Noah O'Donoghue

4 Days to Live

Ed and Caitriona's little boy Noah was diagnosed with anencephaly after a 12 week scan

A few minutes more with baby Noah

It had been an extraordinary week.  We brought two new baby boys into our family on the Monday morning, Ethan and Noah. Their mother, Caitriona, had to endure a caesarean section and the physical trauma that goes with that.  Now here we were on a damp autumnal Saturday morning having a private duel outside of a graveyard with a small white box  rather than with pistols or swords. I emerged victorious.  Caitriona had fought to keep Noah, to hold him for a precious few more minutes. I could not see the point in prolonging our suffering.  Noah was gone.  All we held were his mortal remains.  He drew his last breath in our arms, desperately and defiantly, on Thursday evening.  In was time to commit his remains to the earth in amongst his antecedents who lay before him.  And so we walked across the concrete and the grass, stumbling between the graves, Noah’s white coffin wrapped under my right arm with Caitriona’s arm intertwined with my left.

Noah was diagnosed with anencephaly

We knew that this day awaited us, we had known for 7 months.  Caitriona and I travelled to Cork for the perfunctory 12 week scan.  It had a processional feel to it.  This was Caitriona’s third pregnancy and I accompanied her as I had done on the other two occasions.  We could not have anticipated the emotional roller coaster that we were about to step onto.  Thankfully, we had the good grace to encounter an experienced sonographer.  She had the presence of mind to couch her observations in a way that tempered our expectations without suffocating our hopes.  The sonographer confirmed that Caitriona was expecting twins but hesitated before continuing to relay her observations.  We had about 3 seconds to get excited about expecting twins before the sonographer announced that one of the twins had a problem. She was painfully aware of the dilemma that was unravelling. One of the twins had a condition that was likely to affect its ability to go full term, be delivered and live for anything other than a few days at best.  We travelled home with a heavy load, with only the faintest of delusional hopes that a consultant-led scan one week later would yield a more optimistic prognosis. It didn’t.  One of our boys, Noah, had anencephaly.

Caitriona soldiered through the pregnancy as best she could.  She had to prepare for the birth of a new child and the guaranteed premature death within days, if not minutes, of another.  I feel as if she started to grieve for Noah from the moment we received his diagnosis while having to work against this instinct in order to nurture and support the child that was destined to survive.

Me and my twin brother Ethan...

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Emotional support

I find it strange how something that you never were aware of arrives at your doorstep to challenge you to your core.  I’m qualified as an engineer.  I’m not too bad at mathematics.  The odds of a pregnancy being affected by anencephaly are 1 in 1,750.  The odds of it affecting a fraternal twin pregnancy are……………….god knows.  It’s very rare, there aren’t any figures available.  Your reflex reaction is to go online to learn more about this condition.  I managed to avoid this which was no small mercy and very much thanks to the great advice and support we received from the support services at the hospital.  But still I wondered.  What will this child look like?  Will I be able to hold it in my arms and love it?  How long will he live?  Will his siblings and grand-parents get to see him ?  At a rational and abstract remove I did not trust my paternal instincts.

The weeks and months passed by at what seemed an interminable pace punctuated by the necessary scans at the maternity hospital.  We were open with family and friends as to the nature of Noah’s condition.  The conundrum was that his condition’s rarity and complexity undermined people’s ability to express their feelings towards us.  Support and understanding from those nearest to you is a lifeline in a situation like this but there were times where a lack of awareness led people to utter words that only served to sadden us.  At these times we needed to push past the words and focus on the intent behind them.  Everyone did wish us well, prayed for us and sought to comfort us to the best of their ability.

As the twins due date approached ever closer it became more and more difficult to deal with the emotional strain that was building inside.  At Caitriona’s suggestion I went to see a counsellor.  This was an incredibly important step.  I feel that men, more so than woman, are inclined to suppress or bottle up emotional strain such as this.  We feel the need to subscribe to the cultural stereotype, a need to project strength and resilience to the external world.  Holding on to such intense pain and suffering infects your relationship with yourself and others.  I learned to embrace the emotions that were being suppressed, to let them pour out of me.  While I may not have developed a sense of acceptance around Noah’s fate at least I could be present to work through it with Caitriona rather than preoccupied with my own internal struggle.

Family and friends had begun to assemble around us to provide practical and emotional support.  The caesarean had been organised with a few weeks now.  We were steadily encircling the day that had been long anticipated.  We arrived at the hospital, Caitriona set up in the room and patiently submitted herself to the final questions, observations and chit chat before being taken downstairs to theatre.  The intensity of the moment came into sharp focus while I was sitting there on my own waiting to be called in to the operating theatre. I could not distract myself any more.  This was it.

