Findlay Harasymiuk-Mackenzie, a little boy from Kilcreggan, has been chosen as one of the faces of this year’s Yorkhill Children’s Charity Christmas appeal.
The campaign aims to raise £150,000 to fund a new cardiac scanner, the first of its kind in the UK
Every year, thousands of babies, children and young people living with heart conditions are treated and cared for at the Royal Hospital for Children, which is the national provider of paediatric cardiology services in Scotland.
This state-of-the-art piece of equipment will help medical staff diagnose and treat heart conditions in thousands of children each year.
To support Yorkhill Children’s Charity’s Christmas Appeal, donate £5 by texting YORKHILL to 70555. Donate online at www.yorkhill.org/yorkhills-little-hearts-appeal or call 0141 212 8750.
Here Findlay’s mum Millie tells her story:
A journey begins…
We were having a baby! My husband and I looked up at the monitor at 20 weeks.
I asked the nurse if everything was ok. She hesitated….”Yes I think everything is fine,” she said hesitantly.
“There’s something I cannot quite make out but I think it’s all fine. You can come back for a follow up scan if you like but it should all be ok.”
The fact that she hesitated had me worried so I agreed to a follow up scan. The follow up scan showed an abnormality.
Exactly what was wrong could not be clarified. Di George Syndrome was a possibility that was voiced. Medical problems commonly associated with Di George syndrome include heart defects, poor immune system function, a cleft palate, complications related to low levels of calcium in the blood, and delayed development with behavioral and emotional problems. My head was in a turmoil and the tears began to flow.
Findlay Harasymiuk-Mackenzie was born on 3 November 2010. Findlay was born at full term weighing 7lb 14 oz. Shortly after his birth myself and his father had a medical team visit listing an entire ream of problems: heart issues, breathing complications, bowel imperfection and Downs Syndrome. It was overwhelming. On the positive side of things he did not have Di George Syndrome!
We were heartbroken to think what faced our lovely new-born baby but wanted to ensure that we were there every step of the way to give him the fighting chance to survive.
To add even more heartache to the situation, shortly after being born at Glasgow Southern General, Findlay was taken away to another hospital in Glasgow – Yorkhill
This was a hospital dedicated to children. It was a nightmare being kept in hospital with other mothers who had given birth to babies and were with them, whilst my child was in another hospital.
It was two days later that I was finally allowed to leave the Southern General and when I arrived at Yorkhill Findlay was in theatre undergoing his first operation on his bowels. That’s when the rollercoaster of events, which was to become the norm in our lives, began.
In technical terms Findlay was diagnosed with Pulmonary Atresia + VSD (including fallot type), Trisomy 21 (Downs Syndrome) and an imperforate anus.
His first operation was the siting of a stoma. A stoma is an opening on the front of your abdomen (tummy) which is made using surgery. It diverts your faeces or urine into a pouch (bag) on the outside of your body.
This was necessary for Findlay as the rectum had not fully formed and the opening of the anus was missing. Until surgery could be performed to rectify this issue he would have to live with a stoma as priority had to be given to his heart issues.
I remember talking to the consultant who was explaining what was happening and pouring out my feelings of guilt. I had gone against the advice to have an amnio whilst pregnant and as a result I had given birth to a child that would have a life of surgery and complications.
The pain and challenges that would lie ahead for my little boy were unbearable to think about. The surgeon asked me what would I have done if my amnio had shown that I was to have a child with complications. I told him it would not have changed my mind to go ahead with the birth and give my child a fighting chance. He told me if that was the case I had made the right decision as why put myself at risk of a miscarriage for nothing. He had a point!
So what were his heart issues? Pulmonary Atresia + VSD. Pulmonary atresia is a life-threatening situation. What happens is that the valve that lets blood out of the heart to go to your baby’s lungs (pulmonary valve) doesn’t form correctly. Instead of opening and closing to allow blood to travel from your heart to your lungs, a solid sheet of tissue forms. Blood from the right side of your baby’s heart can’t go back to the lungs to pick up oxygen.
