Michael’s first Christmas was spent in intensive care instead of at home with his family
Michael’s journey started on the morning of November 29, 2017. Not having presented with any prior indication of heart problems, Michael was born 6 weeks premature. Mum Jessica experienced severe medical complications throughout the pregnancy which culminated in an induced labour and an emergency C-Section at the Sydney Adventist Hospital (SAN).
Michael experienced labored breathing and was originally diagnosed with Respiratory Distress Syndrome (RDS), a common condition with C-Section delivered babies. A slight murmur was also detected. Both Jessica and Dad Anthony were advised that the appropriate course of action was to transfer Michael over to Royal North Shore Hospital (RNSH) where he could receive the appropriate treatment for the RDS. The NETS team were called in and Michael was transferred safely over to RNSH. Jessica was still a patient at the SAN but managed to also get transferred to RNSH so she could be with her son.
Michael began to show signs of improvement whilst in the NICU so was transferred over to Special Care Unit with the view of going home. Whilst in Special Care though, the team once again detected the murmur. A precautionary echo was ordered which uncovered a significant Ventricular Septal Defect (VSD) as the cause of Michael’s respiratory problems. The team were amazing in explaining the condition to Jessica.
"What should have been such a great experience was getting worse by the day"
Jessica recalls those moments as though they were yesterday. “I learnt of this news on my own. My initial thoughts were ‘How am I going to explain this to Anthony?’ It was hard enough taking it all in but having to relay it back to Anthony was what I feared the most. Once Anthony arrived at Michael’s bedside, I broke down. We had been through so much in such a short period of time. What should have been such a great experience was getting worse by the day. He saw my face and immediately knew something was wrong. We spent the next week not knowing what the course of action would be. Would we do the surgery immediately or would we have to wait? We did what most people these days do when they don’t know something and that was turn to Dr. Google. For the next week, all we did was read up on the condition, treatment, and success rates. That was probably the worst thing we could have done.”
Anthony and Jessica were lucky in that they had the support of their family, their friends, and their faith. Not only did they have to juggle bedside vigils with Michael, they also had two-year-old son Elijah wondering where mummy and daddy were. “Trying to explain what was going on to Elijah was also quite challenging” said Jessica. “Reasoning with a two-year-old is hard enough, let alone trying to explain the complexities of a VSD as being the reason why mummy and daddy were spending so much time in the hospital whilst he transitioned between both grandparent’s houses, as well as his aunty and uncles place. It was amazing how our entire family really rallied around us”.
Jessica and Anthony were advised that Michael would eventually need surgery. How soon would depend on how his condition would develop. They were in a holding pattern of wait and see. Some days were good, others not so good. It was an absolute roller coaster for them.
Over the next week however, Michael condition worsened and he became a more urgent case. He was transferred to the already full Children’s Hospital at Westmead and within 24 hours he had had his open-heart surgery to do the repair the VSD. He was 21 days old.
"The hardest part for Anthony and I though, was handing him over to the surgeon"
“The night before his surgery was really hard. The team at The Grace were amazing in comforting us, making sure we were prepared for what was to come, and just being there for us” says Jessica. “We couldn’t help but think whether this would be our last night with Michael. Was this going to be the last time we fed him? The last time we bathed him? The hardest part for Anthony and I though, was handing him over to the surgeon. He was this little thing in this incubator and we just had to let him go and pray for the best. Those 5 hours were excruciating. We had family around us the entire time. We prayed and prayed and kept the faith that eventually, Michael would be returned to us.”
Michael’s condition didn’t just impact Anthony and Jessica. This really rocked their entire network of family and friends. “The thoughts and prayers we received from our family and friends here in Australia, and from around the world was amazing. What was more amazing though, were the little things from the people from HeartKids. We had no idea who HeartKids were until we got to The Grace. They were amazing. They had somehow managed to touch the lives of all of these little kids and babies, it just made us feel that we were not alone and there were these wonderful strangers out there looking out for us. It was approaching Christmas time and they left this Christmas hamper for us. It was not expected, nor was it necessary. But this is just how thoughtful they were. They just wanted to make sure that all the boxes were ticked so that we could focus purely on Michael”.
Thanks to the amazing team at Westmead Children’s Hospital, Michael survived the five-hour surgery, battled through his first couple of nights, and slowly started having various tubes and wires removed. Michael’s first Christmas was spent in PICU instead of at home with his family. “It was not how we envisioned his first Christmas. When we got back from Church, the nurses had dressed him in this little Christmas outfit we had planned to have him to wear on the day. I was so grateful for the gesture.” Jessica recalls.
"HeartKids go about their business supporting each and every family and we will be forever grateful to them.”
“We count our blessings every day and are so thankful for the emotional support we received from HeartKids and the hospital staff. Michael’s Heart beads are on display in our home for all of us and represent a significant time for us. So many families go through these sorts of life changing events and it’s amazing how organisations like HeartKids are there to provide support and assistance. We were lucky to have family and friends all around us but we saw so many families doing it tough during our time in hospital. HeartKids go about their business supporting each and every family and we will be forever grateful to them.”
“Every day spent with Michael now is just the most amazing gift. We know we were very lucky that Michael’s journey was a quick one. There are families out there that aren’t as lucky as we were. This is why it’s critical that the HeartKids continues to do the work they do. Every Christmas we reflect. Not only are we thankful for coming out the other end, but also acknowledge the families that are still going through it. It’s amazing meeting the families who have been through what we have and sharing stories. HeartKids provided us a mechanism of connecting with other families and helping out wherever they can. Being a parent is hard. Being a parent of a sick child is harder. Being a parent of a sick Heart Baby is made that little bit easier thanks to the work of HeartKids” says Jessica.
As a friend of HeartKids, will you give a special Christmas gift this year to help provide Christmas Cheer to around 200 families who will be spending Christmas in hospital?