18th April 2017
Following the amazing response to the touching and heartbreaking story of tiny Tom Fahy, who was diagnosed with Edwards Syndrome in Pregnancy, midwife Brid Shine shares her experiences of her time with Tom and his family.
The Fahy family arrived to my office like most families who find themselves in this situation - devastated, shocked, griefstricken and fear-filled.
Our practice in this area of work is to sit with parents at their time of unknowing, to create a space where difficult emotions can be expressed and held in a deeply compassionate manner utilising the humanistic and existential model of care. Once fears are explored and guidance on the different care practices that would support them at the different times outlined, emphasis is always placed on the ‘here and now’ - Their baby ‘Tom’ alive and growing in utero, with support on establishing attachment emphasised. In the uncertainty of ‘lifespan’, this aspect of care is important. What was unique about Tom’s mother was this is where she was always, barely audible to all the other stuff, she would repeatedly say ‘but he’s here now’. It was both human, and touching.
One quiet Friday afternoon as we in the bereavement team were about to head home, Tom arrived. He managed to pull us back in through the ever ‘revolving door’ of healthcare work. The one that’s led by heart more notably than head. Head tells you it’s time to sign off, heart tells you to go back in! At birth, we tried to make Tom cry, to record this on his Dad’s phone but the young paediatrician just nodded sadly at me that it would not be possible. Alarmed at his grey colour and poor tone, I whispered to the healthcare chaplain to christen him quickly. His parents had brought special water from the Jordan River and that was used. I went at the parents’ request to relay the update of his arrival to his extended family in the waiting room. In sombre tone, I told them of his arrival, that he was here but he was very weak. Apparently I looked so sombre thaupon leaving them, the family considered he might even have passed.
But these little babies are hard to gauge, for 10 to 15 minutes later when I returned to see them again, here was Tom, bright-eyed, pink, ‘crying’ and surrounded by all his extended family and being photographed! I thought this little fella was incredulous. Teasing the chaplain, I told her the speedy christening had obviously resulted in divine intervention! Miraculously Tom’s condition continued to improve with early morning phone calls to the night staff over the weekend, to quietly enquire if he was still here. By Monday, we all concluded that he was a potential ‘go-home’ baby - much to the delight as well as normal anxiety of both his mum and his dad.
Memory-making had begun in pregnancy, intensified at birth, but the day of his departure for home - picturing his tiny little stature in the car seat - was the happiest moment of all. His proud parents sidled around the Hospital, saying goodbye to all who knew him (the whole hospital it would seem at this point!) showing him off. All the while, I remained anxious to get them into the car, fearful that he may not make home. The ‘known’ uncertainty of a lifespan has the ability of what I call ‘magnifying’ life. This is what Tom’s family chose to do... to enjoy every waking moment with him surrounded by family who were all drawn in. As I saw them off, I had of course no idea that six days later how we would meet again in that same car park slot, under different circumstances.
Though they went home to a wonderful team of community supports, from the specialist Palliative Care team in Crumlin, the outreach nurse who met them in both the hospital and home, their GP, Public Health Nurse, local Palliative Care team and availability of the infamous Jack and Jill nurses, they were keen to return to a follow up appointment with Tom’s Paediatrician in a few days, as they lived local to us. Each day came a reassuring text as Tom’s Mum gleefully relayed reports of Tom ‘peeing and poo-ing’ like all babies. She kept us all in check and kept us smiling. On the eve of their return visit, I got a lovely text to say that Tom was looking forward to his date with his specialist midwife. Again lots of smiles at the humour of life, as I kept reflecting the speed of his christening at birth?!
The following morning, as I prepared my office for the unusually early visit of an outpatient appointment, the phone rang. In between sobs, I heard ‘He’s gone...He’s gone...’ from Tom’s mother. Always the doubting Thomas, I encouraged her to lift him, rub him, stimulate him as I hoped in my heart of hearts that he may be having an apnoea episode. But the expressed emotion on the other side of the phone indicated the unfolding sadness of his passing, and how he had taken us all off guard.
