The little boy with a hole in his heart

The story of Nicky Flood jnr.

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Introduction and Background to Nicky jnr

A small while ago, someone got me to care about a little boy. A little boy with a hole in his heart. I am embarrassed to admit that it took a hint or two more for me to invest the requisite time and energy to take a closer look at his story. Nicky Jnr is the name of this special two-year-old boy in question and even with the most cursory of glances in his direction, I soon detected something curious and most unusual. Nicky Jnr is possessed of a super-power. One that eludes many of us living in far less dire circumstances and with far healthier dispositions.

Nicky jnr has an iron-clad resolve and will to live.

As superpowers go not a bad one to be gifted with I think you’ll agree. You see, death first began chasing this beautiful boy in the womb and then pursued him straight into life too but has yet to catch him.

I mention caring above, and it’s a pertinent point to the story you are about to read, I think, but also a pertinent point about the dystopian world we live in too. To care about someone, or even something, takes effort and an investment of time. We often don’t look because by looking we discover an inability to look away.

Not looking when we should might help us sleep easier at night, but is it anything more than a most uncomfortable type of slumber?

One of the general anaesthetics of the modern world is a soothing kind of invisible injection. Robbing us of our ability to care properly about the realities right in front of our noses in everyday life, thieving our ability to discern the difference between important cares and unimportant distractions. We inhabit a country and civilisation where distracting ourselves away from reality has become the gold standard of passing through life.

Our phones and mobile devices nudge us towards a digital existance and convergence and further tempts us to invest most of our worries, fears and cares onto the digital road. A highway with shiny new cars buzzing by at a mile a minute with something new to feed and feast upon every second, of every hour, of every day. In turn, an irrational fear develops that if we choose to put those device down for half a second we might miss something important.

But, sometimes, as is the case in this story, nearly all of the problems of the modern Irish world can viewed from the eyes of this innocent child. If only we stop long enough to observe and care about what those big, beautiful pair of eyes are trying to communicate with us.

Initial contact and meeting the family

On Tuesday morning, I was parked in the Applegreen petrol station in Athy and called Nick Flood, Nicky Jnr’s dad, for a second time to let him know I was close by. It triggered memories of our first call last Sunday and the remembrance of an unlikely serendipity that initial phone call threw up. Nick Flood and his partner Nicola Higgins spent many years of their life together living in a village called Milltown in County Galway. My home village and town I grew up in and where I sit now to type these words about a special little boy tonight.

Later, after we finished up our three hour conversation at their kitchen table, Nick mentioned he was a bit wary and slow to make contact with me after my initial messages to him on Facebook. Many have appeared on their door-step before and not all came bearing the truest intentions. As incredible as that may sound.

To date, all of the mainstream newspapers have appeared at one time or other and even a small television crew spent an afternoon in their front living room. Fundraisers and charity events have been organised. Some good and some not so good.

A while back, a donation of a pair of Katie Taylor’s boxing gloves went to auction and were purchased yet the money was slow in coming forward and the successful bidder paid a second time for the Taylor gloves while the situation was resolved. The Sunday World produced an article on Nicky Jnr with a link to his GoFundMe page but many of the mainstream papers never followed up on their initial inquiries. So, Nick was rightly a bit hesitant when I first reached out.

Once bitten, twice shy.

McVerry Trust accommodation & Assault of Nicola Higgins.

Nicky Jnr turned two years of age on May 3rd last. But, on his delivery date into this world every medical professional and consultant in the Coombe hospital, Dublin estimated a very low life expectancy. A single, solitary day of life.

Nicky would die and die quickly they promised.

But, Nicky Jnr had different ideas. As did Nicky Jnr’s parents, Nick and Nicola, and his six brothers and sisters. Today, over two years on, and as I left the family home located in a housing estate on the edge of Athy, Co. Kildare, Tuesday afternoon, those ideas were still different to the Irish medical establishment and yet Nicky Jnr is alive and kicking. But, his future is far from rosy. Nicky Jnr knows not what tomorrow will hold, but then again, it has always been thus in his short existance on this planet.

Born with Down’s Syndrome, Nick jnr also has a hole in his heart, requires a double lung transplant, suffers hyperthyroidism and has recently had an operation to deal with cleft lip and palate amongst other complications too many to mention.

On the plus side, though, Nicky jnr has soul. The pureness of it pulsating from his eyes as he squirmed and wriggled, full of life, on the kitchen table under the watchful eye of his older sister and then later on as he sat quietly in his mother’s arms. Despite the obviousness of his many physical frailties, and the brevity of my encounters with Nicky Jnr on my visit, I was in left in zero doubt that I was in the presence of a quite magnificent soul indeed.

