Everyone with a premature baby has a different journey, writes Conall Ó Fátharta, who looks back at his baby son’s courageous battle for life.
MY son Éanna was born on August 11, 2016. For most people, the day their first child is born is one filled with joy and laughter. You get to meet the little person you created, you enjoy the congratulatory texts and calls. You prepare to go home and start your life as a parent.
When I sat gowned up in the waiting area of the delivery room, I had none of those feelings. I looked across at the one other man waiting to go into his partner. I saw nothing but excitement and happiness.
We spoke briefly. I tried to mask my feeling. I had just one — fear. Just before I was called to go in, I started to feel panic. Thankfully, I was alone at that point.
The reason for this was simply a matter of the calendar. This was 11 August. My son was not supposed to be born until 19 November. You don’t get congratulations when your baby is born that early.
The night before we signed forms to include our child in prematurity research projects being carried out in the hospital. I signed other forms I don’t even remember.
We were told there may be nothing they could do for our child when he was born. I was told I may not be permitted to be present for the delivery. I rang my parents and Bláithín’s mother. I told them their grandchild was going to be born extremely premature the following day.
I slept in the car.
I was there for the birth. I saw nobody other than my partner Bláithín and the two anaesthetists. Everyone else was behind a screen and there seemed to be a lot of them. Their silence worried me. Everything seemed so quiet. Serious. It was.
Éanna was born at 11.34am. He weighed just 790g (1lb 11oz). I was permitted to see him and touch him very briefly before he was rushed to the neonatal intensive care unit at Cork University Maternity Hospital.
To my shame, I barely remember that moment. I felt weak. I was afraid to see him, afraid of what my reaction would be to seeing such a small baby.
I remember a man telling me that his weight was good for a baby of his gestation. I later learned he was the man who resuscitated Éanna after he was born and would be his main consultant.
He came to see both Bláithín and I later that day and took us through what to expect. I was full of questions. As a journalist, I like answers. Definites. He didn’t have any for me.
He told me Éanna had had a good first hour and that’s where we are for now. Hour by hour. Hopefully, we would get to day by day, then week by week.
Premature babies usually have a good start but it was the following few days that things change. He also told me the survival rate for a child born at 25 weeks was between 60% and 70%.
I saw Éanna for the first time just over three hours later. I didn’t get to hold him until five weeks later. I was petrified. Even watching what was involved in taking him out to hold was a nerve-wracking experience.
He was on a ventilator and a bundle of tubes and wires. You couldn’t see his face. He lived in a box that I spent hours on end looking through. I learned how to change his nappy through an incubator. It was the first nappy I ever changed.
I sent my sister a text: ‘I’m just worried that we will get through it all OK. It’s day by day really’. That last sentence is the most important thing I learned about having a very premature baby. You simply have to take every day on its merits.
Looking back, ignorance was bliss. I had no idea what to expect. I lived for the consultant’s rounds, which happened twice a day every day, and weight checks which occurred on Sunday and Thursday.
“Uneventful” became a word that made my day. If your consultant was happy, your day was a good one. If he was concerned or mentioned a problem, your whole day focused on that.
It was the same with the weight checks. When your baby is so tiny, any weight gain is a huge boost, any loss is soul destroying.
It is the routine that gets you through and out the other side. You focus narrowly on the information that sustains you — the positive and the negative.
One gives you hope, the other determination. That focus gave me the ability to keep going and not become overwhelmed by the enormity of what was happening.
People always asked me how I was sleeping. The truth is I slept like a log. My days were going from the hospital to work, to the hospital, to home, to bed. The only time I didn’t worry was when I was asleep. It was the only release I felt from that pressure.
Éanna was in hospital for 116 days. He was in intensive care for eight weeks.
In that time he was on and off a ventilator three times, had a blood transfusion, a lumbar puncture and all manner of other medical interventions most of us never experience in a lifetime.
He stopped breathing in my arms and had to be bagged to be brought around. We had phonecalls in the middle of the night to say he had to be intubated after having a setback.
Yet we had good days. The days his oxygen requirements were lowered, the day he was moved out of an incubator and into a cot when his lines were removed. Little milestones. We took thousands of pictures. I look back on them more now than I did when we were in hospital. I find them more upsetting now. It feels like a different time.
Everyone who has a premature baby has a different journey. We were lucky. We got to take our child home. Not everyone does.
It would take another article to do the hospital staff justice. It’s a cliché but I can say with absolute certainty that we owe them everything and will never forget the care and love they gave not only Éanna but us.
I told Éanna to “keep fighting” every single night I left him to go home. I hoped if he did that he would get to come home with me. He did on December 2, 2016.
I will spend the rest of my life fighting for him.
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