Two years ago, my newborn baby’s flesh was bruised and pricked. His tiny flaky body was covered in medical wires and cables, beeps ringing through the stark hospital room. He was taken from me when he was hours old, tucked in a little plastic box and rushed to the ICU of the Royal Children’s Hospital by ambulance.
My post-birth body was like a fraying jumper, weak and barely holding on, when the unexpected news came. Unexpected world-altering news after a healthy and carefree pregnancy. A series of seizures, signs of a neonatal stroke. Those ugly words did not correlate with the ecstasy we felt hours earlier, finally holding our baby after a long labour. Those words were never meant for us, or anyone.
Will he be OK, he’ll be back to me in a few hours, won’t he? I was meant to be holding my baby, having him breastfeed and nestle against me. His skin on mine.
Will he be OK, he’ll be back to me in a few hours, won’t he? I was meant to be holding my baby, having him breastfeed and nestle against me. His skin on mine.
Two days after my son’s birth, dazed on painkillers following my Caesarean, my husband drove me to the ICU at the Royal Children’s Hospital. I had to be with my baby, instead of being alone in the maternity ward, driven insane by silence and uncertainty.
I looked at my beautiful baby and I cried about the unfairness of it all. Was I to blame? It should have been me who suffered, not him. Was this my punishment, what had I done to warrant this?
I caressed my baby’s tiny feet. I couldn’t hold him for days, not until some of the cables and wires began to fall away. He moved from ICU to NICU, a small step in the right direction.
More ugly predictions, cold words from physicians. He may have ongoing seizures, problems with his sight, problems with his movement. There is a chance of him having epilepsy or cerebral palsy.
No one eased our pain and gave us any words of hope or promise, we just had to take it a day at a time. Will he be a healthy and normal boy, I wondered? Will he be able to drive, read, play sport? We all want our kids to be exceptional but, in some circumstances, we just want them to be normal.
You’ll show them, you’ll show them all, I whispered to my son in moments of defiance, when I saw glints of fight in his eyes. There was defiance in me when I chose not to grieve, even though a nurse said I should.
You’ll show them, you’ll show them all, I whispered to my son in moments of defiance, when I saw glints of fight in his eyes
When my son was two weeks old, we took him home. All the tubes and cables were gone and it felt like a small victory. My husband and I watched him like hawks, he was so fragile and there were no longer nurses or monitors. We fed him his anti-seizure medicine twice a day with a tiny syringe.
Oh, I love the smell of Keppra, it’s like bubble-gum, a nurse enthuses before our discharge, sniffing the bottle. There’s nothing delicious about six months of Keppra. The doctors’ predictions haunted me, their words found me when I was alone – in the shower or as I was falling asleep. It was a nightmare that could not be dulled.
It happened; it was real even though we were in the safety of our home. Some days felt like we never left the hospital, the beeps still ringing in our heads. There were triggers everywhere, ads for hospital dramas on TV, a careless slip of the tongue by visitors. It felt like we had gone through a war.
Yet, despite the avalanche that was dumped on us, my baby boy had his own plans. He was never any different from other babies his age. He met his milestones with ease. He rolled, he moved all his limbs appropriately, he was transfixed by new faces and colours. He was happy and full of giggles. He learned new songs, he walked, he played. My healing only occurred because my son did everything he was not supposed to do.
Yet, despite the avalanche that was dumped on us, my baby boy had his own plans. He was never any different from other babies his age.
In the words of our new paediatrician, my son is “amazing”. He won’t have memory of the period following his birth and he won’t be hampered by what happened to him. Nothing has stopped him or impeded him from being a very healthy, happy and normal child.
My son just turned two. His birthday is always very special, even if it conjures painful memories. Despite lock-down we had balloons, cake, gifts. It’s also been two years since his last seizure and being seizure-free for two years means he is unlikely to have them return. He has been off the Keppra for 18-months, slowly weaned off at six-months.
We’ve been superstitiously holding onto the Keppra in our fridge. But upon reaching this milestone we are ready to get rid of it. My husband, son and I poured out the revolting medicine and poured away a painful period of our lives, which is no longer a wound but has become a slick scar. We can all wear our scars proudly; they show us what we’ve overcome.
*Real name isn’t used
