Monday, April 20, 2020

Father of a Heart Warrior: Reflecting on the First 15 Months

My name is David Chalmers, I am 38 years old and the father of two children.

Four years ago this is a sentence I never would have imagined I’d be writing. For the first 34 years of my life I was single. Not even close to being in a relationship. Then Sharon came along, we clicked and it's fair to say things happened pretty quickly.

I love kids and I have spent my adult life working with and impacting other people’s children as an uncle, teacher, basketball coach and Compassion International sponsor. Having my own children was never really a dream of mine, but if it happened I figured I would certainly embrace it.

I get told off for saying this, but I do not consider myself a ‘baby person.’ I can’t stand the hands-on mess; I can’t do the ‘goo-goo-ga-ga’ thing, baby cries give me literal tension chest pains. I prefer interacting with children who can walk, talk and are toilet-trained.
Sharon and I were married in September 2017 and in April 2018 we found out we were expecting our first child. Everything progressed normally until the 20-week scan in August. Our baby was not sitting in the right position for the medical people to find what they needed to, so they asked us to come back in two weeks. The next scan took two-and-a-half hours. We found out we were having a boy, and at the end a radiologist came in and said “We’ve detected a problem with your baby’s heart but we’re not 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 as we tried to process our new reality and what life was going to look like.
The day before the second scan Sharon and I were celebrating our wedding anniversary in Ballarat, and we went to a church called Kardinia Church. They played a song called 'Take Courage' which neither of us had heard before and it impacted us both separately. The very next day we found out about Joshua's heart condition. We were convinced God had given us this song for Joshua and we sang it to him all the way through the rest of the pregnancy and after he was born. We still struggle to sing it without crying, because of the significance of it and what it means to us.

Strength, courage and hope were themes that we felt God gave us during this time, so we named our boy Joshua after the leader of God's people in the Bible. A significant verse for us was Joshua 1:9: "Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Our boy has proven to be just that, enduring more in his first few months than most adults do in our lifetimes.
We were then booked into a more detailed fetal-echo scan at Sunshine Hospital which ended up being one week later. At this appointment we were sat down by the cardiologist and he informed us that our son had one of the most serious and complex congenital heart conditions, called Hypoplastic Left Heart Syndrome (HLHS). This basically meant that the whole left side of his heart was underdeveloped and not working, and the right side would have to do all the work pumping the blood around the body. It would require a series of three open-heart surgeries, and the current life expectancy is mid-thirties.

We were immediately and directly given three options: termination, comfort care (no medical intervention, leading to inevitable death) or the three open-heart surgery path. We wanted to give our boy the best chance of survival, so we chose the surgery path.

An induction date was set for January 2nd (we were telling people ‘early January’) at the Royal Women's Hospital 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. 

The next morning I arrived back at the hospital at around 8am, to find a team of about 10 doctors/nurses around our boy talking about what to do next. It was pretty clear they wanted to do the first open-heart surgery, also known as the ‘Norwood operation,’ as soon as possible. Within about an hour of me arriving there, he was out the door. 17 hours old and about to undergo an incredibly risky and life-threatening open-heart surgery.

Thankfully Joshua made it through the first hurdle, and he encountered and overcame many others along the way. In the first couple of months he was treated for left diaphragm palsy, collapsed lungs, pneumonia, a nasty gut condition known as NEC. He was in Rosella ward (PICU) for four weeks before being moved to Koala ward. Joshua had his second open-heart surgery (Bidirectional cavo-pulmonary connection, or BCPC) at three-months-old and had a scary week in PICU before recovering well and we went home three weeks after the surgery, for a total of 111 days in hospital.

One of the hardest things we experienced early on was: because of Joshua's precarious position after the first surgery, we weren't able to hold our boy until he was ten days old. The first hold was incredibly precious. We'd both waited so long for this.

I struggled to bond and connect with Joshua right from the start, and this can be put down to any number of excuses/reasons: not being a baby person, not being truly prepared for fatherhood, lingering trauma from seeing my boy incapacitated and connected to all manner of tubes and wires. I recognised the importance of those first three months and I limited my working hours to make sure I was present. However while I might have been present physically, I mainly dealt with the trauma by withdrawing and not really engaging with family/friends/hospital staff who were trying to support us on our journey.