Therefore time was not on our side. A week later he underwent his first cardiac procedure. He had a right BT shunt (a temporary procedure which ensures that babies with heart defects get enough oxygen until they can have surgery to fix the defect). This was carried out through an incision through the ribcage on the right of Findlay’s back.
The shunt (a small tube of synthetic material) was attached to one of the sections of the blood vessel to the arm and to the pulmonary artery making a direct connection between the aorta and the lungs (mimicking the ductus arteriosus).
This allowed more blood to flow to the lungs and improves the oxygen saturation levels (SAT’s) relieving severe blueness (cyanosis) that Findlay was experiencing. This was followed 10 days later by a pulmonary artery stent. A stent is a small metal tube which was inserted to help widen the narrowed passage of his left pulmonary artery.
It was a challenging start to our new life as first-time parents. However, what I found surprising that despite all of this turmoil, we somehow found the strength to take it in our stride.
The easiest part to come to terms with was the diagnosis of Downs Syndrome, which I felt was just a medical abnormality which we would have to live with. However I later learnt that a lot of the issues Findlay encountered with his health are linked to Downs Syndrome.
The most difficult path I saw ahead was the clinical problems, mainly his heart issues. These were life-threatening and would prove to be so on a continuous basis.
During our first weeks at Yorkhill we became well known by the staff and were well looked after. The staff were informative and supportive and we also became aware of the Family Support unit who were to become a big part of our support network over the following weeks, months and years.
It was a challenging few weeks but we finally made it home on December 23 and despite having to come home with a baby on a feeding tube and a heart (apnoea) monitor, it was a fantastic, if somewhat daunting feeling. Apnoea is any pause in breathing (respirations) and may cause oxygen desaturation (too little oxygen available to the tissues). Findlay’s saturation levels were low, falling below 50% on occasions (normal saturations are 98-100%), which was scary but something we lived with.
Six months later we were back at Yorkhill as Findlay was readmitted for balloon dilation of his shunt, which had become blocked.
Ten days later we were home but back in a few days later due to Findlay having a fever and constant vomiting. We finally made it home three days later and began to try and lead a semi-normal life. It was full of medical appointments: physiotherapist, speech and language therapist, doctors, nurses, consultants and so it went on.
At eight months Findlay started nursery at Mulberry Bush in Helensburgh and despite his health issues (on a heart monitor and with a stoma) he was welcomed with open arms. The staff were phenomenal and he stole their hearts.
The ‘normal’ life was short-lived as just after his first birthday Findlay was admitted for major open heart surgery. The aim was to close his VSD –Ventricular Septal Defect (hole between the two pumping chambers of the heart) and to widen his pulmonary arteries. The right valve to his left pulmonary artery underwent a conduit construction. This procedure was undertaken together with a shunt construction whereby a cow’s vein was inserted
Unfortunately after the operation his condition did not improve and on the morning of December 23 he was back in theatre to repatch the VSD which had started to unravel.
It was a very long day as my husband and I waited for the outcome of our son having to undergo another major operation so soon. The risk of the first operation was a matter of life and death, so for him to have to undergo open heart surgery again so soon was unthinkable.
The waiting was unbearable and as it was so near Xmas there was festive cheer surrounding us but that was the last thing we felt. In the hospital canteen there was a Xmas panto being shown and all I could think of was that we may never see our wee boy again!
Fortunately the surgery was a success and we finally saw our son again at 8.30 that evening – what a relief! However, we were told that whilst they had fixed the heart, they then found out that the lungs were not working when they took Findlay off by-pass. His tubes were blocked and they had to suction out a lot of secretion in his airways and drain away excess fluid around his lungs.
Xmas day was a quiet affair as Findlay was kept sedated/paralysed and Boxing Day was no better.
