Steele Serramondi’s Journey
Steele was on born on December 29, 2011, weighing eight pounds and coming three days early. We chose his name so we would forever be reminded of the Pilbara, where we lived for many wonderful years. Like most babies, Steele grew quickly, putting on weight as he also developed a happy-go-lucky personality. Along with older sister Emily, our little family was now complete.
At four months old Steele contracted the flu and did not recover. He was getting worse as time passed. We took him to the hospital, but still had no answers. At five months old we returned back to the hospital and were seen by a paediatrician Dr Salvador. In an instance it was panic stations and by nightfall we learned he had a severe heart condition. I phoned my husband who was in Perth at the time to let him know. Steele and I were flown down to Perth on the Royal Flying Doctor Service late that night and taken to Princess Margaret Hospital (PMH) where I meet my anxious husband. We met Dr Andrew Bullock 4am that morning and he explained Steele’s condition to us. At that moment our hearts stopped, we couldn’t believe this was happening to our son.
Just before Steele’s sad news, my husband Karl was diagnosed with Ross River Virus. Now, I thought, surely this cannot be happening as well.
Later that day Steele was diagnosed with Severe Ebstein Anomaly of the tricuspid valve, meaning only the left side of his heart was working properly and it was too small. The right side of the heart was also quite deformed.
It was decided that Steele would have his first surgery as soon as possible – A Blalock Taussig Shunt that would help deliver more oxygenated blood to his lungs. Steele needed to get stronger and hopefully let his heart grow. A week later the surgery was performed.
Our family relocated to Perth so we were closer to the technical help of the cardiology team at PMH. We celebrated Steele’s first birthday and prayed for many more. Shortly after, he became ill again, coughing and getting weaker. We had a meeting with Dr Bullock and he told us the time has come and we need to find a solution to repair Steele’s heart. Dr Bullock sent Steele’s file to the Eastern States as his condition was very complex and required technical support. For almost three weeks we nursed our son and waited for a reply – we were on edge. Finally Dr Bullock came told us that Dr Christian Brizard in Melbourne would help Steele. Our feelings of happiness were tinged with anxiety. We told our three year old daughter that we were going on a special holiday to help Steele get big and strong so they can play together. She replied “Steelio brother going to get big and strong like me”. “Yes” we told her with a tear in our eye.
We were flown to Melbourne on the 18th of March to meet with Dr Brizard and his team. The plan was to have Steele’s surgery done on March 20. We were told the surgery would be very complex. Usually they would perform only one procedure at a time, but Steele needed several done at once. He’s right atrium was ballooned and needed a nip and tuck, the right ventricle was too small and needed to be adjusted, the Blalock Taussig Shunt had to be removed, Atrial Septal Defect (ASD) closure to fix a small hole between his heart, and his tricuspid valve rebuilt.
At 8am on March 20 we said good luck to our little man with loads of cuddles and tears. It’s not goodbye I said to my husband as we left him in the hands of the professionals. As they walked away from us with our little man, we watched him smile and his clapping hands until we could not see him anymore.
We waited for 11 very anxious hours and started to get extremely worried. Finally, we had a call from Dr Brizard who told us the surgery had gone as planned and we would get another call to see Steele once he’d been prepped for intensive care. At 8.30pm we were finally were able to see him. We spent 3 and a half hours by Steele’s bedside and were told that he was stable and the next morning would be the critical stage.
We went back across the road to our apartment and rested, we put our alarm clock on for 4am – we wanted to be there nice and early. About 1:15am we had a call from the Intensive Care Unit (ICU) with news that no parents want to hear “Steele is unstable please come back as we need to perform another procedure”. We rushed back and the cardiology team said Steele’s heart was struggling and he will need a bypass machine (Extracorpreal Membrane Oxygenator) and only had a 50% chance of survival. We waited in the parents’ room knowing this time we may not see our little guy’s smile. Pacing up and down, seeing staff running to and fro, it was the hardest time of our life. Finally, he was stable again with the bypass machine and an open chest. He was on the machine for three days. The cardiology team had made a decision, Steele would need more surgery. Off he went to theatre again. We said good luck little man.
Eight hours later he returned to the ICU without the bypass machine but still with an open chest. The surgeons reopened the ASD closure and tightened the tricuspid chamber to perform a BiDirectional CavoPulmonary shunt. Slightly relieved but also concerned, we knew Steele still had a long way to go. Each day he improved bit by bit. Little baby steps, but one night he had a seizure. They were becoming increasingly frequent throughout the following day. His body had gone through so much stress and change that it could have been the result of the seizures. He had an MIR which revealed a few spottings on he’s brain. We were told the spots were small and could be controlled with anti-seizure drugs. The spots will always be there but may never affect to him – we will only know later in childhood.
Each day Steele improved and more medical lines were removed. He was recovering and were finally relocated to a ward. However, that night he had a high temperature and there were concerns. After several blood tests we found he had a urinary-tract infection and this was treated with drugs and monitored closely by the nurses and doctors. After several more weeks in the ward, he was recovering extremely well and we got a sight of the little boy he was meant to be. He wanted to play and be outside in the sun and on the green grass. We got the nod with smiles from the nurses. It was an awesome feeling to have him in our laps, sitting on the grass with our family watching him smile and laugh. The next two days we were flown back to PMH. He stayed there overnight. In the morning Dr Bullock and his team came in to see us, congratulate us and send us home to enjoy our time together again.
Steele has not won the battle of his condition and requires more procedures as he grows, but it does not stop the little man enjoying each day. After recently contracting a common flu, he was again admitted to PMH and almost ended up in ICU. However, he fought back and is back home. Thank you to everyone – family, friends, the dedicated doctors and nurses at PMH and Royal Childrens’ Hospital – that helped us, including HeartKids WA. We read a lot of stories from the families of heart kids and it gives us faith for Steele. HeartKids WA has been there from the first day we arrived at PMH when we were confused and lost. Thank you.