It was the night after our daughter’s third birthday, 20th May 2012. Our son Edward Hooper (heart kid) was ill with a cold which was becoming worse, so we raced him to the nearest hospital which was in Harvey, WA. The nurse that was on call was an old family friend and checked over Edward and straight away called the doctor in. He said it was pneumonia because he could hear that there was fluid on his lungs and was struggling to breathe on his own. We were then transferred to Bunbury Hospital’s emergency department via ambulance.
Luckily the paediatrician was just finishing his shift and was on his way out the door when he saw us pull in and he decided to check over our little boy. He checked Edward and listened to his heart, he said he suspected Edward had a heart murmur or a hole in the heart. Our whole world just came crashing down in an instant, we did not know what to do or what to think but hold our baby so tight.
I was put on the Royal Flying Doctor with Edward to be transferred to Princess Margaret Hospital in Perth. My husband luckily had his parents follow us to Bunbury so they took my husband to PMH to meet us there. Well, by that time it was 4am in the morning. We were soon very fragile, a sick little baby only seven weeks old, our daughters (aged six and three) back at home in Yarloop WA and not any answers.
By 5.30am they moved us to the ward where we managed to get a little sleep. By 9am the cardiology team came around. Dr Ramsey was assessing Edward and took us to get an ECHO done as well as x-rays where it was confirmed Edward had Ventricular Septal Defect (VSD) – a hole in the heart.
We were devastated, we kept thinking why us, we did everything right while we were pregnant, we are good parents, all these things were going over and over in our heads and the only thing that stopped us losing our minds was the welcoming help from Maree from HeartKids WA and the hospital’s social worker.
Dr Ramsey called us in and we were told that Edward needed to have open heart surgery to repair the hole or he won’t get to see his first birthday. So Edward went back to the ward and was put on diuretics to get his weight up and to get the fluid off his lungs for the surgery. We had to keep Edward well until the surgery. After blood tests and scans all confirmed his condition, it finally hit us as to what our baby now had to endure.
My husband couldn’t think, talk, sleep nor could I. We spent five nights at PMH while we got his stats under control and were able to be discharged. However, we couldn’t be in contact with many people as Edward needed to keep well for his surgery which was the 8th of June 2012.
We stayed at my dad’s in Perth, but we couldn’t have our daughters with us as it was a risk to Edward’s health. It was extremely hard being away from our daughters who were looked after by grandparents, family and friends during this time. We were extremely grateful to our family and friends who did so much for us back at home. They gave us financial support throughout this hardship. We were so very honoured, it made us so emotional, but we had to stay strong for our little baby boy.
Two weeks had passed and it was time to get to Ronald McDonald House. The day before Edwards’s surgery, we were extremely nervous about what was awaiting out little boy. We didn’t get any sleep as we were so anxious and scared, as open heart surgery was such a major surgery for such a little baby.
They had to put his heart and lungs on a bypass, which was so worrying. Also, as Edwards’s hole was right near the wiring of his heart, the surgeon was worried he might damage that when trying to repair his hole and if that was to happen he would need a pacemaker.
Well, three hours had passed – although it felt like a lifetime – but it was time to see our precious little boy in ICU unit Ward Five. It was a relief to see he was out of surgery and on the road to recovery, though it was so horrible to see all the tubes, monitors and Edward so sedated.
Edward was in ICU for three days, although it felt like he was in there for a century as we could not sleep there with him, but we were very close. Edward had come off bypass remarkably well and started breathing on his own so that was a great sign – he was recovering well.
We were moved to ward 5A where Edward continued his journey to recovery with the help from some good nurses. We were on the ward for five days and because Edward was such a speedster at recovery, we were soon discharged although we had to stay close to the hospital until his follow up appointment a week later.
We stayed at Ronald McDonald House which was such a welcoming homely place, too much to wish for when you are so far from home. A week had passed and our follow up appointment went remarkably well, Edward’s patch could come off his chest and we got the all clear to go home. What a relief: we can take our son home, we can see our daughters, and we can just go home!
It was hard coming home back to reality, but it was lovely to be a healthy family again. My husband, children and I would just like to thank the cardiologist team, the surgeon, Princess Margaret hospital, HeartKids WA especially Maree, Ronald McDonald House and all our loved ones, family and friends that have helped us through this hard time. Thank You.
Edward is thriving and doing extremely well nine months after this surgery. Edward had his follow up and we have the greatest news that he doesn’t have to go back for anymore check-ups for another two years.
We are so very proud and what such great news for Edward for his first birthday, which he has just celebrated on 30th March. We hope our story can help other families and let them know that they are not alone. There are other families out there that have been through the same and are just so wonderful to meet. To be a part of their lives, it really is special and is so good to hear and see their heart child becoming more and healthy each day.
We thank you all for your generosity.
Murray, Chloe, Talisha, Laylah and heart child Edward Hooper.