For Patrick’s family, Oct 2 2020 was the worst best day of their lives.  

Story submitted by his mum Sheridan.

Patrick was born via semi-planned cesarean after doctors deemed an induction was too unsafe. We were heavily monitored throughout pregnancy due to Patrick having MCDK in his left kidney and I had carried an extreme amount of amniotic fluid. We knew we were in for something different to routine, but we certainly didn’t know exactly how our lives were to change.

Due to COVID restrictions, Patrick was transferred 100km away to The Royal Children’s Hospital. His dad Leigh followed up and was able to meet him in the NICU, where he was stable and heavily monitored.

A team of people was there to tell Leigh that Patrick’s oesophagus didn’t connect to his stomach, he had an unusual connection between his trachea and oesophagus and his bowels hadn’t formed correctly – as well as him only having one functioning kidney.

Leigh signed consent for RCH to operate on day one of life. Patrick was in the theatre for more than 6 hours where they placed a stoma and repaired his oesophagus.

48 hours after Patrick was born, I was discharged to travel to The Royal Children to see him. I hadn’t ever spent much time in a hospital, let alone see an ICU. There was my new baby, surrounded by equipment, dozens of lines and tubes coming from every inch of his body. It was the peak of our first pandemic lockdown which added another heavy dimension to our time in hospital.

It was days before I could him. It was a week before he could have expressed breastmilk, via syringe. Eventually, he was upgraded to a bottle – given to him by a nurse “just in case”.

Patrick had his pull-through procedure at 3 months of age. This time, I signed consent and saw him off with his surgical team. I was in awe at how caring the team was. They sang, cuddled, and reassured Patrick as if he were their own. I cried for most of the time he was in the theatre. I was so concerned he would go backward and not forward. The first few days on the ward were tough. Patrick had trouble with pain relief and did react to some medications. Slowly, each tube, line, and monitor was removed and we were able to return home for a couple of weeks.

A few weeks later we were at RCH again, for his wound to be checked, and for us to learn how to care for his bottom until he is ready for stoma closure. Thankfully, the next few months went by relatively uneventful and we were able to have his stoma closure surgery at 7 months.

Having Patrick’s stoma reversed was “an end of an era”. Our family has become so used to no pooey nappies. Although we were so excited to see his entire tummy as it should be… for the first time!

His first year of life was definitely unimaginable – between COVID, surgical stays and even having our team on speed dial for frequent check-ins.

Since then he has been diagnosed with scoliosis. Despite the additional co-morbidities – Patrick is cheeky and energetic.

Our journey as parents was one you couldn’t ever have imagined, we have learned how strong and resilient we are and we have learned that our Patrick is even stronger and even more resilient than us.

We are frequent flyers at RCH, speaking to many teams who care for Patrick (and us) so greatly. We are so blessed to have access to RCH and the incredible, dedicated individuals who work within the walls of such a special place.