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Tom’s Journey

Baby Tom

On Monday, July 27th, our world changed forever. Our baby was diagnosed with Trisomy 18 at the 20-week scan. We were numb. I remember lying there hearing the words but almost zoning out thinking this cannot be happening to us. We hadn’t planned on finding out the sex of the baby but Terry asked. The sonographer told us our baby was a boy.

In the car on the way home, it was so hard to reconcile the fact that I could feel him moving yet we were told he was going to die. Our first instinct was to give this little guy a name. We decided to call him Tom. By naming him, as parents we hoped we would give him a strong sense of belonging. For us, his life started that day because we knew he would have a very short life if any outside of the womb.

After we had gotten over the initial shock, we very quickly realised that we had two choices: we could spend Tom’s life feeling sad and miserable or we could celebrate it. I didn’t want Tom to feel the sadness. We had an overwhelming desire to breathe as much love and life into him while he was with us. It was very much a feeling that this little guy isn’t going to be around for a long time so we are going to show him a good time. We wanted him to feel an overwhelming sense of love and happiness.
Tom was born on October 30th 2015 and to everyone’s amazement he lived for 11 wonderful days.

From the moment we got Tom’s diagnosis till the day he passed away and still to this day, the staff in the Coombe have been incredible to us. We were treated with incredible dignity and compassion by every staff member we came into contact with whether they were medical, administrative, support or auxiliary staff. There is a strong compassionate ethos that is almost innate in all of them. Everyone we met was always up to speed,from our obstetrician, to the bereavement midwife, paediatricians, neonatal nurses and beyond. It was very evident to us that there is excellent communication behind the scenes which is incredibly important and reassuring for parents like us.

The care Tom and I received, both in pregnancy and beyond, was amazing. Our obstetrician Dr Michael O’Connell gave us an enormous sense of security. We knew we were in safe hands. This took a lot of the worry off us and allowed us to focus on the present and be present with Tom. Dr O’Connell and his colleague whom we saw while Dr O’Connell was away had the perfect balance of practicality and compassion. The neonatal nurses looked after Tom so well. I stayed awake with Tom for the first 72 hours of his life and I always looked forward to seeing the nurses coming in to feed him every three hours. They always came in with a smile on their face.
The paediatricians known to us in pregnancy and present at Tom’s birth treated him with the utmost concern and dignity. The emotional support we received from the bereavement midwife was phenomenal. She was very much our “life support”. She was with us every step of our journey and at our lowest points she carried us through. It is testament to her and the care we received from her that our first instinct was to ring her when Tom died. To lose your baby in your arms is indescribable but to hear her voice on the other end of the phone gave us strength. She continues to give us that strength.

We never felt rushed at any of our appointments or scans. We were encouraged from the beginning to embrace our time with Tom and start memory-making. The foetal medicine doctor and her midwife manager always made sure we had plenty of time at our scans. They got plenty of clear screen shots and photos of Tom. The bereavement midwife introduced us to the idea of the memory box early on and she made sure we left the hospital with our memory box full of keepsakes from Tom’s time in the hospital, such as locks of his hair and his footprints. It was incredible to have people like the bereavement midwife and the chaplains looking after us because of their previous experiences they simply knew what to do. They put us in contact with the charity “Now I Lay Me Down To Sleep”. Thanks to our wonderful photographer we have a picture of our three boys together, one of our most treasured possessions. Tom’s name is also in the book of remembrance which we are encouraged to visit in the Coombe on his anniversary each year and we attended and will continue to attend the annual remembrance service.

When Tom was born and the subsequent days we spent with him in the hospital were magical.
It was as if time had stopped and we were living in a bubble.
We were cared for as a family unit throughout

We never felt we were alone on this journey. The staff helped make an extremely difficult time an incredibly special time. When Tom was born and the subsequent days we spent with him in the hospital were magical. It was as if time had stopped and we were living in a bubble. We were cared for as a family unit throughout. The three of us stayed together day and night on a ward away from all the normal healthy crying babies. We looked forward to our daily visits from doctors, nurses, the bereavement midwife with her boundless energy and positivity, the chaplains and the paediatricians. They very much became Tom’s second family.

When we left the hospital with Tom, the Coombe were very much still involved and put us in contact with an array of community supports and agencies that supported us to have Tom at home for the short but very precious six days. When we read the National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death, we wondered what was new about them as we received all and more than the recommendations outlined. At their launch, we realised that the care and support we received in the Coombe was not standard practice throughout hospitals in Ireland. We were shocked. At the launch, we were introduced to the Minister of Health who went out of his way to Little Tom Fahy, pictured during his very short life, during which time he brought immense joy to his loving parents. meet with us bereaved parents. We found him to be very compassionate and were delighted when he told us that he had already begun the recruitment of bereavement midwives nationally and that they would be in post by the end of the year. It is wonderful to see that the Minister recognises the need for such vital support for bereaved parents nationally and that your postcode should not determine the care you receive especially when you are at your most vulnerable.
The staff in the Coombe played such an important role in Tom’s life. They cared for us and supported us. They shared our journey.

For more information about the HSE National Standards for Bereavement Care: www.hse.ie/bereavementcare