A New Zealand family is facing ongoing medical costs after their son was born with a rare condition – requiring surgery, and help from specialists across the country.
Madiccyn Brokenshire, 38, and her husband Daniel, 30, found out their eight-month-old son Ollyver was battling amniotic band syndrome while she was pregnant.
The rare condition occurs when fibrous bands from the amniotic sac wrap around parts of a developing baby in the womb.
Madiccyn told the Daily Mail the condition had developed after she had experienced a suchorionic hemorrhage – described as bleeding between the gestational sac and the uterine wall.
Symptoms of a suchorionic hemorrhage include vaginal bleeding or spotting, and abdominal pain.
Doctors discovered shortly afterwards Ollyver had been battling amniotic bands – the fibrous stands of tissue which had been detached from the inner amniotic sac.
While the bands can be free-floating, they can also wrap around developing limbs, digits or other body parts, restricting growth or causing deformities or loss of function.
Financial strain
In Ollyver’s case, the bands have affected the development of one of his eyes, causing blindness due to the condition.
The bands formed around Ollyver’s head and face – a location which is rare for the condition. According to the family’s Givealittle page, Ollyver’s case is so rare, very few documented cases exist worldwide.
The family has seen specialists across the country to help Ollyver, and the Timaru-based couple have described the financial strain of the ongoing medical appointments, travel costs, surgeries and household expenses.
Madiccyn told the DailyMail Ollyver had some areas of skin which could not fully form before he was born. This included his eyelids, and the back of his head.
He has now undergone several surgeries to release bands and to create eyelids. He will also eventually need a prosthetic for his blind eye, she said.
"Surgeons attempted to correct his ability to close his eyes by pinning and suturing the eyelid higher, but it wasn't successful, so they will continue to adjust this over time," she said.
While Ollyver could also have struggles with both depth perception and balance, the couple have already found support services to assist.
On the Givealittle page, the family said their fundraiser would allow them to stay by Ollyver’s side, without the pressure of rushing back to work too soon.
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