Told by proud parents Patrycja and Jonathan.
Our story began in the spring of 2020 where we found out we were expecting our first child. We were so excited to be parents, full of joy, but little did we know what a rollercoaster awaited us. At our routine 20 week scan the sonographer broke the news to us that there may be a problem with Oliver’s heart and referred us to foetal cardiology. Later that week we were told that Oliver had a condition call transposition of the great arteries with a VSD. At this stage we were told that Oliver would require open heart surgery at birth and that there were major risks.
Over the next few month we were juggling appointments in between three hospitals; Altnagelvin, Belfast and Dublin to ensure a safe delivery could take place, to give Oliver the best chance possible.
During this time, we were introduced to Cathy, the Family Support Manager from Children’s Heartbeat Trust. She would check in regularly to see how we were doing and also ensured we had financial support for travelling.
“We really felt we weren’t alone and had a great friend to talk to.”
At 39 weeks we were checked in at the Coombe Hospital, 200miles away from home and ready to meet little Oliver for the first time. Oliver was born on the 2nd March 2021. He was beautiful and we were so, so happy but also terrified of what awaited us. Oliver was swiftly taken away and transported to the Crumlin Children’s Hospital where he could be stabilised and assessed for his surgery. We then spent 10 days in Dublin thinking the operation was due to take place, however the doctors decided that to give Oliver the best chance he had to be transported back to Clark Clinic in Belfast to gain more weight. At this time we were so worried as Oliver’s heart function was not good. We then spent 3 weeks in Belfast where Oliver was tube fed and kept stable with oxygen.
It was Easter time and we celebrated Oliver’s 1st month of life in hospital. Due to Covid 19 there were lots of visiting restrictions but Children’s Heartbeat Trust still managed to keep in touch, leave us a little Easter bunny and a lovely card, this really meant a lot to us. We also got a little photo together outside the ward, which was lovely.
During this time emotions were high and we were still far away from our home, thankfully Children’s Heartbeat Trust provide accommodation in the hospital so were able to stay and remain close to Oliver. Cathy from the charity also remained in regular contact.
“At times we were very low and Cathy would always be there to listen and to offer words of support, sometimes it wasn’t even what she said but the fact she was there just meant everything.”
Finally on the 9th of April Oliver had his arterial switch and closure of his VSD operation in Dublin. This was the longest day of our lives, waiting patiently for the surgeon to return with news. That evening he explained things looked good but we had to be patient and the next few days were critical. The next day we were feeling fairly positive until we got a dreaded call from the ICU, little Oliver had a cardiac arrest, and required CPR. Oliver was now on life support (ECMO).
We spent the next 7 weeks in ICU with Oliver, there were so many emotions, days of hope but also low days of thinking the worst.
“Throughout this journey Cathy from Children’s Heartbeat Trust kept in touch and was always there when we needed to talk.”
The charity also provided us with financial support throughout our time in hospital. This was a great help and gave us comfort that we didn’t have to worry about these expenses.
Finally Oliver made it off the ventilator, after previous failed attempts. It was the happiest day and we finally got back to the children’s ward! A few weeks later we were back in Clark Clinic in Belfast and Oliver was taking his final steps toward his recovery. After another few rocky weeks we finally got the Doctors nod and the day we dreamt of had finally come, the 4th of June 2021, the day we went home as a family of three!
Having Oliver home with us was just truly amazing, he finally got to meet his extended family after three long months. It wasn’t all plain sailing though as Oliver still had to be fed by tube and was still on several medications which we had to administer. Even after we were home Cathy still kept in touch, she was just brilliant. I remember just before we left Belfast we finally met Cathy in person for a coffee and it was just so nice to put a face to the voice we had heard for so long.
Oliver is now 8 months old and no longer feeds by tube, he is thriving. He can take a bottle like a champion and only has a small amount of medication. He is just a real personality, laughing and giggling and kicking his little legs all day long. Sometimes when we look back it feels like it was just a bad dream, but we know it wasn’t, it was a challenge of a life time.
“We want to thank everyone at Children’s Heartbeat Trust for their help and support. They have a special place in our hearts!”
Even now, the charity still provide us support, inviting us to different events that we can get involved in. We can’t wait to join other heart families at the winter wonderland event! It’s Oliver’s first Christmas so it’s going to be very special. Thank you Children’s Heartbeat Trust!
If you can, please support Children’s Heartbeat Trust this Christmas. They are a real life-line for families like ours.
Heart Parents Patrycja and Jonathan.
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