Family Stories

McNeely Family

 

McNeely Family

This is the story of 10 year old Joshua McNeely from Ballymena. His journey is not typical for a ‘normal’ 10 year old, not to mention a ‘heart baby’ of Clark Clinic.

We (his mummy Julie, and daddy Martin) were so excited by the prospect of our first child. Although we lived in East Belfast at the time, we opted to use the Royal Maternity, where other family members had been born and friends worked.

When he arrived early hours of September 17th, 2003, it was, as parents know, the most amazing experience. I (Martin) had wanted a boy to play sport with. When I said “Hello son” and he opened his eyes, just a few minutes old, it was an incredible feeling.

As Julie rested and the euphoria calmed over the next few days, a doctor heard a murmur as she checked the heartbeat. She thought it was harmless, but asked that we call in Clark Clinic for a scan, on our way home on the Monday. Dr Sands from Clark Clinic scanned Joshua and informed us that he had severe aortic stenosis and would probably die within a relatively short space of time. He had to have open heart surgery within a matter of days in the Royal.

We were devastated. But, with the support of those around us, we quickly focused on the immediate future. As a trainee Presbyterian minister it was an unusual time for me. I had counseled others about how God calms the storms (Mark Ch4). Now it was our turn to experience turbulence. I remember sitting in the RVH chapel that Sunday, reading the passage, with a heavy heart. The chaplain, Rev Henry Wilson came in to conduct the Sunday service to a congregation of one – me. He opened up the very same passage and preached to me alone. I knew we would get through, whatever the future held.

The baby Joshua must have had 5 or 6 ministers visit him in Clark Clinic. A family friend who had played rugby for Ballymena and Ireland also called in – leaving an impression on one nurse from County Antrim!

Joshua had his aortic valve widened by the surgical skill of Mr Gladstone. But we were told he may have to have further surgery. We were told meantime to take him home and treat him ‘normally’ allowing him to play and move with freedom. This was the best advice we were given.

He returned for a valvotomy at 3 months old, which was successful in widening the diseased valve, returning home to live an active life as a growing, jolly baby boy. But we knew there was a possibility of a trip to Birmingham Children’s Hospital for more radical open heart surgery. And so, just before his 1st birthday, we got the call to drop everything and fly to Birmingham.

It was there that Joshua had a Ross Procedure. His aortic valve was discarded and replaced by his own pulmonary valve. This should hopefully grow as it contains his natural DNA. Into the pulmonary position was planted a donor valve, which will need replaced. It was an agonizing day long wait, complicated by difficulties getting Joshua off the life support. His chest was open for a few hours in intensive care recovery as we nervously waited for him to pull through.

The amazing staff in Birmingham put up birthday bunting around his bed as he was moved back to the ward. We were really boosted by the visit of a Clark Clinic nurse who was over from Belfast visiting Birmingham. Such kindness. Our minister called for an overnight stop to pray with Joshua. We also were helped by a Belfast man who was a senior consultant there.

Within a week our one year old boy was grabbing the side of the cot and jumping up and down with fluid tubes hanging out of him. When he flew home his Granda explained to the City airport Police that he had to park the car kerb side at the door for his seriously ill grandson. They gave him a strange look when the toddler came RUNNING out from arrivals.

And so Joshua has grown. He has had the greatest of support from Dr Sands and the team in Clark clinic, who always reassure us. Knowing our love of rugby, Dr Sands advised that Joshua “could tackle and be tackled.” We took him at his word, enrolling him just before his 4th birthday on the books of Malone Rugby Club minis on the Cregagh Rd – the club his Daddy played for.

A call from the Presbyterian Church has subsequently taken us to Ballymena and onto Ballymena Mini Rugby club, where Joshua has played an active role for nearly 6 years. He would be recognized as one of the more ‘physical’ members of the team, very willing to ruck and tackle, with no lack of aggression. In his primary school, he was one of 3 P5s to be selected for the school football team, in which he now regularly plays as a P6 this year. During the summer months he has played hurling for All Saints Gaa.

Following his father, Joshua also loves surfing in Portrush and has been allowed to train with the Troggs Surf School youth elite team, which seeks to nurture future talent on the North coast.

Joshua is full of energy. He would think nothing of playing rugby and spending 2 hours on a trampoline in the back garden. He once cycled 10 miles with his jogging dad – he was fit for more, while father crashed on the floor!

It is a privilege being a parent to him. He is a loving brother to his little sister Martha, willing worker at school and a mature thinker in our Church and Boys Brigade. At some stage in the future he will need the substitute pulmonary valve replaced. Maybe twice, as he grows. It will likely be by more open heart surgery, though as he (and surgical skill) develops, perhaps it will be by another method. Perhaps it will be in Ireland, not Birmingham. We simply do not know. But nor should we worry. Firstly, we have learned about the sovereignty of God and secondly, we have Dr Sands and Clark Clinic, every step of the way.

Joshua is an unusually active boy who loves and lives life to the full. We know there are many babies who come out of Clark Clinic with different stories and outcomes. His own journey is far from over in terms of future procedures. He cannot compare with others, in that sense.

When we were emotionally wrecked parents holding a baby facing life or death surgery in September 2003, we stared at the hundreds of pictures of all the children who had been helped in Clarke Clinic. Looking at those pictures, and receiving the comfort of the nurses, gave us massive inspiration. Maybe you are reading this and your baby or child faces heart surgery. Joshua McNeely’s picture is up there on that wall somewhere. He’s charging hard with a rugby ball.