Further Confessions of a GP

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.’