What preterm birth taught me about myself
Oak: (Quercus) a symbol of strength and endurance
by Mandy Daly
Resilience is defined as the capacity to recover from difficult life events; it’s not a term I was familiar with until I suffered a placenta abruption at 25 weeks and 6 days during my pregnancy in 2006. The result was my daughter Amelia being delivered by emergency caesarean section.
Over 15 million infants are born preterm in the world every year and premature birth is responsible for the death of over one million of these babies.
Affected families find themselves unwitting players navigating the precarious journey of prematurity, struggling to parent in the toxic environment of the Neonatal Unit and existing in a parallel universe where surviving the hour is deemed a win. As a veteran and accidental authority on premature birth and with 13 years preterm parenting and advocating experience under my belt, I regularly reflect on what is often referred to as the ‘rollercoaster ride’ and wonder if and when I will ever get ‘off the ride’.
Over 15 million infants are born preterm in the world every year.
One of the greatest misconceptions about preterm birth is that the children catch up with their peers and will go on to live normal healthy lives. With the benefit of lived experience and a myriad of research that has been published since 2006, focusing on the long-term executive and cognitive function and the motor, physical and emotional development of infants born preterm, I have no hesitation in shattering that myth. The life I had anticipated prior to becoming a parent to one of the 4500 babies born too soon each year in Ireland was rewritten but not by me; preterm birth and its far reaching consequences have penned every day of my life since 8th October 2006. The person I was prior to that date will never be the same again.
Prematurity for many children and their families can have a lifelong impact, ranging from very subtle learning, emotional and processing challenges to significant physical, developmental and behavioural difficulties. For every infant born preterm, there is an extended circle of family, friends, teachers and work colleagues, who will continue to experience the ripple effect of prematurity long after the child has been discharged from medical follow-up.
Given the significant number of preterm babies born in the world each year, how do affected families survive and adapt to the experience? As a mother of a micro-preemie, now aged 13 and with ongoing developmental issues, it’s a topic I’ve rarely considered. Has my procrastination been a survival tactic on my part to avoid confronting the guilt that accompanies giving birth to a medically fragile infant, or avoiding addressing the pain of witnessing my daughter face the many medical and developmental issues that set her apart from her peers or is it a hybrid of several complex processes that ensure our survival?
Parenting a micro-preemie does not come with a manual and can often be as individualized as fingerprints. From the outset, I never felt qualified to embrace my role as Amelia’s mother; after all I had failed to bring my pregnancy to term; irrational as this thought may seem to most people, it is a sentiment so many mothers of preterm infants hold onto for years post-delivery. Amelia’s life potential had been curtailed by virtue of her early arrival and she would be burdened with ongoing challenges for the duration of her life.
Prematurity for many children and their families can have a lifelong impact, ranging from very subtle learning, emotional and processing challenges to significant physical, developmental and behavioural difficulties.
Our time in the Neonatal Unit saw me as a passive bystander watching strangers fill my shoes as Amelia’s mother. Because the concept of Family Centered Care had yet to be enshrined in our unit, I had limited access to my daughter which translated to very little skin-to-skin contact with Amelia, a regimented visiting schedule and an altered parenting role that placed me as a visitor instead of Amelia’s mother and primary caregiver. The one thing I could do for Amelia that could not be done by anyone else, was express breast milk for her; albeit, in a small, closet like room with two pumps which mothers had to queue for, and which served as a very busy public connecting hallway between the high dependency unit and the special care unit; conditions that some might venture so far as to say not ideal or conducive to producing breast milk months ahead of when my body had anticipated on doing so and compounded by the lack of physical contact with the infant for whom the milk was being expressed.
If it were not for the support that I received from the other families who also had infants in the Neonatal Unit, I do not know how I would have survived those traumatic 3 months which saw my world turned on its head. They understood my journey, they felt the same fear and pain that had flooded my heart and they cradled me when my tears just wouldn’t stop flowing.
Parenting a micro-preemie does not come with a manual and can often be as individualized as fingerprints.
Even though the unit was cramped with little space between incubators, with not enough chairs for parents to sit next to their infant and no facilities for families to stay in the hospital while their infant was being cared for, the almost familial like interaction between the parents of the babies was crucial for all our survival. In neonatal circles there have been discussions in recent years about the future of Neonatal Unit design with suggestions of moving from open bay units to single room units where families would be isolated from other families. Thankfully this discussion has been tempered by research which recognises the invaluable benefit of families supporting families on the unit; a support which often transitions to the community with families continuing to stay in contact with families they have met in the unit.
