyes of the world are on you, but they’re not. It’s just you and me in this room. No one’s judging you. No one knows exactly what you’re going through. It doesn’t matter if ninety-nine other people have chosen option A; if you want to choose B, then that’s the right choice for you. It is your decision alone to make.’

  It’s a minefield. A moral and emotional booby trap lining every direction. But I can see in their eyes they have reached a conclusion.

  ‘We’ve decided not to go ahead,’ Mum says.

  ‘You’re sure?’ I ask.

  ‘It’s the right thing.’

  I nod. I smile. I try to be positive at this devastating time. From a medical point of view, they’ve made the decision. The obstetric team will arrange to perform the procedure within twenty-four hours. My time with this family is over. But they will have to live with their decision forever.

  Every family is different. Some respond to the bombshell of spina bifida as though a gunman has already taken out their loved ones. Others are more stoic. Some seem almost upbeat. I treat them all the same, offer the same guidance. I’m like a judge. I can’t decide the outcome, but I can direct the jury. But sometimes families make decisions that I can’t comprehend.

  Another young couple were passed my way. Hard-working, good jobs, big prospects. On paper they
had decent parent potential. The spina bifida alarm had been sounded as standard. The obstetrician had done his thing, I’d been called over and, as empathetically as possible, had unfurled their future offspring’s health chances. They immediately decided to terminate.

  In other circumstances I might have admired their clarity of vision. Except in this case, the prognosis wasn’t that terrible. Of the levels of severity, this one was as low as I’d seen it. The baby would probably walk, with help. The issues would be likely restricted to the ankles, and maybe some problems with bladder function. The child would almost certainly be able to attend regular school.

  In short: would it be perfect? I had to say, ‘No, probably not.’ Not by the accepted understanding of physical development, but it would be pretty close.

  ‘Then we would like to terminate.’

  ‘Are you sure? There wouldn’t be that much …’ I’m about to launch into my spiel about quality of life and how their baby would, by all indications, have a good one.

  ‘We’re sure. We’d like to terminate the pregnancy.’

  I see so much pain in my profession. So many parents anguishing over whether they’d done something wrong. So many babies afflicted by the most terrible of ailments that I find myself wondering whether death might be a blessing. What I see most consistently are parents fighting to secure any chance of a life with their baby.

  So, when I’m faced with a scenario where a foetus is being terminated, despite being likely to have had what I would consider a different, but good quality of life, I sometimes struggle. But, as ever, all I can do is lay out the facts. They have to make the decision – it is not up to me. And in this case, a decision has been made with considerable conviction. Who am I to judge?

  CHAPTER SIXTEEN

  YOU’RE ONE OF THOSE

  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 s
hare 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.