But, I am racing ahead of myself here, and need to slow down a touch to take you back to the very beginning of his story, a beginning that really started around week eighteen of Nicola’s pregnancy.

Nicky Flood Go Fund Me Page

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At week eighteen, Nick, Nicola and family were living in temporary accommodation - a two bedroom apartment in Athy - provided by the McVerry Trust. Now, how the family ended up in this accommodation is probably a story that will resonate with many in the Ireland of today. For, it is a story of Ireland’s working poor. The barely coping class. People not impoverished enough to qualify for social housing from the housing lists, and so struggling and working away from private rental accommodation. However, with each new foray into the private rental market the family were met with higher and higher rents and left closer and closer to the poverty line.

Nick, now a security professional by trade, and working nights to support the family at the time, eventually found himself with nowhere to turn after the landlord of their home, prior to moving into a McVerry Trust apartment, asked them to move out on short notice. With Nicola pregnant, and facing an extortionate rental market, the family were left with little by way of options. Desperate, and quite embarrassingly for Nick, he was offered temporary accommodation in one of the McVerry Trust apartments in Athy. The embarrassment emanating from the fact it was an apartment complex where his employers sometimes provided security services.

During this section of my conversation with Nick and Nicola, and sitting at their kitchen table, I could see Nick visibly struggling through this part of their story. The decision to accept the McVerry Trust accommodation. But, with a family and Nicola expecting Nicky jnr, they had nowhere else to turn. During this period, the housing units left a lot to be desired and the unit assigned to them was filled with damp and mould. As evidenced in the picture below. But, beggars can’t be choosers, as they say and the family moved in. And as things turned out this feature of the housing wasn’t the biggest of their problems. No, not by a long shot.

Approximately two months after moving in, while queuing up to pay rent, Nicola was assaulted by a Ukrainian national living in the complex, and according to both Nick and Nicola, this individual was kicked out of a number of other residences in the area for partaking and dealing in drugs. The initial fracas saw this Ukrainian man in an altercation with his girlfriend and Nicola relates what happened next.

“ I went up to pay the rent, and as I was waiting for the change, I was given a baby into my arms by a girl - and out of nowhere I was thrown up against a wall in the communal kitchen by this Ukrainian lad “

The baby was the child of her attacker and he then attempted to bite the nose of his own child according to Nicola. Nick, as a result of his training as a security professional, managed to subdue the man but his own partner was already hurt at this point.

“ I went to the staff and told them I was going to hospital and they told me that there was no need but it was up to myself if I wanted to go. When I got back from Portlaoise hospital I went to the Garda station but it was closed, so I went the following morning to make a statement. Then, after two weeks, I went back to the guards to see was anything done from my statement and I was told they could find no statement that I had made “

At Nicola’s twenty week scan of Nicky jnr in Portlaoise hospital, and shortly after this assault, a ruptured placenta showed up and with it much reduced blood-flow to Nicky jnr in the womb. It was also at this twenty week scan that potential trouble ahead raised its head in the form of medical reports advising Nick and Nicola that Nicky Jnr probably had Edwards disease or Patau syndrome - both genetic disorders with high fatality rates.

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Edwards' syndrome is rare, occurring in about 1 in 5,000 to 6,000 live births, but is more common in pregnancies due to high rates of miscarriage and stillbirth. Survival rates are very low: only about 13% of babies born alive with Edwards' syndrome live past their first birthday.

Pats or Patau's syndrome is also rare, affecting about 1 in every 4,000 births. More than 90% of children born with Patau's syndrome die within the first year of life, and survival beyond infancy is extremely rare.

Both feature major congenital deformities, restricted growth in the womb, low birth weight, and major complications post birth.

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Shortly after this, at approximately week twenty three, Nicola remained in hospital at the Coombe until Nicky Jnr was born four weeks later and thirteen weeks prematurely. The trigger for her move to hospital was in April 2023, when Nicola started to get really worried because she could no longer feel or detect any movement or kicking from Nicky Jnr.

His fight for life was well and truly underway. A fight, one might argue, that the medical establishment did little to aid him with because it was also at this point in his emerging life that termination options started to be consistently dropped into conversation and whispered in Nicola’s ear at the hospital. Options she and partner Nick refused to consider.