Prior to Amelia’s birth I could never have anticipated the upheaval that it would bestow on my life. Preterm birth robs you of your dreams and expectations, it propels you into a world where a crash course in high tech life-saving equipment and medical jargon are compulsory in order to ‘get to know your baby’ and it displaces parents from their natural role as primary caregivers.
I vividly remember those early days when Amelia’s life hung in the balance from hour to hour and when I could never have visualised a time when she would be maturing into the beautiful young lady she is today. Thirteen years on, there still lingers an element of uncertainty inside of me; as if a part of me still feels that she is on loan!
If it were not for the support that I received from the other families who also had infants in the Neonatal Unit, I do not know how I would have survived those traumatic 3 months which saw my world turned on its head.
Preterm birth arrived uninvited into my life and forced me to dig deep, sub-consciously or otherwise, to locate an inner strength that would serve to underpin our journey to date. Setting small achievable goals or dreams sustained my spirit in the early days. If Amelia gained a few grams of weight or her oxygen requirements decreased, I celebrated as if she had won Olympic gold. When things were not going so well, I learned to readjust my goals and expectations and focus on the here and now and identify a positive from each day, even if the only positive was the fact that she had made it through another day; over time I came to appreciate that not all positives need to be steps forward… sometimes standing still is something worth celebrating.
Every one of us has different coping mechanisms in times of crisis and for me knowledge and involvement, were my cornerstones. If I had the necessary knowledge on board regarding Amelia’s condition, I was best placed to process the situation and act appropriately. By informing Amelia’s medical team of my expectations with regards to receiving updates on my daughter’s condition, not only was I facilitating my ability to comprehend the ever evolving and changing picture but on a much deeper level, I was ensuring that the mechanisms to sustain me throughout the journey were in place.
The gratitude that parents feel having survived the journey in the Neonatal Unit, where every shred of the normal parenting process has been deconstructed over many months, overshadows the reality that the security net of the Neonatal Unit is about to be withdrawn and from here on in, parents are in the driving seat. Re-entering the real world with a medically vulnerable infant and learning to manage their ongoing medical and developmental challenges—in addition to addressing the psychological impact that the journey has had on the wider family unit—can prove overwhelming.
Setting small achievable goals or dreams sustained my spirit in the early days.
My one priority once we were discharged home from hospital was to protect my child at all costs (a task I never felt properly equipped for) which often meant that my needs got neglected; an unconscious attempt to punish myself for my failings, perhaps, or simply, there were not enough hours in the day to attend to both of our needs.
Motherhood morphed into a multi-disciplinary role with me as the carer, the physiotherapist, the speech and language therapist, the occupational therapist, the feeding therapist, the psychologist but rarely just the Mum! Hours rolled into days, days rolled into weeks and weeks rolled into months; an isolating existence on numerous levels, as I struggled to protect my daughter from the potentially fatal Respiratory Syncytial Virus and find a healthy balance between my working life as a Medical Underwriter and managing an infant with feeding, sleep, developmental and physical challenges.
At every juncture I met obstacles, from a public lack of awareness about the life-long consequences of preterm birth, to accessing interventions that would help Amelia manage her developmental difficulties to micro-managing her education pathway to ensure that the system adapted its teaching methods to facilitate the way that Amelia’s brain processed information.
Preterm birth arrived uninvited into my life and forced me to dig deep, sub-consciously or otherwise, to locate an inner strength that would serve to underpin our journey to date.
Fast forward to 2019 and life is still busy as Amelia transitions from the primary school education system to the post-primary system. As she matures, she is beginning to take greater ownership of herself as a person and is slowly developing skills that will help her embrace and manage her differences going into the future.
Having faced my worst fears and survived, learning to transform my failures into teachings and armed with my experience and the motivation to ensure that no other family would have a similar journey to us, I founded the Irish Neonatal Health Alliance (INHA), a patient advocacy organisation and charity.
The activities and remit of the INHA have expanded and evolved in tandem with our journey addressing the various system deficiencies that I have encountered as Amelia has grown. The five pillars that underpin the activities of our organisation include Support, Awareness, Education, Advocacy and Research.
Knowing that my efforts and endeavours have made a tangible difference to people’s lives has been a critical component of my surviving this rollercoaster ride. There have been days over the past 13 years when the rollercoaster has definitely been travelling faster and more furiously than others but those are balanced by days when the ride slows to an acceptable pace and dare I say it; I have the opportunity to admire the landscape. I’ve learned to appreciate the enrichment and enlightenment that preterm birth has brought to my life. ■
