Our little fighter
When Ben was born he took his parents on an emotional roller-coaster ride. Here Emily shares her story in the hope that others facing similar circumstances can find comfort, strength and hope.
Ben had undergone two momentous surgeries and he wasn’t yet four days old. Two more would follow before he was four weeks old.
Marc and Emily were both scared and nervous. "It is really hard to leave your newborn baby in theatre and walk away," said Emily.
"The first open-heart surgery took much longer than expected because of the rare way that Ben’s coronary arteries had formed making repair extremely difficult. Eight hours later, his cardiac surgeon breathed a sigh of relief.”
Emily and Marc remain in awe of Dr Winlaw’s creativity and skill and equally thankful for his empathy and consideration. In everyday life Emily explained, a quick phone call may seem a small gesture but for us was significant and positive moment in their ordeal.
"When Dr Winlaw took the time to have someone call us to explain that the surgery would take longer than expected, we appreciated being given that information and it is something we will never forget."
Two days later Ben’s heart was clearly not well and he was rushed to a second open-heart surgery. Twelve hours later, Ben’s coronary system had again been reconfigured and this time he left surgery attached to an ECMO—a bypass machine that would do the work of his heart, giving his body a rest and a chance to recover.
"Dr Cooper, our paediatric cardiologist, later told us that Ben had ‘the naughtiest coronary artery he had ever seen’”.
"It is absolutely amazing now, to stop and think about the skill, tenacity and sheer discipline of this surgical team desperately working on this fragile little heart— no larger than a 50 cent piece— performing intricate and unique surgeries that would save his life.”
"Because of the way Ben’s left coronary artery had formed there was so little extra material for the surgeon, Dr Winlaw, to work with he had to create functional parts and position it in a unique location," Emily explained.
"We will remain eternally grateful to everyone who worked so hard and fought for Ben. From the nursing staff, to the doctors and social workers and so many more behind the scenes people who we never saw but I know were there doing their best, playing an important role in Ben’s recovery.”
“He would not be here today if not for all those amazing people who kept trying new things and giving such a high standard of care, even when the outcome looked catastrophic. We’ve really only just started on this journey, but we know we are not alone and are thankful for the continued support.”
"Ben was four weeks old before we heard him make a sound; it was fantastic to hear him cry. Seeing all of his little face after his ventilation mask was removed was an extra bonus; he was so adorable.
"He’s still adorable and is loving life. His sleeping patterns are erratic but I think he’s just catching up on what he missed out on while comatose during his first month of life," Emily said.
Because of the complexity of Ben’s condition and the uniqueness of his heart’s reconstructive surgery Ben was being closely watched and his progress followed with much interest while he was in hospital.
As soon as he was cleared for discharge the team from the Grace Developmental Clinic stepped in to shore up Ben’s follow up appointments and facilitate referral to specialists back home. "They are an extremely professional and wonderfully supportive team," said Emily.
"I had so many questions, everything I’d been worrying about while Ben was in a coma but hadn’t yet articulated. How would all he’d been through effect his development? Would he catch up? What should we do to help?”
“These questions and many more were freely answered as the team talked about cognitive and movement aspects of his development in a well-rounded and easily digestible way. We hadn’t even left Sydney after being discharged when staff from the development team had called and co-ordinated follow up care for Ben.”
"I have to admit, once back home in Canberra time was precious and I was sceptical about the value of keeping an appointment back to Sydney with all the associated stresses that travelling with two young children brings. I should never have doubted.”
"The appointment ran like clockwork. All the team members knew about Ben and were familiar with his journey. They videoed some of the appointment and we were so impressed with their interaction and that they included Willem in the process. They maintained a high level of communication, telling us everything they were doing and why. They explained the developmental markers against which they assessed Ben, putting everything in context. They gave us the results of tests there and then and explained what they meant.”
"I couldn’t help think how far things have come in healthcare. Unlike 20 years ago, parents today are treated differently, they are part of the care team and are encouraged to ask questions, actively participate and really understand what’s going on. There is a transparency which we experienced from first arriving in Grace that we didn’t have to create, it was in-built and part of how it is all run.""Marc and I left the appointment satisfied that we had certainly done the right thing and had not wasted time coming back to Sydney. We don’t have a clear view of how Ben’s heart function will progress so it is important that he be closely monitoring.”
“Marc and I strongly believe that humans are very good at creating new pathways so we are positive and have a great deal of hope for the future. We are so glad that Ben has been invited to participate in the Grace Developmental Clinic and as we travelled back to Canberra we felt reassured about his development and were happy knowing that where he is, is just fine.”
"We’ll definitely be back for Ben’s 12-month appointment and have every intention of attending his 36-month assessment. I strongly recommend that if you are invited to receive this enormously valuable ongoing support of the Grace Development Clinic you embrace the special care offered and make the most of these opportunities."
Ben's last cardiologist appointment showed his pulmonary artery has concerning narrowing which unfortunately will need intervention within the next 6 to 12 months. We will get a clearer picture next check up but hope that a less invasive procedure, like a stent or balloon, can be used. This would help avoid more open-heart surgery until Ben has time to grow a little bigger and stronger.