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Home / Rotorua Daily Post

Baby born against the odds to mother with the rare Guillain-Barre syndrome

Cira Olivier
By Cira Olivier
Multimedia Journalist, Bay of Plenty Times·Rotorua Daily Post·
22 Jul, 2020 06:09 PM3 mins to read

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Stallone Edmonds Tepania with her partner Mikahere, daughter Haylah-Nix Tepania and newborn son Harken-Ali. Photo / Andrew Warner

Stallone Edmonds Tepania with her partner Mikahere, daughter Haylah-Nix Tepania and newborn son Harken-Ali. Photo / Andrew Warner

Harken-Ali was born three weeks ago despite doctors telling his mother, who has has a rare autoimmune disease, not to get her hopes up.

Harken is a biblical name, and Ali came from famous boxer Muhammed Ali; the only logical name for the baby who defied the odds at every opportunity and answered the prayers of his parents.

His mother Stallone Edmonds Tepania was diagnosed with the rare Guillain-Barre syndrome on November 23, 2018.

The autoimmune disorder, which has no known cause or cure, causes the body's immune system to attack its own tissue, leaving Stallone in a wheelchair for about six months with muscle weakness up to her waist.

Realising she was pregnant after her diagnosis came as a shock, admitting it was only after her sixth pregnancy test that she believed it.

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But doctors told her "don't get your hopes up", she said.

She said they were wary of her autoimmune disease rejecting her baby.

"Every week of the pregnancy was nerve-racking," the Edmonds Boxfit Gym owner said.

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"We expected the worst but prayed for the best."

She had ultrasounds every two weeks, countless blood tests, and was "forever in clinics" for doctor and specialist care visits.

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"It was way more emotional than having GBS because this was now my son's life on the line, not just mine."

"I had all the odds against me," she said.

Specialists helped her come up with the best birthing plan that suited her illness - a planned caesarean with an epidural.

After her baby was born and the pain-relieving epidural wore off however, she had no feeling in her legs and arms and was transferred to ICU.

"Is this starting all over again," she thought, and began to panic as the sensations were similar to those when she was first diagnosed.

It was two days before she regained the feeling in her arms and legs.

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Three weeks have since passed since her son was born and Stallone said it has been a tiring and frustrating few weeks with her legs going numb.

However, she was thankful for her husband, who did everything while she was not able to move, and her "massive support crew".

Her husband has taken four weeks off work and people have dropped off food and gifts to their home and the gym.

"There are a lot of people I don't actually know ... we don't know who's sending it, or where it's coming from, which is hard for me because I don't know who to thank."

"Our son truly is a miracle and it's been one heck of a journey."

Harken-Ali is the couple's second child. Their daughter, Haylah-Nix Tepania, was born before her diagnosis. Despite doctors telling her it would be up to a year before she could walk again, she was walking and able to pick up her first child after six months.

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