Amelia's story

8th October 2006

After 13 weeks of unexplained bleeding and several emergency room attendances, my labour commenced on day 6 of week 25 of pregnancy. Due to her breech position, Amelia was delivered by emergency Caesaerian-Section 5 hours later weighing  780grams. She required resuscitation at birth, was administered the life-saving surfactant for her lungs, was immediately intubated and taken to the Neo-Natal Intensive Care Unit (NICU) where she would spend the next  77 days. And so begins the journey of endless hand washing to the point of drawing blood, alarm bells ringing in my dreams, tiny babies clinging to life by a thread and the parallel world of the Neo-Natal Intensive Care Unit.

The initial days of Amelia’s life were fraught with uncertainty, fear, loss and a bizarre sense of jubilation. Despite the frail picture before us in the incubator, we opted to concentrate on the only positive fact we could draw from the grave situation we found ourselves in - the survival statistics for children born at her gestation-50% (with/without a certain degree of disability).

Amelias condition remained critical for 7 weeks during which time she suffered from a Patent Ductus Arteriosis (heart defect) which was medicated and closed over, lung secretions which required removal several times a day, several resuscitations, many infections, anaemia and non-functioning bowels. Her fragile skin bled when touched, she was ventilated for 4 weeks and unable to tolerate expressed breast milk for 4 weeks . She required 8 blood transfusions, required phototherapy, suffered from Bradycardia and Apnoeas , was administered caffeine to stimulate her brain and her prognosis was uncertain for quite some time.

As a first time Mother all my expectations of motherhood had been shattered; I had lost over 14 weeks of my pregnancy and I was unable to perform the most basic task of motherhood-to hold my precious baby. The only care function that I could execute unaided for her in those early days was to express milk every 3 hours and that task had to be completed  by the nursing staff who tube fed my daughter for 10 weeks. Being discharged home from hospital 5 days after her birth was the most unnatural feeling for us as a family as we were leaving our little treasure to arrive home to an empty house. My partner John and I spent every waking hour at the incubator and were rewarded by Mother Nature after two weeks, as we witnessed our daughters fused eyelids open and view the world that had been transmitting sounds to her tiny brain for the previous 2 weeks.  One of my cherished memories from the NICU is that we were the first people that our daughter saw as she opened her eyes to this world.

After 3 weeks I was allowed to hold my daughter and despite the alarms, machines and tubes, it was my first proper experience of motherhood. Amelia went on to contract MRSA and required isolation and barrier nursing which isolated us from the very important “family” that we had grown accustomed to in the unit. Little did we realise but the friendships formed with other parents whose children were in the NICU at the same time as Amelia would become an integral part of our lives in the years to come.  For a further 6 weeks Amelia remained on CPAP (Continuous Positive Airway Pressure) and finally after several steps backwards, many nights of watching her fragile life hover on the precipice of life and death , she progressed to breathing unaided- a goal that even amazed the medical team who had expected her to be discharged home on oxygen.

7 weeks into Amelia’s hospital stay her consultant offered us the first glimmer of hope that our daughter was going to survive her early arrival. The immense relief at hearing the words “we think its ok for you to start decorating her nursery” negated all those frantic nights of terror and heartache when we wondered if our daughter would see the dawn.

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Amelia was discharged home on Christmas Eve 2006 and remained on an MR10 apnoea monitor for 5 months. Immediately the reality of caring for a premature baby was all too apparent- the feeding difficulties, the reflux, the endless hospital appointments, the apnoeas, RSV (Respiratory Synctial Virus), the worry about illness and developmental issues but primarily the loneliness of raising a premature child and the sadness at the loss of the remainder of my pregnancy, the initial bonding with my baby and being a normal family.

The unnatural, surreal and oftentimes frantic world of the NICU for alls its faults had provided us with a comfort, reassurance and normality which wasn’t available in the home environment.

5 years on and Amelia has undergone physiotherapy, occupational therapy and speech therapy. She continues to suffer from Chronic Lung Disease as a result of not receiving steroid injections prior to her birth. She developed a haemangioma on her left foot shortly after birth which has left her foot mis-shapen and tender. Consequently she has lost toe nails and her foot is very venous and discoloured and  has an increased tendency to bleed. Her limbs are still hypertonic and her balance is compromised by her prematurity but she functions as a normal happy 6 year old little girl oblivious to her incredible introduction to the world, who loves ballet, singing and playing princessses. Every milestone she reaches is one step further from NICU, her battle to survive against the odds and the heartache and pain of our introduction to parenthood. Every day that Amelia shares with us is a cherished memory and serves to push the early painful memories of her birth further into the recesses of our minds.

Premature birth has a profound affect on the family unit but thanks to the incredible friends we made in the NICU, who themselves were battling their own survival wars oftentimes with heartbreaking outcomes and the tireless efforts of the medical team who challenged the boundries of medical science for our daughter,  John, Amelia Faith and I have grown in strength as a family, learnt about the fragility and preciousness of life and managed to overcome the challenges that Mother Nature put our way.

3 years after Amelia's birth I joined the newly founded Irish Charity Irish Premature Babies as their Family Liaison Manager with responsibility for overseeing the Buddy System, Organising our Parent Support Network, Liaising with Health Professionals and engaging in Advocacy and Policy Making activities. Irish Premature Babies fills a very important niche in the Irish Health System by offering support to families with premature children and promoting the welfare of such families.My medical background as a Medical Underwriter, my experience as a mother of a premature child and the incredible network of professionals and families that I have built up since 2006 lends itself enormously towards fulfilling the requirements of my role in the organisation. The outlook for parents in Ireland who have a premature child is so much brighter than it was for my family in 2006. Now there is an organisation that can guide parents on their premature journey, offer assistance to families in need and campaign for improved services and standards on behalf of the 4000 families who's babies arrive too early each year. Thanks to my daughter Amelia Faith I am proud to be part of that organisation and part of the voice of change in Ireland.


Special Thanks
EFCNI thanks the Irish national parents' organsation for this parent story. For more information please visit Irish Premature Babies www.irishprematurebabies.com

 

More parent stories can be found here:
www.babyfirst.com

More video parent stories can be found here:
www.babyfirst.com

 

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