I genuinely hated myself for the lack of bond/connection I felt with Joshua, especially since the more he grew, the more obvious his love and adoration was for me, and I couldn’t return that feeling. I felt like the more I said “I love you” to him, I’d be able to convince myself I actually did. I compensated for this lack by focusing on Sharon and making sure all her needs were met while she was caring for Joshua in the hospital. I was doing the husband role well, but felt that I was lousy at the father role. After 34 years of being single and only responsible for myself, I found the joint father/husband expectations too much to bear.
As hard as 111 days in hospital was for us, looking back there were some amazing positives. As committed Christians, when we found out about Joshua's condition we asked the usual "Why?" questions but also hoped that God would use our situation to impact and inspire people, and bring some good out of it. He sure did.

* We were beneficiaries of some amazing organizations including The Royal Children's Hospital, Ronald McDonald House, HeartKids and Finnan's Gift.

* We were given several opportunities to share Joshua's story publicly via television, newspaper and internet blogs. We did so in order to promote these organizations and congenital heart disease (CHD) research.

Kidspot Article, February 2019

Yahoo7 Article, June 2019

* Joshua took part in several medical research projects, the results of which would be used to help other children like him.
* We met and connected with several brave and courageous families whose children were in even worse situations than Joshua, including waiting for a heart transplant. They were a great source of comfort and knowledge for us as we started the journey later than they did.
* We were in hospital at Easter and were able to experience the Good Friday Appeal, meeting some very special people and sharing our story.

We were finally able to take Joshua home on April 24th, only to be readmitted three days later. On April 30th we were back home a second time. We made the decision to get Joshua out and about right from the start, rather than wrap him in cotton wool like some parents of sick children do. We were never irresponsible and always took proper precautions, but seeing as we honestly didn't know how long we had left with him, we wanted to allow him to experience as much of life as possible.
Special early outings included:
* Church
* Playgroup
Lah-Lah concert
* The VFL Football
* The Big V Basketball
* Watching Daddy coach his Under 10 Girls basketball team
* Disney on Ice in the city
We went on special walks and raised money for HeartKids and Finnan's Gift in the Melbourne Marathon. Later in the year we also went to the Aquarium for my birthday, and Melbourne and Werribee Zoos.

On May 12th, which was Mother's Day, we had Joshua dedicated in our church, Werribee Baptist Church. This was a very special and significant event for us, as our church family had been an invaluable support for us and we were finally able to introduce them to Joshua. It wasn't a sprinkling, baptism or christening. Nothing magical about it. Merely getting up in front of people who were significant to us and declaring and acknowledging that Joshua was our miracle boy, a gift from God for us and we wanted to dedicate him for God to use how He wanted to. It was also the first time all my immediate family and many of Sharon's family were all together in the same place since Joshua was born.


When we left the hospital we made a commitment to support the organizations that supported us. On September 8th, the wonderful support organization HeartKids held their fundraising walk "Two Feet and a Heartbeat." Our incredibly generous family and friends helped raise $1100 and a small group of us walked 4km with other families affected by CHD. At the start of April this year we were asked to film a short video message to raise support for HeartKids during the Covid-19 global pandemic.

One amazing connection we made that came completely out of the blue for us was Finnan's Gift. Winter Olympics gold medallist Alisa Camplin-Warner and her husband Oliver lost their first child Finnan to a CHD when he was just days old. They turned their tragedy around and used their significant influence to start a charity to raise money for a different piece of medical equipment for the Royal Children's Hospital each year. We found out that during his time in hospital Joshua had been the beneficiary of six of the past eight Finnan's Gift donations.

Every year they hold a fundraising launch and presentation where they present the cheque from the previous year and set the goal for the next year. Our names were put forward by our amazing cardiologist Ass. Prof. Dr. Michael Cheung and we were asked to be guests for the 2020 launch, I guess to 'put a human face' to the occasion and make it real for potential sponsors and donors. We attended a special morning tea and were interviewed by Alisa and then Channel Nine News afterward. We were able to share a bit of Joshua's story and the impact the the RCH and Finnan's Gift had had on our journey AND Joshua had his first ever play in a sandpit in front of TV cameras!

This connection continued in October when we joined Team Finnan's Gift in the Melbourne Marathon, doing the 3km walk. It was a very special experience and was Joshua's first time on the mighty sports stadium the Melbourne Cricket Ground.

