The reality of preterm birth

No first time mother-to-be expects to find herself in the delivery suite at the end of week 25 of her pregnancy but in October 2006 I found myself in the unfortunate situation of being one of those ladies who contribute towards the 4500 babies born too early in Ireland each year. My pregnancy had been marred with complications and suffering a placenta abruption—a condition that could cost us both our lives—resulted in a 160 mile dash to a tertiary unit where our daughter, Amelia Faith, was delivered by emergency caesarean section. She weighed just 780 grams.

The delivery room was deathly quiet as one faction of the army of medics fought desperately for nine minutes to breath life into Amelia’s tiny skeletal body and the other half fought to save my life. Unlike most births, I did not get to see or hold my daughter after her birth and the physical and emotional emptiness that ensues following an emergency delivery was compounded by the stark reality that my daughter might not survive and might never know the loving touch of her mother in life.

24 hours after her birth, I was finally brought to the Neonatal Intensive Care Unit to meet Amelia.

As I stood outside the ward and peered at the 10 incubators in the room—each housing a baby smaller than the next—it struck me that I didn’t even recognise my own flesh and blood. Nobody and nothing could have prepared me for the journey that lay ahead: the discharge home from hospital three days after birth without my child; the daily two hour commute each way to spend 14 hours sitting beside Amelia’s incubator desperately wanting to reach in to touch her; the heart-stopping fear flowing through my body each day as I emerged from the hospital lift to walk the long lonely corridor to the NICU, not knowing what crisis we were going to face today; the dark thought that today might be our last together.

As I stood outside the ward and peered at the 10 incubators in the room, it struck me that I didn’t even recognise my own flesh and blood.

Day after day: praying she would overcome the myriad life-threatening infections; watching her endure a multitude of painful medical procedures; screaming inside on each occasion that she had to be resuscitated; witnessing eight life-saving blood transfusions and hoping she would find the strength to defy the odds that at times looked very much stacked against her broke every ounce of my physical and emotional being. The heartache of leaving her each night as we travelled home to our empty house is indescribable.

We wouldn’t be home from the hospital more than five minutes before I would contact the NICU about Amelia’s condition. Such was the gravity of the situation that every night as I bid her farewell a part of me was preparing to accept that this would be our last time together. Sleep or what little sleep I managed to grab refused to ease the pain of failing my daughter.

Setting an alarm to wake me every three hours so that I could express breast milk for a child I had yet to hold was beyond surreal—yet this was one of the few things that I could do for Amelia in the hope it would help her to survive.

Four weeks into our NICU stay—after several late night dashes to her bedside when she had taken a turn for the worse—we finally got to hold Amelia for the first time. She still weighed only 900 grams and—honestly—even as she lay skin-to-skin against my chest I couldn’t feel her. A moment which should be filled with joy and gratitude was tainted by the feelings of pure guilt that the pain and suffering that my little girl had had to endure was entirely my fault. The irrational guilt that accompanies a preterm birth cannot be quantified and twelve years later that guilt still lives within my heart—but I have learned to embrace it as part of our journey and it no longer owns me.

Fast forward three months and on Christmas Eve 2006 we got what most families might consider the best Christmas present ever… we took our little girl home. I must admit there was a moment when I thought that the staff had made an error in their decision to release Amelia. A part of me hoped they would quickly realise their ‘mistake’ and the ‘normality’ of life being hooked up to a whole host of machines would quickly be resumed. Our NICU stay had institutionalised us and without realising it, we had grown accustomed to every aspect of Amelia’s life being monitored or recorded.

We had become utterly dependent on the highly specialised medical team.

Suddenly, we found ourselves in the role of Amelia’s carers: a task neither of us felt qualified or confident to take on. Amelia had been diagnosed with Chronic Lung Disease and her breathing—or lack of it at times—continued to be an issue for the first twelve months at home. She had to be attached to a breathing monitor by night and we got quite adept at jumping out of bed when the alarm to indicate that she had stopped breathing would activate in order for one of us to restart her breathing again.

As with many preterm infants, feeding has always and continues to be an issue for Amelia. Her growth rate was delayed as a result of her feeding issues and for a number of years we found ourselves embroiled in a vicious circle of specialists all trying to get Amelia to eat. Finally at age three, we discovered Amelia suffered from oral aversion, most likely related to her prolonged time on a ventilator during her first four weeks of life. Since then we have adapted our approach to her feeding issues.

Four weeks into our NICU stay, we finally got to hold Amelia for the first time. She still weighed just 900 grams.

A major concern to Amelia’s medical team was a haemangioma which was growing aggressively on her left foot. Preterm babies are more predisposed to developing haemangiomas and indeed, Amelia has several on her body. However, the speed with which her foot growth was developing led her medical team to speculate that she might end up losing a part of her foot and it would be unlikely that she would walk normally. Thankfully yet again—and with no medical intervention—Amelia defied the odds on that score and despite having a mis-shapen and discoloured foot and losing part of her little toe, she learnt to walk at age two and this anomaly has not prevented her from participating in sporting activities.

Having a premature baby in your house during the winter season is one of the most isolating situations to find yourself in. A virus called Respiratory Syncytial Virus must be the most dreaded three words any parent of a premature baby can hear. This virus surfaces each year around September and lasts until April and is life-threatening for premature babies. Prevention is the only guaranteed cure but keeping a baby in quarantine for nearly seven months is an impossible task. I had witnessed several babies succumb to this virus during my time in the

NICU and for the first three years of Amelia’s life, I lived with a knot of fear in the pit of my stomach each time she fell ill with a respiratory complaint. Her immature immune system resulted in many bouts of illness and hospitalisations in those early years but this too has resolved over the years.

Amelia is now 12 years old and has done remarkably well for a baby of her gestation.

She has dyspraxia, sensory processing disorder and some balance, social anxiety and eating issues but to the outside world she is a happy pre-teen surrounded by loyal and understanding friends.

Looking back at her childhood, I often remark how I would have reacted on December 24th 2006 had I been aware of the many sleepless nights, countless bouts of illness, years of hospital appointments and early intervention therapies that lay ahead. I certainly found inner strengths I never knew I had but would I ever want to retrace my steps again… never in a million years! Our life-changing experience of having a preterm baby and navigating the oftentimes uncertain waters of years of medical follow ups, inspired me and five fellow parents of premature babies to set up The Irish Neonatal Health Alliance. ■

Mandy Daly