Ted's Story

My name is Claire and I am the Mum to a very brave and strong little boy, Ted. This is his story:

Our beautiful Ted (Teddy) and his twin brother, Alfie, were born into this world on the 22nd of August 2023, after what was a difficult and traumatic pregnancy. At 12 weeks we were advised that one of our twins (Teddy) had a rare congenital cardiac condition called Double Outlet Right Ventricle, Pulmonary Atresia and a Ventricular Septal Defect. This means that Ted's two main arteries in his heart both originate in the right ventricle, with blood passing through a hole in his heart to reach the great arteries. The only chance of survival involves several major surgeries throughout his lifetime to correct his heart. Being from Bendigo, this meant all antenatal appointments, the birth, and the postpartum period was spent in Melbourne.

Teddy underwent his first open heart surgery at just 4 weeks of age to place a shunt in his heart to allow blood flow to reach his lungs. Unfortunately he sustained several major complications following this surgery, beginning at just 6 hours post op where a clot had formed in his shunt and was restricting his blood flow. Ted required immediate re-opening of his chest, was placed on life support for the next 36 hours, and was kept sedated for the next week. This was an incredibly traumatic and difficult time for our family while Ted fought his first major battle. He then spent several weeks in the Royal Children's Hospital (RCH) Paediatric Intensive Care Unit, followed by their Cardiac Ward where he developed several infections, a collapsed lung, feeding difficulties and gastrointestinal concerns. He underwent countless blood tests, X-Rays, Echos, and insertions of cannulas, drain tubes and PICC lines. More than what most people would experience in a lifetime, and more than any parent should have to witness.

After spending the first 3 months of his life as an inpatient, we received the overwhelming news that Teddy was strong enough to come home and he was able to spend his first Christmas at home with his family. In that time we have been able to see Ted's personality shine through. He is a gentle soul who is incredibly strong and resilient. He loves his family and his face lights up with a big smile every time he is around his loved ones.

Ted's time at home was not without challenges however, and he required several trips back to both the Bendigo Emergency Department as well as the RCH. In the new year Ted has started to decline again with his oxygen saturations dropping dangerously low. Unfortunately his shunt is no longer providing adequate blood flow throughout his body. Teddy was rushed back to the RCH via ambulance where he is now awaiting his second open heart surgery. This is a very difficult time for Ted who will now spend several more weeks to months at the RCH recovering, which means he is away from his twin brother as well as his older brother, Leo. Ted is only 5 months old and has spent majority of his life inside a hospital.

As Teds parents, we have been travelling back and forth from Bendigo to Melbourne for well over a year now, during the pregnancy and now to be by Ted's bedside. Not only is Ted's diagnosis incredibly upsetting and heartbreaking, but living so far away from the nearest paediatric cardiac hospital has resulted in months away from home, our family being separated, many car trips between Bendigo and Melbourne, and weeks away from work. We have relied heavily on our family to assist us with care for our eldest son throughout this time but this journey is taking a big emotional, physical and financial toll on the whole family and we have exhausted all other options as a means to support ourselves and Ted. We are now reaching out to our community for support.

With Teddy's upcoming surgery we would love any support, big or small, to help keep our little family together and allow us to continue to be with Ted as he fights these upcoming battles. For those that have had the pleasure of meeting and getting to know Ted, would know that this is all that he would want, his family by his side.

Thank you and please keep our beautiful Ted in your thoughts,

Adam, Claire, Leo, Alfie and Ted Crawley.