One day in May, Sharon sprung a surprise on me: “So…I’m pretty sure I’m pregnant again.” This hunch proved to be correct after a couple of positive tests and a doctor visit, and all of a sudden we were expecting another child. For quite a while there were mixed feelings about our new arrival; partly because of the chance we may have to go through the “Joshua journey” again and partly because we both knew I was not coping with one baby, let alone adding another one in the mix. Thankfully we were able to establish our little girl was heart-healthy. Nevaeh Joy was born on February 7th 2020, exactly 400 days after Joshua.

The first four months at home were tough, mainly thanks to me and my reluctance to help with caring for Joshua’s physical needs. I left it up to Sharon as the mother, while I focused on providing for the family as I believed a father should. Joshua came home with an NG tube and was on four different medications daily. Sharon had made the effort while we were in hospital to learn how to deal with these things so she was equipped for it; I had not.

I knew I was struggling with everything involved with being a father. Whenever I would look at other fathers with their kids at the pool or the basketball, instead of a sense of anticipation and excitement that “That will be us one day,” I felt nothing, and it killed me. Whenever I would try to be honest about my struggles, whether publicly on Facebook or privately to friends, I would be shut down by “Don’t be so hard on yourself” or “You’re doing a great job!” even though I (and Sharon) knew I wasn’t. Social media allows a person to paint a different picture to what is actually going on behind the scenes, and that is what was happening with us.

The turning point came when our Pastor, in an effort to ease my fatherhood self-doubt and insecurity, put Sharon on the spot after church one day, asking her “So what do you think? Is he doing a good job as a father?” She shrugged and answered, reluctantly but honestly and truthfully, “No.” She knew I wasn’t and although I knew I wasn’t and felt a bit vindicated by her response, it was still a kick to the guts to hear that from her. Our Pastor was taken aback by this honesty and said “Wow, I hoped I’d get a different response than that.”

I stewed on this for days and it was the kick up the bum I needed to become more involved. A change in attitude and perspective was needed on my part. I gradually started changing nappies and doing the late night medications to give Sharon a rest and just generally helping out more, like I should have been doing in the first place. Funnily enough this drastically improved the tone of our relationship and home life.
Joshua turned one-year-old in January 2020, and we were able to have a big celebration with family and friends, some of whom travelled four hours to be there. The day of the party (January 4th) was also Joshua's "Heart-versary" (one year since his first open-heart surgery), so it was made even more special and significant. It was quite surreal to think that in one more month we would have another addition to the family.

Up to the time Nevaeh was born (February 7th) I had not been alone with Joshua for more than one hour, purely because I (or Sharon, truthfully) didn’t trust myself to properly care for him without something happening. It was both a confidence thing and a trust thing. Both his Grandmothers had looked after my own son more than I had.

Well the time came for me to step up, and for two full days after Nevaeh was born I finally had full care of my son until Sharon came home from hospital. I was nervous and terrified, there were one-year-old meltdowns and off routines but we made it through and survived with smiles on our faces. This was a huge step for me in my fatherhood journey. It showed me that I was capable and able to be trusted.
God created our Joshua David to be a survivor and a warrior, whose battle for life has inspired and brought joy to thousands of people. He is thriving: from four medications he is now just taking aspirin and our cardiology appointments are now six-monthly. God has given him such strength and joy and I GET to be his Daddy.

I get a front row seat to a miracle every day. I get to be the first person he sees in the morning. I get to follow him around the house on his crawling and climbing adventures. I get to witness every ‘first’ and milestone.

Joshua is now a 15-month-old toddler doing normal toddler things (including full-blown, out-of-control tantrums). He loves and snuggles his 10-week-old baby sister. He climbs up on things and goes places he shouldn't. He defiantly throws his food on the floor while looking straight at us. When patience wears thin, my ultimate reminder is: Remember What He's Been Through.

Things still aren't perfect, but we are in a much better place as a family. Sharon is now able to trust me and have confidence in me to look after our babies, which for a long time wasn’t the case. We are working together very well as a team in this challenging time and we know our babies will be raised to thrive in a Godly home filled with love. Joshua David and Nevaeh Joy are safe and loved.

I still hate the hands-on messy stuff (but I do it).
I still can’t do the goo-goo-ga-ga.
Baby screams still give me tension chest pains (but I tolerate them).

But I’m doing much better and I’m doing the best I can.
Just for fun, here are some of my favourites: