Further Confessions of a GP

Karen’s baby

I like doing antenatal checks; it is one of the few times during my day that a patient isn’t coming to see me because they are unwell. The process of measuring pregnant tummies, listening to foetal heartbeats and having chats about baby preparations is a lovely part of my job. Karen’s appointments had been no exception. She was very excited about the arrival of her first child. The pregnancy had been normal and her antenatal appointments with me had been unremarkable.

I only got wind that something had gone wrong when I received a letter from the hospital. Karen’s waters had broken a few weeks early, and her baby had then started to show signs of distress during the later stages of labour. The hospital team had initially tried to use forceps to get her baby out and then went on to perform an emergency caesarean section. They discovered the umbilical cord was wrapped around his neck. When he was finally delivered, the baby didn’t start breathing. The paediatric team tried to resuscitate him with oxygen, and when he still didn’t breathe he was put on a ventilator and rushed to the neonatal intensive care unit.

It was touch and go for several days, during which Karen barely left his cot side. Her baby son Wesley had been starved of oxygen for too long during the birth, and it had caused some damage to the brain. Ironically, by a mechanism I don’t fully understand, the oxygen that was then given during the resuscitation period to keep him alive went on to cause further brain damage. The brain scans confirmed that quite extensive damage to Wesley’s brain had occurred, but the neonatal specialists explained that only time would tell how severely disabled he really was.

It was several months before I met Wesley for the first time. He had been kept in the special care baby unit for 12 weeks and there were all sorts of ongoing problems. For Wesley to leave hospital he needed to have a mobile oxygen supply and also a special feeding tube that went into his stomach via his nose. I popped in to see how they were getting on on my way home one evening. ‘He’s gorgeous,’ I said, as I peered down at Wesley in his specially modified cot. If I’m completely honest, he wasn’t gorgeous. He was odd looking with a large forehead and bulging eyes. He could sometimes focus on light in the way that a baby a few days old might, but he wasn’t smiling or showing the sort of interest in the world that a normal three-month-old would.

Karen looked down at her son with immense pride, and it really moved me to witness the overwhelming strength of a mother’s love. From the outside all I could see was an abnormal-looking disabled baby, but the maternal bond she had with her son was as strong as any mother’s could be.

As I stared down at Wesley, his eyes wandered aimlessly in different directions and I wondered just how much he would develop over the months and years to come. As a parent myself, I can’t possibly imagine how it would feel to care for a severely disabled child. My fatherly love has always been quite selfish. I’ve always adored my children, but it wasn’t until they started giving me something back that I really began to fall in love with them. The sleep deprivation and constant screaming drove me to distraction until that first precious smile melted my heart. I was completely enthralled when my children started to grab things and then roll over, sit up, crawl, babble, talk and walk. These are all just normal developmental milestones that we reach, but for me, I needed those milestones to make the purpose of parenthood tangible. Would I be able to love and care for a baby like Wesley who might never reach even the most basic stages of human development? I would like to think I could be as amazing as Karen and offer unconditional parental love, but I’m not so sure. I guess until faced with the same scenario, none of us can be completely sure how we would react.

Over the coming months Wesley remained stable. So, when he reached four months old, Karen was able to take him on outings to meet up with other mums with similarly aged children. Most normal four-month-old babies still don’t do a great deal, so the contrast wasn’t too marked. As the months passed, however, the difference between Wesley and the other babies became much more obvious. Though Wesley grew in size, he continued to lie passively like a newborn while his peers starting sitting up and babbling. He was also having regular seizures, which would upset the other mums. The obvious contrast between Wesley and what was considered ‘normal’ was becoming too much for Karen to bear. She started to withdraw herself and Wesley from the world and spent more and more time at home. She had to tell her boss that she wouldn’t be able to return to her job after her maternity leave ended, because she didn’t believe that anyone else would ever be able to look after Wesley and provide him with the care he needed. Her relationship with her husband also started suffering.

One day, she came to see me asking for counselling and an antidepressant. Her love for Wesley remained as strong as ever, but the rest of her life seemed to be crumbling around her.

I spent a brief period working in obstetrics in Mozambique early in my career. Most of the babies seemed to pop out with minimal intervention needed, but, as in this country, there were times when things went wrong. I can remember one occasion when a baby boy was born like Wesley with the cord around his neck. The midwife wiped him down and gave him a few pats, but he didn’t start breathing. In a slight panic I rushed over to get the oxygen. Mo, one of the local doctors, put his hand on my shoulder as if to say ‘stop’. There were no ventilators or intensive care units where I was working, but there was some oxygen and a face mask. I didn’t understand why Mo wouldn’t let me at least give it a go.

‘His brain has been starved of oxygen for too long,’ Mo calmly told me. ‘It wouldn’t be fair to try to revive him.’

I was shocked at Mo’s attitude. He had been such a caring and compassionate doctor up until now. Surely this baby deserved a chance?

I ignored his advice and took the baby over to the oxygen machine and fitted the tiny oxygen mask over his face. As I was struggling to turn on the oxygen cylinder, I could feel the baby’s mother’s desperate eyes watching my incompetent fumbling. Mo came over and calmly took control, expertly performing neonatal CPR on the tiny motionless little boy. We kept going for several minutes but stopped when it became clear that we were not going to save him. All the way through the resuscitation, the mother had watched us in complete silence. When we finally stopped, she started wailing. The cries were so loud you could hear the unrestrained anguish. Mo wrapped up the lifeless baby in a towel and handed it back to the grieving woman before we made a shamefully quick exit. I couldn’t bear to hear that raw grief, so I walked further and further away. It was a painfully long walk before I could no longer hear her.

Over a beer later that evening, Mo tried to explain to me why he hadn’t wanted to attempt resuscitation. ‘These people are very poor,’ he explained. ‘They can’t afford to have a disabled child who won’t be able to look after himself. That mother needs to be able to work to feed the other children, but she wouldn’t have been able to if she had a disabled child. The whole family would suffer.’

‘But surely it’s not for us to make a decision based on this?’ I countered.

‘No, it is God’s job to decide and he made his decision when he put the cord around the baby boy’s neck.’

Sometimes I wish that I too believed in God so that I could justify some of the terrible things I’ve seen as simply being a divine will.

However much pain and hardship Wesley has caused Karen, I’m 100 per cent sure that she wouldn’t for a moment wish that he hadn’t been resuscitated. While resuscitated babies are left with varying degrees of disability, others make full recoveries. I would like to think that we should value the lives of all these children, but I sometimes wonder if there might be a point when quality of life would appear so limited that we question the ethics of artificially maintaining life. As a doctor, I can’t give an answer to when this point should be any better than anyone else. Wesley is now nearly two years old and he is still at the developmental stage of a newborn baby. Karen tells me he seems to like it if she plays him music and gently rubs his tummy. Is that a quality of life worth all the suffering? Karen would say yes. I’m not so sure.