Jane will never forget the heartbreaking moments that made up the first 48 hours of Lea’s* life.
Born with a number of health concerns including oesophageal atresia, anorectal malformation, congenital heart disease, as well as limb and vertebral abnormalities, Lea required immediate lifesaving care at the RCH.
“Our world was shattered. We had a great day of labour, just regular people getting ready to see our baby, when our first hard decision was to have an emergency C-section. The second shattering realisation was that our baby had some birth defects. We couldn’t hold her as she needed care right away, we had no idea when we’d see her and I couldn’t stop crying.”
Rushed to the RCH Newborn Intensive Care Unit (NICU), Lea spent three months there while she underwent several emergency surgeries. During her first surgery, Associate Professor Sebastian King connected her oesophagus and stomach so that she could feed. During the same operation, Lea had a colostomy formed so that she was able to pass stool. In a subsequent operation, A/Professor King completed a complicated repair of her anorectal malformation. Lea also underwent surgery to repair her rare heart defect.
“Lea had a very rare malformation, where her rectum was abnormally inserted into the back wall of her vagina. This requires a delicate separation of the two structures, and formation of a new anus that Lea will be able to control for her rest of her life,” said A/Professor King.
As Lea recovered well from her surgeries, she was discharged from NICU and able to come home for the first time.
“Until I saw her bags packed, I never imagined it was going to happen. Walking out of the hospital doors with my baby was an incredible feeling. My heart was filled with happiness that we had done it, we got through and she was finally going home. But, as excited as we were to finally bring her home, we were equally terrified. All of the care at the hospital had now become our responsibility and we were looking after a nasogastric feeding tube, colostomy bag and managing her health. I didn’t have a nurse by my side in case something went wrong, and it was stressful and draining. However, we could see that she was gaining strength and growing. She was a happy baby and that kept us going.”
Lea continues to be cared for at the RCH by doctors like A/Professor King to ensure she remains a healthy little girl.
“We have been so fortunate to have such absolute sincerity from our carer Sebastian. I say carer rather than surgeon or consultant, as he has done more than those titles suggest. Whenever we needed to see him during any of our stays, he was always there as quickly as he could be. Sebastian’s care for Lea has been paramount and for this we owe him a debt of gratitude.”
In addition to A/Professor King, Lea sees nine other specialists and has had more than 80 hospital appointments over the past three years. Her care is coordinated and streamlined by RCH Complex Care, a service specially designed for ‘frequent fliers’ like her.
As Lea grows, doctors will continue to monitor her heart condition and her tethered spinal cord will be operated on before she begins school. At home, Jane must be careful about what Lea eats, as her oesophageal condition puts her at serious risk for a life threatening food obstruction. Lea’s bowel condition will require ongoing care from A/Professor King until she grows up.
For this dedicated care, and for the generous supporters who help make it possible, Jane is eternally grateful.
“By supporting the RCH, you are directly supporting our child. Our lives would be completely different if we didn’t have access to this incredible place. Lea is thriving thanks to the donations collected, which support Sebastian as he puts together a complex colorectal clinic. We know that, with the team he is assembling, he will help our daughter and other children live happy and healthy lives. Anything that anyone can give to support that is helping shape Lea’s future and improve the quality of life of any child born with similar issues.”
*Name has been changed to protect privacy