Photography: Chris Stanley
In a blur of bright lights and worried faces following an emergency Caesarean section, there was a tender moment Maddicyn Brokenshire will never forget. Medical staff quickly whisked her tiny newborn son Ollyver off to be resuscitated. But as he was wheeled back to the neonatal intensive care unit (NICU) for further interventions, Maddicyn was brought over to his incubator. This allowed her to touch him.
“Ollie grabbed my finger with his wee hand for about three seconds,” she recalls.
“It was an amazing moment, like he was telling me he is meant to be here.”
It was a worrying delivery for first-time mum Maddicyn, 27, and her husband, Daniel, 29. During her pregnancy, they discovered Ollyver had a rare condition called amniotic band syndrome (ABS). It was potentially caused by a subchorionic haemorrhage that she experienced five weeks into her pregnancy.
“At our 13-week scan, we learnt sections of the amniotic sac lining hadn’t fused,” Maddicyn says.
“Although no amniotic bands were visible at that time, these fibrous strands can sometimes float freely within the womb and may wrap around parts of the baby, leading to wounds or movement restrictions.”
Early warning signs
A scan at 20 weeks showed bands were present. By 33 weeks, doctors could see indentations forming around Ollyver’s nose, eye, and ear.
“We had to wait until he was born to see how bad the bands were – we were at a super-high risk for a still birth,” explains Maddicyn.
“When Ollie arrived, we could see the tight bands wrapped around his face and head, plus the skin flap on his forehead. It was much worse than anyone first thought.”
Ollyver’s first months
When Woman’s Day catches up with Maddicyn, she’s cuddling a happy, smiley, almost-three-month-old Ollyver on the couch at their Timaru home. They are preparing to travel to Wellington for the first of several reconstructive operations he will face in his lifetime.
“We initially thought Ollie might be blind in both eyes, but now he’s started looking around with his good eye and the doctors believe he has vision in it,” she shares.
There is a team of specialists, doctors and nurses involved in Ollyver’s care, with an eye specialist coming out of retirement specifically to help.
The rarity of ABS
“ABS is so rare, even more so when it affects the baby’s face,” tells Maddicyn.
“His job is to do the very complex surgery to debride the band around Ollie’s blind eye and use it to create an eyelid.”
Medical knowledge makes a difference
Despite the long road ahead, Maddicyn’s medical background as both a theatre nurse at Bidwell Trust Hospital in Timaru and a volunteer for Hato Hone St John is a big help. It especially comes in handy when talking to doctors.
“It’s harder for Daniel as he doesn’t understand a lot of the medical jargon, which can make it scary,” she admits.
Maddicyn believes the constant stream of medical appointments, combined with her challenging recovery from a difficult pregnancy, traumatic birth and caring for a colicky baby, have left her feeling “a bit robbed” of the newborn experience.
Missing the newborn milestones
“We haven’t had a chance to do all the normal things mums and babies do yet, like join a play group,” she says.
However, she beams at how family and friends have rallied around little Ollyver.
“My friends Megan and Amber, who I met through work, have turned up almost every day, picking up the vacuum cleaner, holding Ollie or taking me out for coffee as they know I don’t like being stuck at home! “Ollie is a social butterfly too and loves the cafés. After starting his life in NICU, we think it might be the noise he likes. At home, we play NICU sounds and brown noise to help him go to sleep.”
Finding comfort and routine
Already loving his pram rides, Ollyver’s most comfortable when spending time with the couple’s “other babies”, dogs Knoxx and Maple. Receiving messages from people all over the world who are following Ollyver’s story on social media has been helpful.
Building a support community
There are already more than 600 members in the Facebook group The Journey of Ollyver (Ollie). Maddicyn started the group to provide updates for their families and to help others who have kids with the same condition.
“We couldn’t find any information about it at all when I was pregnant,” she reflects.
“We wanted to share Ollie’s progress, as well as the hope, strength and love that is helping him on his journey. “He’s already shown how brave, special and stubborn he is to have survived. I’m sure he’ll grow into a very strong and determined boy.”
To support the family, search for “Ollyver” at givealittle.co.nz.