An x-ray showed one of his lungs had collapsed slightly. Over the coming weeks that became our next challenge. He contracted pneumonia, EBSL (a strain of MRSA), post- operative Chylothorax (a rare but severe complication of surgery) and his oxygen levels (SATs) began to fall once more. Yet through it all, even when he was on a ventilator, he had a smile for everyone and was soon a popular patient amongst the staff.
The days dragged into weeks and we were soon only too familiar with the hospital saying ‘one step forward and two steps back’! The outcome was bleak but Findlay was a ‘fighter’
On 23 January 2012 we finally made it home.
Again we began to pick up the pieces of our lives and try and regain ‘normality’. Findlay returned to nursery, myself and his dad returned to work. There were on going hospital and medical visits but there were no further operations until the following year.
In January 2013 his colostomy was closed – again complications but relatively straightforward.
There was then a period of calm as Findlay flourished at nursery.
However his turbulent life was to see another period of upheaval. In May 2013 he lost his grandmother, then in the June his grandfather.
Closer to home in October 2014 he was subjected to seeing his canine companion have a ‘fit’ and then pass away. The pain did not end there, as he was then to witness a rapid deterioration in the health of his father in the coming months.
His dad was diagnosed with motor neurone disease at the end of October 2014. Life changed dramatically, the rough and tumble games came to an end, the daily jenga games and tower building with blocks could no longer be carried out with his father, Findlay was often asked to step aside as I had to help his father before seeing to his needs and then all too soon in June 2015 his father passed away….
So not only was Findlay having to deal with the challenges in his own health but also the loss of those nearest and dearest. A difficult time for us as our family unit had been broken but his resilience kept us going and in my moments of grief he was my tower of strength.
It was a surreal situation as when he saw me upset he would take my hand and ask me if I was ok? A four year-old acting more like a 14 year-old! Despite the heartache life continued and in August 2015 I proudly took him for his first day at school.
However we always knew that he would have to undergo more major surgery before his fifth birthday and that day came in October 2015.
The operation scheduled was to close the VSD (hole between the two pumping chambers of the heart), replace the conduit and widen the pulmonary arteries (arteries to the lungs). The enormity of the undertaking was clearly explained to me. A risk of complications including mortality, permanent disability, re-intervention or other issues which would prolong his hospital stay were discussed. However there was no alternative if I wanted to keep my son alive and time was not on our side.
It was an emotional period and the support we had from the hospital was second to none from all angles. They were well aware of the tragedies we had faced as a family and how sensitive a time we were having. Whilst we were going into a new hospital to have the surgery, (York Hill had recently moved to the Southern General) it was reassuring that the staff were the same
Back home the local community were routing for us too and they even took time out of a fundraising run to show their support by displaying his name on sheets of paper and sending it to me to let me know he was not there but they would be running for him. It made me cry to know that support was there!
To everyone’s delight the operation went well and a week later we were home! There have been ongoing issues with his wound healing but a plan was put in place with the hospital to manage this this.
On a recent visit to the hospital for another appointment with the surgeon one of the ladies in the Aroma coffee bar told me excitedly that there was a great picture of Findlay on display. With surprise and delight I saw Findlay had been chosen as one of the faces of the Yorkhill Charity Appeal. What an honour!
After all the amazing care of the staff not only in dealing with Findlay but to us all as a family, it is the least we can do to offer our support to such a worthwhile cause. We have already seen how medical progress has positively helped our child and further equipment will be invaluable in only helping his life going forward but that of other parents in vulnerable situations.
I am lucky to have a son who despite having gone through so much trauma over his short life, has benefitted from the brilliance of the staff at Yorkhill and latterly the Royal Hospital for Children in Glasgow, and today is once more back at school as life continues
His entrance into this world was not an easy one and from day one, it was a challenge, both for himself and for those around him. He was quickly labelled a ‘little fighter’ and despite all he’s been through he has a bubbly personality and a smile for everyone.
It’s amazing how infectious a smile can be and we hope he continues to keep his happy disposition no matter what hand he is dealt as he goes through his life.
The pictures below have been supplied by Findlay’s family:
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