The smallest miracles have the biggest effect

Blaithin Kiernan and Conall Ó Fátharta with their son Éanna at their home in Cobh, Co Cork, at Christmas 2016. Picture: Dan Linehan

You don’t get balloons and congratulations when your baby is born as prematurely as ours was, writes Conall Ó Fátharta.

Nothing prepares you for being the parent of a child born extremely preterm. You simply put life on hold, trust in medical science, and hope that your child is strong enough and lucky enough to survive.

My son Éanna is now just over two years old. I look at him walking, running, talking, colouring, and I can barely believe it.

Every time he gives me a hug I remember that he was once small enough to fit in the palm of my hand. The feeling I get when I see him and hold him now is beyond words but I feel it in the core of my being. It’s a love that almost hurts.

Éanna was born on August 11, 2016. He wasn’t due to arrive until 19 November, 2016. He arrived into the world at 25 weeks gestation and weighing just 790g (1lb 11oz).

He fitted into all the brackets you don’t want to be born in — extremely preterm and extremely low birth weight.

I had about 12 hours notice that my child was going to arrive long before we had planned. My partner Bláithín had early pre-eclampsia, which deteriorated rapidly the night before Éanna was born.

I was at home when Cork University Maternity Hospital called me to come in. Bláithín was in the high dependency unit.

The staff was struggling to control her blood pressure. There were a lot of people in the room.

A consultant told me that it would not take much change in her condition for staff to deliver the baby that night but that the hope was to do it in the morning.

One way or another, I was told, this baby will be arriving on the following day.

That night I signed a lot of forms. We were told about the obvious risks associated with a child being born this early. We were told that the child may not survive.

Truthfully, I was more worried about Bláithín than my unborn child. All I wanted was for her to be OK. I slept in the car.

I was present for Éanna’s birth but saw nothing. It’s not a happy memory. I sat outside gowned up and was told I may or may not be called in for the birth.

It is perhaps the only time in my life where I felt genuine terror and panic. I thought of everything that could go wrong. I thought about losing Bláithín.

The delivery was marked by silence. The room was full of people — most of whom I never saw as they were behind a large screen.

Everyone spoke in low, hushed, and serious tones. I wanted someone to say something. Children born at that gestation don’t cry. They don’t make a sound.

I only knew Éanna had been born when a woman in surgical mask poked her head around the corner, touched my arm and asked me had anyone told whether it was a boy or a girl.

The first time I saw Éanna was about 30 seconds later as he was rushed to the neonatal intensive care unit. I briefly was permitted to touch him lightly.

People talk about the love you feel when you first see your child. At that moment, my emotion was not love, but fear.

He frightened me. He was so small I could barely process his existence at that moment.

A man told me his weight was good for a baby of his gestation. This man would be our consultant for the next two and a half years.

He saw both Bláithín and me later that day and took us through what to expect. I was full of questions but he had no hard and fast answers.

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.

It remains the best advice I could give to anyone going this experience. You simply have to live day by day.

I sent my sister a text: “I’m just worried that we will get through it all OK. It’s day by day really.”

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.

Our lives revolved around routine. I went to the hospital, then to work, back to the hospital at lunchtime, back to work, back to the hospital after work, then home and to bed.

This was life for months on end. I slept like a log. It was the one release from the worry and pressure which dominated every minute of every day.

Éanna was in the 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 phone calls in the middle of the night to say he had to be intubated after having a setback.

We lived for consultants rounds, which happened twice a day, every day. If the consultant was happy, your day was made. If there was a problem, it consumed you.

Weight checks happened on a Sunday and a Thursday. Every weight gain was a huge boost.

We had a lot of bad days but also good days. The day we left intensive care, the day he came out of an incubator and into a cot where we could hold him, the days his oxygen requirements were, the day his lines were removed, the day his feeding tube came out.

We were the lucky ones. So many things can go wrong when a child is born very early. Éanna managed to walk that fine line and come through the other side.

In our time in the CUMH neonatal unit, others were not so lucky. Their children didn’t make it home.

You don’t get balloons and congratulations when your baby is born as early as Éanna was. People don’t know what to say.

Those moments came for us when Éanna came home with us on December 2, 2016.

I don’t really have the words for what Blaithín and I owe the staff at CUMH — everything. Our health service often takes a beating in the media.

During our journey, not only did the staff care for my son with a level of love that has to be seen to be understood, but they also cared for us.

They fed us, counselled us, dealt with our good moods, bad moods, and our tears.

Éanna is now a happy-go-lucky two-year-old and full of life. Just a few weeks ago, on November 28, we were finally signed off by our consultant.

I simply shook his hand and said: “Thank you for everything.”

It seemed too small a sentiment but the right one.

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