Before telling you about Luca Joe, I want to bring you back a little further to January 26th, 2022, when John Leonard walked down the stairs with his mother and handed me a pregnancy test that showed as positive.
Two years earlier, we received the gift of our first born and that was amazing, but to then receive the news that we were expecting a new addition to our family was truly a surprise. The thought of us being able to bring another healthy and happy life into the world and provide a sibling for John Leonard was all we had dreamed of.
On St Patrick’s Day, 2022, with Liz now 12 weeks pregnant, we received the results of a diagnostic test that showed our baby had Trisomy 18. Neither Liz nor I had ever heard of Trisomy 18, so we frantically searched the internet which of course pulled up all the worst-case scenarios and images. After processing this difficult news and having some time to reflect together, we made a commitment to give our unborn child every opportunity to grow and develop as best he could and to allow ourselves to be taken on a journey where the destination, length and conditions of that journey were unknown.
Also known as Edwards Syndrome, Trisomy 18 is a disorder in which babies are born with three copies of chromosome 18 instead of two.
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Due to its complexity, we knew the possibility was high our baby would not go full term, but we wanted to see where he would take us. And so the journey began... a journey of hope, fear, frustration, disappointment, laughter, tears and grief but, above all else, love.
On September 15th, 2022 Luca Joe arrived into the world.
His birth filled us with tremendous relief and joy, while fear and uncertainty hung in the balance as we wondered how much time he would have with us. Ann & Robert H Lurie Children’s Hospital of Chicago is where Luca lived his life and where our family set up our home from home. It is where our hearts were housed and where we gathered, laughed, cried, loved and lived as a family of four for five months. It is where we got to know Luca Joe and watch him reveal his true character and personality.
Throughout Luca’s life at Lurie’s, we experienced and became part of the phenomenal care, love and support from the exceptional medical professionals who work there.
Luca had extensive complications, a lot of which were known to us prior to his arrival and he was immediately intubated once Liz gave birth to him. Liz got to hold him for a precious couple of minutes before he was whisked off to the NICU ward. Two days later, Luca was transferred from the women’s hospital to Lurie Children’s for his first of several surgeries. The weeks seemed to roll into one another with good days, following not so good days, but Luca seemed to be steadily making small incremental improvements – every little ounce of weight gain was celebrated as if it was a pound gained.
During this time, we were blessed to be able to get permission for family visits, and Luca Joe got to meet some grandparents and uncles and aunts from Michigan and Ireland.
I’m originally from Abbeyside, which is on the Waterford side of the bridge in Dungarvan, Co Waterford. There’s a total of eight in the family, with me being the only one not living in Ireland.
I met Liz in November 2000 in Boston when I was living there and she was visiting for the weekend. She was on a “reconnaissance” mission with her friend to sus out the city and get a feel for whether she would like to make the move from Grand Rapids in Michigan and assume a teaching position. A good friend of mine, Seanie McCarthy, was over visiting at the time also and of course Liz and I ended up meeting each other in a nightclub that weekend.
Our relationship soon started, but then I moved back to Ireland and despite several attempts at a long-distance relationship we ended up going our separate ways with me back in Ireland and Liz moving from Boston to Chicago. We stayed in touch sporadically over the years, until eventually we got our act together at the end of 2017 and with me now being an employee of Northern Trust (an American bank which has offices in Dublin and Limerick), I was able to apply for a transfer over to the Chicago office. I made the move to Chicago at the end of March 2018, and we got married on August 17th.
Eventually, after much patience and faith, we welcomed our son John Leonard into the world on February 19th, 2020.
By the end of 2022, our family of four was looking forward to all being together on Christmas Day in the hospital. The new year, however, brought new challenges for us all, with a failed extubation attempt on December 26th meaning we now had to embrace the reality of Luca Joe having a tracheotomy (an opening surgically created through the neck to allow air to pass to the lungs). Planning meetings took place between ourselves and the medical professionals to inform and provide insight to us about what to expect when Luca Joe would move home, what changes would need to be made to our house, what kind of support we would get from an in-home nurse, what training we would need to undertake in terms of the care and upkeep of his ventilator.
As intimidating and overwhelming as all this was, the good news was Luca Joe would be coming home and we would all be together.