Noah was made of stern stuff...

The surgical and nursing team, a small blue and green army were flitting hither and thither.  I expected the professionalism and the expertise that was manifesting itself around me but it was their humanity and warmth that had the greatest impression on me.  And so it was to the bizarre cacophany of beeps, pings, elastic conversations, suction pipes reflected by the stainless steel, sterile plastic equipment and marmoleum floor that Noah & Ethan were delicately delivered into this world.  Noah was delivered first, crowned with cotton hat to conceal the disfigurement of his head and hastily put into my arms.  Caitriona, immobilised on the gurney beside me, turned expectantly to see him.  He got this far, he was breathing, he was with us.  How long could we expect him to stay with us.  Almost incidentally, his fraternal twin Ethan declared himself to the world.  Next to the frail Noah he seemed almost giant like.  A friendly slumbering giant at that.  The countdown had begun……….it was the beginning of the most precious 80 hours.

Just give me 40 winks.. being born is hard work!  Mummy loves me... Daddy too!

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The chaplain who had been inconspicuously waiting outside of operating theatre came in to meet us.  Noah had been struggling to get breathing properly and his colouring told us as much.  A generous application of cool holy water from the chaplain seemed to be the catalyst that his heart needed to kick into gear.  After the initial relief of a successful delivery I had enough confidence to head outside to the reception area where our families and closest friends were waiting for news.   An impromptu rota was agreed for meeting Noah.

It's busy work, entertaining all these visitors!

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Noah was made of stern stuff.  Four days and three hours he stayed with us.  There was a constant stream of family, friends, colleagues, neighbours and relations to see this beautiful little boy.  So it was that during the day we had to share him with everyone while at night he was ours. I slept on the floor next to Caitriona’s bed on each of the nights.  It was a relief to find him alive each morning but there was no denying that after the first 24 hours his condition steadily declined.  He didn’t suffer, he didn’t cry.  Once swaddled and crowned with what seemed an inexhaustable supply of cotton hats all that was left of him to be admired was his beautiful facial skin, perfect lips and the most delicate but perfectly formed hands.  I was honoured to be the person that kept his lips moist and clean

Orla loved giving me cuddles...

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One of my most abiding memories is the perceptive comment that my mother made a few months afterwards.  “He was always surrounded with love, he was always held in someone’s arms for the entirety of his life”.  And this really is the reason that I have decided to share this intimate gut wrenching private experience.  At the beginning of a difficult pregnancy our critical thinking faculty, our abstract and rational thoughts could never have foreseen the bitter sweet richness and beauty of this life experience.  We could never have foreseen that, despite the grief and subsequent emotional turmoil, Noah’s short life would resonate so profoundly with all who heard his story, especially those who experienced it first hand at the maternity hospital. 

Having a bit of a party for us two newbies...!

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"Incompatible with Life" - the insanity of this expression

As humans we have a hardwired capacity to perceive the risks and fears of the challenges before us while we have a near non-existent capacity to visualise the wisdom and positive experiences that these tests can bring.  We work in pyschological time, in the present and the future, overlaying our prejudices and our fears onto the situation that we find ourselves in.  We do not focus on what the present moment demands and all too often loose our own humanity in the process.  Our Noah had a condition that was ‘incompatible with life’.  Even typing this now I feel a mixture of absurdity and outrage.  Does anyone ever stop to recognise the insanity of such an expression. Nothing in Noah’s time here on earth was incompatible with life.  It was life.  Life is something that is manifested by over 6 billion humans on this planet every day.  Life is life, nothing is incompatible with it.  That is the message that I want to convey.

The abortion discussion is gathering momentum again in this country.  My purpose here is to let you know from first hand experience that the worst prognosis for an unborn child does not mean that the worst outcome is a matter of course.  Yes, its bloody complicated, its heart wrenching, its soul destroying and painful but it can also be life affirming, life changing and bring out the best in all of us in ways we cannot begin to imagine.  Was Noah ever conscious ?  Did his anencephaly mean that he did not truly exist as a person ?  These are not questions I have asked personally but rather questions that were put to me.  They were the wrong questions.  And that’s the thing, the key is to ask the right questions.  Only by posing the right questions can we ever hope to reach the right conclusions.  That is my hope for any future discussion on abortion in this country.  If we choose to replace fear with love, scepticism with hope it is possible to transcend the most despairing of situations.

Thank you mam and dad for everything you've done for me...

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In memory of Noah by Ed O'Donoghue

Did you get me something, ah so cute
We’ll never know the child, nor the boy
The teenager, the man
Just a few kisses, just a few hugs
Not enough to show our love
The shortest of stays but never gone
An eternal birthday while we draw our breath
Comfort above and below
Blossom

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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.

Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953