Joshua David Chalmers HeartKid Journey
Part 1 – Diagnosis to Birth
My name is David Chalmers and I am a 38-year-old father of two from Werribee in Victoria. Over the last 15 months my wife Sharon and I have been on a journey we wouldn’t wish on anyone, but one that is all too common, with thousands of people treading a similar path every year: our son Joshua David was born with an incurable and complex congenital heart disease (CHD). While our story is only just beginning and I know that every CHD story is different, I have been given the opportunity to share a bit about what we’ve been through so far in the hope that it might impact, inspire and help people who are going through a similar experience.
Sharon and I were married in September 2017. We had both devoted our lives to caring for other people’s kids: as an aunty/uncle, teacher, early childhood educator, basketball coach, dance teacher and sponsors with Compassion International. Thus it followed that having a family of our own was going to happen at some point. In May 2018 we received the exciting news that Sharon was pregnant with our first child.
Everything was progressing as expected when we went for the 20-week scan in August. I really wanted to find out the gender of our baby and Sharon kindly agreed, so it was at this point we found out we were having a boy. He wasn’t sitting in the right position for the sonographer to get what they needed, so we came back for another ultrasound two weeks later. After a two-and-a-half hour appointment, the radiologist indicated there was a problem with his heart but they weren’t yet sure of the extent of it.
It’s fair to say we were shellshocked. After leaving the medical centre, all we could do for 20 minutes was hold each other and pray. We informed our siblings and their families of the news by phone and asked our parents to come around so we could tell them in person. Many tears fell in those first few days.
Sharon and I are committed Christians, so naturally we wrestled with the inevitable ‘Why?’ and ‘How could this happen to us?’ questions but right from the start we knew this was our opportunity to live out our faith and we believed God would bring something good out of a horrible situation. Over the next few months we relied heavily on our faith and our church family who supported us in a big way.
At 23 weeks we were referred to Sunshine hospital for a foetal-echo scan, which is when Joshua was officially diagnosed with several conditions including Hypoplastic Left Heart Syndrome (HLHS), Unbalanced AVSD and Aortic Valve Atresia. We were sat down by the cardiologist and shown a diagram ‘This is what a normal heart looks like, this is what your son’s heart looks like.’ Basically the whole left side of his heart was underdeveloped and not working, meaning that the right side had to do all the work pumping the blood around the body. Throughout our journey we have repeatedly been made aware that HLHS is one of the more complex and serious heart diseases.
As we tried to mentally process our new reality, we were informed of the three options available to us which really hit home the seriousness of what we were facing: termination, a series of three open-heart surgeries or ‘comfort care’: allow him to be born and let nature take its course without any medical intervention. Sharon and I wanted to give Joshua what we believed was his best chance for survival so we chose the surgery path. We were told his first open-heart surgery (the Norwood) would be within three days of birth, the BCPC or ‘Glen’ would be done at about three months and the Fontan would be completed at about four years of age.
If there were a couple of positives to take away from the early stages, one is that we were left with no doubt or uncertainty about the process that would occur once Joshua was born: we knew exactly what would happen in terms of surgeries. We knew unexpected things could happen in between (and they did), but my point is that at least HLHS has a clear plan of action. That was comforting for us in a time when our world was turned upside down. The other positive was that at least we found out before Joshua was born so we had time to mentally plan, prepare and process what was ahead for us. Many heart conditions are not discovered or diagnosed until after the baby is born.
Sharon and I processed and dealt with the next few months in very different ways, and it caused some conflict. I am more of a public processor whereas she deals with things more privately. I was keen to tell people and make our situation known, and talk it through with people. What I didn’t take into account was once I did that Sharon was the one who would be flooded and overwhelmed with questions and messages from people, presumably because she’s the mother. She did not cope with this well at all, and I accept I did not go about it the right way at the time.
I did lots of reading and research into what we were facing and I connected with support groups, including HeartKids, straight away. Even though it is obvious that every CHD story and journey is different, reading stories of people who were experiencing similar things really helped me process things in those early months.
Once we made our situation public one thing we did notice was that people, partly out of ignorance and maybe in their attempts to ‘soften the blow,’ were quite dismissive of the seriousness of it: ‘Ah, don’t worry about it, he’ll be okay’; ‘I know heaps of kids who had a hole in the heart and they’re fine now’ ‘My friend’s kid had exactly the same thing and they’re perfectly healthy.’ This was one reason I wanted to be public and upfront with people about what we were facing right from the start.
During Sharon’s pregnancy I was teaching a Grade 2 class. I shared about Joshua’s condition with the students, their parents and the staff of the school. We prayed for Joshua each day and enjoyed playing the weekly guessing game “How Big Is Your Baby?” from Sharon’s pregnancy App. One of my colleagues lost her first baby from HLHS and it was a blessing to have someone close who knew what we were going through and was willing to share her experiences.
December 2018 was a crazy month. We moved house and my teaching contract wasn’t renewed due to low student numbers, so on top of everything else we were now without an income. We did our best to enjoy the Christmas period with our family ahead of Joshua’s birth.
Sharon’s care was moved to the Royal Women’s Hospital and the last few months of the year involved lots of scans and hospital and medical appointments. Things were progressing well and Joshua was in good shape while he was inside Sharon. It was when he was born that his battle would start. An induction date was set for January 2nd (we were telling people ‘early January’) and a birth plan was devised: we were told to expect a relatively normal birth and possibly a short cuddle before the medical staff would need to incubate him and do what they needed to in order to help his heart. He would spend some time in the NICU at The Women’s before being transferred next door to the Royal Children’s Hospital via the PIPER ambulance.
Joshua David made his arrival into the world at 5.38pm on Thursday January 3, 2019. His entrance was quite dramatic. He was born a purply-blue colour, silent and lifeless, which triggered a ‘code-blue.’ Joshua was placed on Sharon’s chest for about ten seconds while they cut the cord and then he was intubated and placed in an incubator within five minutes. I followed the medical staff upstairs to the NICU where they spent several hours working on him and stabilising him. I didn’t ask for details but I could tell something wasn’t right. All I could do was sit and wait. Sharon came up in a wheelchair with her mum Sue to see him briefly. She was not in a good way after the birth, so couldn’t stay long.
At about 10pm Joshua was transferred to the Royal Children’s Hospital, which would be his (and our) home for the next four months, in a PIPER ambulance where they spent another couple of hours setting things up. Once again, all I could do was sit and wait. I don’t really remember feeling anything much. I wasn’t particularly emotional or upset, just numb really. Finally at about midnight I was allowed to go in and see our boy.
In that moment it doesn’t matter how many stories you read or how well you try to mentally prepare yourself for what you will see. Nothing prepares you for seeing your newborn son, unconscious and incapacitated, being kept alive by machines and surrounded by tubes and wires. However this was our new reality. I stayed for a few minutes and prayed over him, trying to take everything in and make sense of it all. That night was the hardest of my life, coming home alone to an empty house with Sharon in one hospital and Joshua in another.
This was just the beginning....
Thank you David and Sharon for sharing with all of us the first part of your journey with Joshua. We so appreciate you sharing your story so others feel less alone and looking forward to reading Part 2. - Dianna