‘Nothing really stops him’: Four-year-old twin defies odds after life-changing surgeries
Alana Porter was told her son’s leg could “self-amputate” before birth and he might not be able to walk. Now, he is running, swimming and climbing alongside his twin brother. READ THEIR REMARKABLE STORY
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A Gold Coast boy born with a rare congenital disorder which causes major deformities to his limbs is now able to run, swim and keep up with his “best mate” and twin brother thanks to life-changing surgeries.
Four-year-old Lewis Porter was born with Amniotic band syndrome (ABS), a condition which affects 12,000 newborns worldwide. It occurs when free-floating fibrous tissue in the uterus wraps around a foetus’ limbs, restricting blood flow and leading to deformities, swelling, developmental issues, amputation – and in severe cases, death.
For Lewis’s mum, Alana Porter (41), the journey began with fear.
“The moment I found out we were having twins, I had an unsettling feeling in me … I just had this worried feeling from the start,” she said.
At her 20-week scan doctors noticed Lewis had bilateral club foot, but Mrs Porter said she knew there was more to it. “I could see the deformity in his leg on the scan. We found out a few weeks later he was affected by ABS.”
Doctors warned Lewis’s leg could even self-amputate in utero.
Since birth, he has faced countless surgeries at Brisbane’s Mater Private Hospital, starting when he was just seven months old. These operations aimed to release multiple “restriction rings” on his left leg, fingers, and toes – the bands that threatened to cut off his circulation.
Plastic and reconstructive surgeon Dr Diana Kennedy, who has performed multiple surgeries on Lewis, said the operations were critical.
“By releasing the bands, we could optimise the appearance and function of Lewis’ limbs,” Dr Kennedy said.
“Without release, Lewis’ leg, toes and fingers could have been more swollen and affected his nerves and vessels.
“There was a risk of requiring amputation if the surgeries did not happen.”
Today, Lewis wears an AFO boot daily and a splint at night. But according to Mrs Porter, his progress has been remarkable.
“Without these surgeries, he wouldn’t be able to walk – he would have all sorts of medical issues,” she said.
Now, Lewis can do everything alongside his twin brother Ethan. Mrs Porter said the boys, who shared her womb but were in separate amniotic sacs, have a special bond.
“After these surgeries, Lewis has been able to do everything his twin brother does,” she said. “He’s a little boy on a mission. He runs, jumps, climbs, swims, paints, draws, and loves playing with his friends.”
At daycare, Ethan always keeps an eye on his brother. “They are never far from each other. They’re best friends.”
Mrs Porter said swimming had once been Lewis’s biggest fear, until his physiotherapist gave him a turtle brace, which boosted his confidence in the water.
“The day he left the pool step and swam by himself with his floaty on was the happiest day for him – he couldn’t stop laughing,” Mrs Porter said. “Nothing really stops him.”
Though more surgeries are likely, Mrs Porter said she’s incredibly grateful to the surgeons and medical staff who’ve helped her son thrive.
“We’re so thankful for how far he’s come.”