Emily was born with a rare genetic disorder known as Noonan’s syndrome. One of its features is a heart defect.
It was only through a series of medical miracles performed at The Royal that Emily survived and is now a delightful eight month old, exploring her toes, smiling, and holding her
arms out to her parents to lift her up.
Alana, a doctor, was 38 weeks pregnant when their world shifted on its axis. A scan showed her unborn daughter had fluid in one of her lungs, placing pressure on her heart.
Within an hour, she was rushed from The Royal North Shore Hospital to The Royal Hospital for Women for its special diagnostic care.
There, in the Royal’s Maternal Fetal Medical Unit, which deals with complicated pregnancies, Professor Alec Welsh operated on Emily in utero. Using an ultrasound to find her thigh, he anaesthetised Emily and drained the fluid from her lung to give her the best chance of surviving the delivery.
Professor Welsh banished any thought that her life was in his hands during the procedure. “The enormity of that concept wouldn’t help when I’m operating,” he says. “What I concentrate totally on is the technicalities, and the fact that I have a personal contract with the mother and baby to fix the problem to the very best of my abilities.”
The Royal’s Maternal Fetal Medicine Unit has been providing this kind of highly specialised care for women and families with complex pregnancies from all over the state for many years. We would not be able to ensure this expert care is provided during a highly stressful time in parents’ lives without the generosity of people like you.
“Raising funds through donations is an integral part of advancing the work we do,” Professor Welsh says. “It helps us optimise the health of babies.”
Two hours later, after an emergency caesarean, Emily was taken into the Newborn Intensive Care Unit, where she lay in her incubator, wreathed in tubes, drains and drips, fighting to live, for more than two months.
There, Alana and Ben had to brace themselves for a daily catalogue of life-threatening complications: ongoing fluid in the lungs, breathing difficulties, a potential bowel obstruction and one infection after another.
“She had so many drains and lines coming out of her that she sometimes seemed more like a science experiment than our baby. Was that really our little girl? We found it excruciating that we couldn’t hold her. All we could do was watch over her, and wait.”
At first, Alana coped with the harrowing emotional turmoil by adopting a professional approach.
“Having something like this happen is terrifying and confronting. Initially, the only way I found I could cope was to look at her as a patient, not my baby. I’d look at the medication chart, her vital signs as a way of finding comfort that she had got through another day.
That worked up to a point. But when a cardiologist told them the only treatment for Emily’s weak heart was a heart transplant, it sent them both reeling.
“We were both in utter shock,” recalls Alana. Another cardiologist would later reassure them that Emily could potentially go on to have a happy life without a transplant. Throughout this though, the cumulative stress got to her. Alana developed a stress response, tinnitus – a deafening, constant, ringing in her ears – every time she got out of the lifts at The Royal and started walking towards the NICU.
During those dark days, it was almost impossible for Alana and Ben to entertain the idea that, thanks to the complex care Emily received at The Royal, they would eventually bring her home to days of smiles and sunshine.
We simply could not support this kind of life-saving and life transforming work without your ongoing support.
Remember no donation is too large or small. Absolutely everything counts.
Today, Emily is the apple of their eyes, “her own little person”, and their days of overwhelming anxiety and fear seem a galaxy away.
Emily is busy impressing the physiotherapy and occupational therapy staff. She spends her days chatting to the family’s two dogs, enjoying tummy time, and endless cuddles.
“She is the ultimate lesson in mindfulness,” says Alana. Ben agrees, “We couldn’t be more proud of her. Every day really is a joy. We have stopped the incessant research and try and concentrate on what we can do to help Emily achieve things that allow her to be as happy as possible each day. We focus totally on the now. I just enjoy the day I have with her. We enjoy being a family unit on a day by day basis. “
The couple cannot praise the staff of The Royal enough. “It felt like they had seen so many situations like ours that were left of field, and instead of reacting to it, they just swung straight into possible solutions.” In particular, neonatologists Dr Tim Schindler and Dr Parag Mishra, says Alana, were able to “relay the truth in a sensitive way.”
When the Browns took Emily home, Sydney was in lockdown, with all the social restrictions that entailed. They only had each other, and a few friends to help them adjust. “It brought us closer together more than anything else,” Alana says. “And it’s hard to describe how intense the emotions were when our parents were finally able to meet her.”