Originally published Geelong Advertiser, Saturday 7 October
Words: Olivia Shying
Dressed in frilly pink tutus, Grovedale twins Madison and Sophia will today celebrate their first birthday — a milestone doctors thought they might never reach together.
Born on October 7 last year, Madison and Sophia’s first year of life could not have been more different. Sophia was born healthy while Madison, who was just 2.5kg at birth, underwent open heart surgery when she was just a week old. Mum Hannah Pearl noticed something was not right when Madison was feeding at a significantly slower rate than her sister. Mrs Pearl believes that if Sophia had not been there, she might not have noticed Madison was sick until too late.
Mrs Pearl and husband Aiden went to Geelong hospital and little Madison was rushed to the Royal Children’s Hospital. She was diagnosed with life-threatening conditions — cortication of the aorta, hypoplastic arch, a ventricle septal defect and an atrial septal defect.
This meant a short section of her aorta was narrowed. Madison was also found to have an aorta blockage, a hole in the wall that separated her left and right heart ventricles and a hole in the wall that separates the top two chambers of the heart. At only seven days of age Madison underwent open heart surgery.
With tears in her eyes Mrs Pearl recalled how doctors did not know if Madison would survive.
“She was very sick,” Mrs Pearl said. “If I hadn’t taken her to hospital when I did she might have died in her sleep.” The twins’ inseparable bond was clear from those early days. While Madison was recuperating, doctors allowed Sophia to be by her sister’s side.
“Sophia stayed with us most of the time — Madi found comfort in Sophia and would sleep better,” Mrs Pearl said.
Madison came home for a little more than a week before an internal stitch became infected. She went back under the knife — the start of an “extremely difficult period” for the family. Doctors were initially happy with the surgery, then discovered another issue — a nerve connected to her diaphragm had been paralysed, causing her lung to collapse. Days after her second surgery, she was operated on again and spent nearly a month in intensive care before finally being admitted to a ward two days before Christmas.
On January 9, Madison came home and the family embarked on a somewhat normal life. Madison’s aortic valve is still small, and permanent paralysis to her diaphragm means she must continue intense physiotherapy. Finally together again, Mr and Mrs Pearl, Sophia, Madison and four-year-old big brother Alex will today celebrate the milestone of the girls’ first birthday.
“If this is a warning, it’s that as a parent you can never be overly cautious with a newborn. If you think something is wrong, go to the emergency department,” Mr Pearl said. The family party will be big, with hats, decorations, presents and a home visit from a petting zoo.
“It’s going to be huge. After what we’ve got through you can’t not celebrate,” Mrs Pearl said.
The generous Geelong community have donated over $6.6 million to support ground breaking research and life saving care to help kids like Madison.
If you have a business and would like to support The Royal Children’s Hospital Good Friday Appeal, contact us on 9292 1166 and we will send you a collection container, for your staff and customers spare change.