Our little boy was diagnosed with one of the most complex forms of Congenital Heart Disease (CHD). As the cardiologist sat in front of us and began explaining his diagram, David and I sat there silently trying to listen and take it in and remain in control emotionally.
You know the saying ‘you could hear a pin drop’? It was like that. We could hear the seriousness in his voice and it shook at times. There was so much to take in, I had no words. I remember the words very clearly, “This is a very serious condition.”
He went on to say what he needed to say to all families in this position giving us three options- Termination, comfort/palliative care meaning no intervention would take place after his birth and he would not survive or a pathway of three surgeries (Norwood within 72 hours of birth, Glen/BCPC at 3 months and the Fontan around age 4) if eligible.
David and I were on the same page. Termination was not an option for us and we wanted to give our baby the best chance at life and we believed that was to follow the pathway of surgeries. David and I have a firm Christian faith and we believe that God had a plan. Of course, we questioned ‘why this?’, but we held onto our faith and found comfort knowing that no matter what, he was in God’s hands.
It was suggested and highly recommended that I had a test called an amniocentesis which would confirm whether there were any chromosomal abnormalities and fetal infections. The results of this would give a further indication as to whether he would be able to have the surgeries or not. Thankfully that one came back all clear.
My husband is one to research things and reach out to others and through his research. We were soon connected with support groups via Facebook specifically for his condition, and also a couple of groups for parents of heart kids (there is a very long list of different forms of Congenital Heart Disease).
Our support network began to grow immediately inclusive of connections with friends and friends of friends who have faced the CHD journey themselves. One of our biggest supports right from the very beginning is the organization called HeartKids. They provide dedicated support and information for parents and caregivers, young people and adults living with CHD, and heart angel families who have sadly lost a child to CHD. You can read more about them at www.heartkids.org.au
When he was diagnosed, we were also informed about a new research project that our baby would be a candidate for known as the stem cell trial. This was for HLHS babies, where they take their stem cells from the placenta at birth and place them in the heart during the first surgery. They were looking at whether this would help the heart to recover better and stronger. We were given some information to read before making a decision. We decided to take part because anything that would possibly help our baby was worth it, as long as it wasn’t something that would harm him in the process; which this would not.
Due to the complexity of his condition, my care needed to be transferred across to the Royal Women’s Hospital and I had regular appointments and ultrasounds in the lead up to his birth. He was going to be born at the Royal Women’s hospital and stabilized in their Neonatal Intensive Care Unit. As soon as he was stable enough, he would be transferred across to the Royal Children’s Hospital, which was just down the road.
It was recommended to us that we organize a tour of both hospitals to familiarise ourselves and help make it a little less scary when the time came. We were shown through the wards; and over at Children’s we were introduced to a social worker (there is always one assigned to every family), our nurse care managers on the ward, and the Pediatric Intensive Care Unit (PICU).
In PICU, we were shown where he would be connected up to numerous tubes/lines, and were also introduced to the head cardiologist who would oversee our time living in the hospital and beyond as an outpatient. He was also in charge of the stem cell research project that we were invited to be a part of.
It was all so much to take in; however, finding out before he was born gave us that time to prepare ourselves as best we could. Nothing can really prepare you fully for the journey ahead, but we are thankful we had the opportunity to do so.
The safest thing for our baby boy was to stay growing in my tummy for as long as possible, but it was dangerous to go over the Full-term pregnancy of 40 weeks. I was booked in for induction at exactly 39 weeks and had regular appointments leading up to this. Our miracle baby boy Joshua David Chalmers was born on 3rd January 2019.
To read part one of Joshua’s story click here. You can read more about Joshua’s condition HLHS, at: https://www.rch.org.au/cardiology/heart_defects/Hypoplastic_Left_Heart_Syndrome_HD/
Stay tuned for the continuation of our story!