It is very critical to take a brief aside at this juncture to lay down a fact. Despite pre-birth medical advice to the contrary, Nicky Jnr, was born with neither Edwards disease or Patau’s syndrome. The eagle-eyed will already have observed to themselves another perceived fact. Abortion is only allowed in Ireland up to 12 weeks of pregnancy.

So, how was termination an option to Nicola at week twenty three?

Well, there is an aspect of Ireland’s abortion legislation not extensively advertised on the tin which allows for pregnancy terminations outside of the official twelve weeks on the statute book and the twelve week number most frequently advertised on our media. Edwards syndrome is one such exception.

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Irish Legal Framework

• Under the Health (Regulation of Termination of Pregnancy) Act 2018, abortion is allowed in Ireland after 12 weeks of pregnancy if two medical practitioners agree that there is a condition affecting the fetus likely to lead to the death of the fetus either before birth or within 28 days of birth.

• Trisomy 18 (Edwards syndrome) is recognized as a "fatal fetal anomaly" under Irish law and clinical practice, meaning it qualifies for termination under these provisions.

Irish Clinical Practice

• Following a diagnosis of Edwards syndrome, parents in Ireland are offered the option to continue the pregnancy or to terminate it, with both care pathways available.

• A recent study from Cork University Maternity Hospital found that, after the legalisation of termination for fatal fetal anomalies, 59.6% of parents with a Trisomy 18 diagnosis chose to terminate the pregnancy ( link here )

• There is no upper gestational age limit for termination in cases of fatal fetal anomaly like Edwards syndrome, but earlier diagnosis can facilitate more options and decision-making.

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Anyway, what we can say for certain is Nicola fought against any temptation to terminate her pregnancy even though advice suggested Nicky jnr possessed a condition allowing for late termination. On week twenty seven, Nicky Jnr was born weighing a little over 900 grams, a couple of spoonful’s short of a bag of sugar, and a new fight for life commenced in earnest.

“ His crying sounded like a little kitten when he was born “ said Nicola.

Doctors weren’t convinced of his chances of survival and reluctant to relinquish their pre-birth diagnosis of either Edwards or Pats syndrome. Each day brought with it a prognosis of imminent death from staff.

“ He’s probably going to die, today “

Though, Nicky Jnr may have cried like a kitten he seemed to be fighting for his life with a heart of a lion. Day one eventually passed, a key landmark. Then, day two came and went. Days three, four and five followed suit.

Little Nicky battle on. Somehow, someway.

On day six or seven, post-delivery testing brought a different set of results and an updated diagnosis. T21 or what is more commonly referred to as Down Syndrome.

“ We laughed ( with joy ) when we heard he had Down Syndrome, because it meant his chances of survival increased “

It wasn’t until July of 2023 that Nicky jnr was stable enough to transfer from the Coombe and thus began the next phase of the little man’s struggle for life. On arrival in Crumlin, Nicola and Nick met with their youngest son’s MDT ( multi-disciplinary team). A multi-disciplinary team is a combination of all the specialists and ancillary support combined together in person to each discuss a child’s complex needs. It was only at this stage that his parent’s learned that Nicky Jnr had suffered an earlier grade two bleed to the brain, to add to his chronic lung condition and congenital heart disease.

While in the Coombe, Nicky jnr contracted Covid-19, introduced to the ward by a member of staff, which led to a six week period in isolation and in Crumlin one other major incident occurred. This latter incident is subject to a legal case currently in train and so I can’t go into too much detail about it other than to say little Nicky developed aspiratory pneumonia. Aspiration pneumonia is a lung infection that occurs when a person ( in this case a baby infant ) inhales material such as liquid into the lower respiratory tract instead of injesting it properly. In Nicky Jnr’s case, this resulted in severe damaging to branches of his already under developed lungs.

Release from Crumlin hospital and attempts to encourage Nicky Jnr into Care.

When it became abundantly clear Nicky jnr wasn’t quite ready to give up on his life and leave this world without one hell of a fight, a different option began to be mooted. One gently encouraged onto his parents. Giving up their child and handing him over to care.

“ I’d be crying, and they’d be getting to me on my own, asking have I got post natal depression and kept reminding me that he was quite likely to die. I was wondering if they were doing it to break me and give up “ - Nicola Higgins.

As told by Nicola, frequent reminders were laid out to her as to Nicky jnr’s likely future and how difficult it would be for the family to cope.

- He might develop autism

- He might develop cerebral palsy

- He’ll never sit up

- He’ll never this, he’ll never that.

All of the incessant and building chatter bubbled to the boil one day during a meeting between Nick Flood and his son’s multi-disciplinary team, when it was revealed to Nick that the couple would not be able to take their child home but instead relayed that Nicky Jnr was going to be put into care.

Curiously, it was the family’s housing situation cited as the primary reason. According to Nick this was as a result of a visit and report on their newly sourced accommodation who reported finding damp and mould when installing facilities for Nicky Jnr in their rented home. It seemed the number of obstacles mounting up in front of the little boy and his family would never stop multiplying.

However, it was at this point something broke in the couple’s and little boy’s favour. A medical social worker on the multi-disciplinary team gave them the name of a solicitor and urged them to call him. She promised he’d work to find them alternative social housing quickly. Sure enough, within a short period and before his release from hospital the family had a secured new social housing in Athy, and indeed this is the same home I visited them at on Tuesday morning. So, when Nicky Jnr was finally released from hospital on the 8th of January 2024, he arrived into a new home with his family and not into care and with a fighting chance of survival.

Still, though, his future was very uncertain and the couple were advised as follows during his last days in Crumlin:

“ Take as many photos as possible because he’s likely going home to die “

In a sense, this was true. Nicky Jnr was being released from hospital but released into a palliative care scenario from the Irish medical establishment’s perspective and while the couple refused to sign a Do not Resuscitate order the implication was obvious. Suffice to say, investment in Nicky jnr’s future via operations to mend the hole in his heart or receive a double lung transplant in Ireland are close to zero. Hence, the creation of a GoFundMe account to try and source these procedures outside of the Irish State.

Click Here to view and donate to Nicky Jnr’s GoFundMe

So, while Nicky Jnr might still be alive, the quiet part out loud is that he is expected to die unfussily and with minimal future procedural intervention by the Irish health system and HSE.

It was at this point during our discussion that we turned away from talk about doctors, hospitals, and medical procedures to more personal, real and everyday concerns. Like how did the couple’s relationship suffer during this whole period and how were the rest of their children holding up in general.

“ Ah sure, we were gone almost all the time, and there were times when you’d be trying to buy their love with a toy from Smyths. None of it has been easy on them especially the younger ones “ Nick replied honestly.

Nicola followed on:

“ Oh there’d be times when we’d be telling each other to fuck off out of the hospital room but I knew if we didn’t stick together as a team, Nicky would die “

The rapport between the two of them during our conversation was very relaxed and complementary. Nick is a natural talker with a reassuringly calm demeanour and quietly persistent while Nicola often interjected to zone in on a particular episode and clarify specific points with detail. For the whole time I was present, Nicky Jnr was a very real and loved part of their big family and passed between the arms of mother and the older kids, who are close to being young adults now. This background scene brought to mind another question.

“ If I had a magic wand and could grant you one wish to heal one of Nicky Jnr’s many problems, what problem would you choose to tackle first ? “ I enquired.

“ I’d love for the hole in his heart to be closed “ Nicola responded, instantaneously.

Nicky Jnr’s Christening in hospital

In September 2023, Nicky Jnr was christened by a chaplin in the hospital and not even this was a totally straight-forward process. No doubt, Faith in God played a major role in Nicola and Nick’s decision making at every step along the way through-out the last two and half years. To my casual eye, they don’t appear to have got many of these decisions wrong on behalf of their son.

In the days after the christening the area around Nicky' Jnr’s bed became decorated with holy cards, rosary beads and pictures of the Blessed Virgin Mary along with other memorabilia to mark the occasion. Soon, though, they were removed by hospital staff and piled together on a locker.

“ I had his room decked out like a shrine but they wanted them all taken out of his room “ Nicola said.

Nicky Jnr was too weak to be brought even as far as the hospital chapel for his christening but both Nick and Nicola found great solace in the hospital church throughout their stay and as Nick said:

“ The church was the only place I could clear my head and think for a few minutes “

Conclusion

The last eighteen months, post release from Crumlin children’s hospital, have brought frequent return visits and stays at both Portlaoise and Crumlin’s children’s hospital. Nick estimates the number of emergency visits at between ten and twelve.

Nicky Jnr lives on, though.

Breathing in and breathing out with silent persistence.

The GoFundMe account has a target of 150,000 euro and currently sits at a little over 40,000. Nick and Nicola hope to one day bring Nicky jnr to a hospital in Boston to have the hole in his heart fixed and possibly also undertake that double lung transplant. But, after the initial flurry of media interest and support the dial upwards has ground down slowly over time.

The digital world brings news of other concerns and other places to invest our time, care and attention.

Unfortunately, these are the times and country we live in.