But, at 6am on Monday, February 12th, 2023, everything changed.
I took a call telling us we needed to get to the hospital immediately as CPR was being performed on Luca Joe. Liz’s sister Julie arrived to look after John Leonard and we raced downtown to the hospital.
I will never forget the scene when we arrived at our son’s room; there was a chaplain waiting to meet us. Nurses and doctors were everywhere, some were familiar, some were brand new to us. We were given a brief rundown of the morning’s events, but it was made quite clear that the next 24 hours of Luca Joe’s life were critical. Phone calls and text messages were sent to family in Michigan and Ireland, pleading for prayers. As the day and night went on, Luca Joe amazingly showed signs of improvement; once again, he had defied all the odds. When the director of the NICU came to meet us on the morning of Tuesday, February 14th, he smiled, laughed and shook his head in disbelief at the strength and resilience of our son.
That night, however, we were told the CO2 readings from Luca Joe were at 82 and had been steadily creeping up. My heart sank as I knew the medical professionals had already exhausted all avenues in terms of different types of ventilators to help our son breathe – C02 levels in the ascendancy was the opposite of what Luca Joe needed.
I got to the hospital just before midnight and settled in for what we hoped would be another mammoth display of courage and resilience from our son. The hours passed but the gas readings coming back were not good.
About 3.15am, after consulting with the doctors, Liz and I made the decision to allow our son to pass naturally in our arms.
All equipment and tubes were removed from Luca Joe and we got to spend some private time with him. He was intubated for the five months of his life and so to be able to hold him and kiss his beautiful lips unimpeded was a memory I will cherish for the rest of my life. A few hours later, we brought John Leonard in to meet his baby brother for one last time. It was time for Luca Joe to now be with God in heaven. John Leonard still talks about his baby brother and speaks about him regularly – often wondering when we can get on the aeroplane to heaven and visit Luca Joe. The funeral Mass took place on February 22nd in St Andrew Catholic Church in Chicago. He was surrounded by family and friends and a huge representation of nurses and doctors from Lurie Children’s Hospital which in itself is testament to the impact he had on them.
Below are some of my words from the eulogy I gave at Luca Joe’s funeral, there is no other way for me to describe our love for him:
“We loved his beautiful lips that we eventually got to see the week before he passed after his tracheotomy took place. We loved his little hands, his boneless thumb, his clubbed feet with his two big toes that were actually smaller than all the rest of his toes – all of these perfect imperfections made him unique and even more special to us.
We loved everything about Luca Joe, his strength, his resilience, his courage and his refusal to give in. Through all the surgeries he faced, he kept on fighting back and his medical team were amazed at how he battled back from having CPR performed on him two days before he eventually passed. Despite his diagnosis, and the pessimistic statistics associated with Trisomy 18 babies we always felt that he would fit into the 5-10 per cent category who live beyond one year. That was not to be but we take great comfort in the fact that we as parents did everything we could for him, his medical team exhausted both themselves and their machines for him, and he fought to the very end until he accepted his call from God.
To Luca Joe – thank you for choosing us to be your parents. You brought us on a journey that we will never forget. You have changed our lives forever, and you have had a profound impact on your respective families both here and in Ireland, many of whom never got to meet you in person but hold you dear in their hearts. We have forged new friendships, we have gained more knowledge, we have learned to accept things that we cannot control, you have brought our family closer and made our hearts stronger. We are immensely proud of your courage and resilience, and there will not be a minute goes by that we do not think of you. We will all be together again one day.
Codladh samh mo bhuachaill bán, is gra linn thú gach nóiméad de gach la.
Cycling around Lake Michigan
In an effort to raise awareness about Trisomy 18 and to raise funds for Lurie Children’s Hospital and Soft (the support organisation for Trisomy 13, 18 and other related disorders), I will be taking on the challenge of cycling around Lake Michigan starting on Saturday morning, September 9th.
The total route is 954 miles (1,535km), equating to a daily distance of just over 136 miles (220km) over seven days. The ambition all along was that I would finish on Luca’s first birthday (September 15th) and that he would be with us – unfortunately, it will not be a physical presence but there’s no doubt that our Bringer of Light will be with us in spirit. To follow our journey, go to @lapthelakeforluca on Instagram or see lapthelakeforluca.com