Aware that his dad was driving, I advised them to put on the hazard lights and pull in off the road which they dutifully did, into an Esso garage on the Palmerstown Road. I was by now on speaker phone endeavouring to guide and calm them as I advised them just to simply ‘be with him’, to continue to talk to him, to say any last words they needed to say. Although this came across as a very calm ‘in control’ kind of voice, on the other end of that phone line, I stood alone in my office with tears in my eyes as I heard the words ‘I love you my son’ from his dad. It was one of the most heartbreaking, yet tender moments I ever shared (On speaker phone!). Occasionally they would ask if I was still there and I reassured them I was.
What unfolded next is a story that must be told. With both parents unanimously expressing their wish to continue towards the hospital, to conclude the journey they had set out on that morning, I set about arranging supports to do so. I asked for their car reg and told them I would arrange a Garda car to get them into us ASAP through the early morning traffic. I dialled 999, spoke to the gardai, explained my story and got what was I suppose a reasonable reply, ‘Ah no luv, thatll have to be an ambulance’. Pleadingly, I told them my dilemma – that if I called an ambulance, Tom’s parents would be obliged to attend to the nearest A&E where nobody would know them. I told the guard that this 11-day-old baby had been terminal and this was not an unexpected death. I then told him a small white lie -that I had a consultant paediatrician standing beside me ready to meet them on arrival if they would only oblige us just this once, on compassionate grounds. My wish was granted.
Once I heard on speaker phone the gardai had reached the family, I hung up with an urgent need to call the Paediatrician, the Chaplain and Neonatal Nurse manager of OPD and all were present in seconds. Before we knew it, the sirens announcing Tom’s arrival came to the Coombe and we met once more at the exact spot where we had seen them off days earlier. A female garda driving their car and the united loving family all huddled together in the back seat was a poignant image that has always stayed with me. Still holding some irrational hope that this was by now a very ‘prolonged’ apnoea, I had to see Tom myself to truly believe. But his ashen grey face, and lifeless body held close to his mother’s heart, held lovingly by his dad’s embrace, confirmed for the head what the heart wasn’t willing to believe.
We adjourned to my office close by, where we collectively reflected the sad events of the morning. His parents reflected that they felt he had brought them full circle, they had come to this office upon diagnosis and now having had a short lifetime they had returned to where they had started, after a phenomenal life’s journey with their son Tom. All the neonatal nurses and midwives who had met the family, all came and went with tear-filled eyes to see little Tom and his parents, as news filtered through the building. Before long, his grandparents and family who had been at his birth arrived once more. And thereafter, with the support of the healthcare chaplain, the family left to begin the funeral rituals at home. It is hard to go about normal day to day work after such a morning but the bereavement care of families with stillborn babies called to us from the Gynae ward, and so collectively we went on.
Later that evening around 7pm, having had a long day, I came to gather my belongings from my office to head home, and there outside my office door was a little parcel. A blue teddy bear, all parcelled up in cling film, around its neck was a real gold Garda Siochana medal held on a ribbon similar to an olympic medal. I thought to myself that little Tom, for all his efforts, did deserve an Olympic gold. Engraved on the medal were four words – ‘Baby Tom, Baby Angel’. I smiled and laughed heartily as is much needed in bereavement and palliative care work, and was really touched to see an enclosed card to Tom’s family, signed by all the gardai who had been involved in the morning’s events, including the garda who had taken the 999 call. I came to really understand that day that human compassion is innate in all walks of life, and I have held the gardai in very high esteem following this event. I wondered too on the journey home, how is it that stories such as these never make the headlines.
Little Tom lives on in the hearts and minds of all who met him, in particular of course his own loving family and his extended family who cared for him here at the Coombe. Deep human connections unfold in this work of healthcare that we rarely write about but it is why we do what we do, and with such heart.