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Speaking out for Foetal Anticonvulsant Syndrome

In honour of September's annual FACS awareness month, Ki, a youth ambassador for Foetal Anticonvulsant Syndrome New Zealand (FACS NZ), is speaking out about the often unknown syndrome.

By: Chloe Willetts

Samantha Plumley and her son Ki Plumley, 14.

Ki Plumley puts the last parts of his moped scooter together and props the bike against the garage wall, the rebuild project sparked by the encouragement of his father.

Ki, a car enthusiast like his father, has a knack for pulling things apart and putting them back together, scooters included.

He hopes to work with cars one day but, unlike other boys his age, knows it will be a hard journey to get to where he wants.

The 14-year-old has Foetal Anticonvulsant Syndrome (FACS), believed to have resulted from being exposed to sodium valproate in the womb.

Sodium valproate is found in some antiepileptic, bipolar and migraine medications and, in Ki’s mother’s case, was taken in the form of Epilim for epilepsy while she was pregnant.

In honour of September’s annual FACS awareness month, Ki, a youth ambassador for Foetal Anticonvulsant Syndrome New Zealand (FACS NZ), is speaking out about the often unknown syndrome.

The Paraparaumu College student was born with an assortment of physical and developmental problems, and underwent dozens of operations as a baby.

His mother Samantha Plumley, who has two sons showing symptoms of FACS, had her first seizure at 12 and, after trying a range of medications, started taking Epilim at 19.

“No one warned me about the risks of taking it while I was pregnant,” said Samantha, who moved to New Zealand from the UK 12 years ago with her husband and their three sons, aged 22, 19 and 14.

“If I had the information, I would’ve spoken to my doctor about reducing my dose and trying to put me on another medication, which isn’t as dangerous to the fetus.”

According to Samantha, not enough information is available through the medical profession about the risks of taking sodium valproate while pregnant.

“It’s really hard to get a diagnosis.

“A lot of times it was brushed aside.

“It’s pretty devastating to find out your children have something that the medical profession isn’t really acknowledging.”

According to FACS NZ founder Denise Astill, the number of people supported by the organisation nationally – 41 – is not reflective of how many people may be affected.

“A lot of the people haven’t been diagnosed as we don’t have a diagnostic pathway in New Zealand.”

With her own twin daughters having been diagnosed in 2006, aged four, Denise tried to find support within New Zealand.

“I found nothing and so, after overcoming grief and realising that things weren’t getting any better in New Zealand in terms of informed consent, I realised it was up to me to make the change.”

In 2015, she set up the organisation, 40 years after sodium valproate was made available in New Zealand.

According to Dr Jay Marlow, clinical leader of Maternal and Fetal Medicine at Capital Coast District Health Board, FACS describes infants exposed to antiepileptic drugs in utero, who are born with congenital malformations.

“These malformations are not specific to antiepileptic drug exposure, and are more common in fetuses exposed to multiple antiepileptic drugs at higher doses.”

Ideally, she said, if a patient is on antiepileptic drugs pre-conception, they should be on the lowest number of drugs at the lowest dose.

The New Zealand Medicines and Medical Devices Safety Authority, a division of Ministry of Health, said there is a 30 to 40 per cent developmental delay in children exposed to Epilim in the womb.

It identified associated physical symptoms as including neural tube defects, cleft lip and palate, heart defects, limb defects and unusual facial features.

Samantha, whose two youngest sons “fall under a big umbrella of symptoms”, said children with FAC also display symptoms of autism spectrum disorder.

“As babies, Ki and his brother had breathing issues and weren’t gaining weight.

“They couldn’t walk, talk or crawl and had hernias and big eye and ear operations.

“No baby should have all that.”

As teenagers, along with physical defects and problems with their internal organs, her sons suffer memory loss.

“Ki’s speech isn’t very clear as he had a tongue tie that wasn’t picked up until a few years ago, and when he’s taught something, he struggles to remember it the next day.”

According to Ki, one of the hardest things is not being understood sometimes when he speaks.

“I also get quite upset easily over small things, like if I’m late to college I start panicking and crying.”

Despite his setbacks, Ki received diligence in mainstream science, hard technology and social studies recently, as well as alternative English and maths.

He put it down to hard work, determination and, foremost, the support of his mother.

Samantha, who is co-running a FACS information evening at Paraparaumu Library this month, believed other women around the country might see something wrong in their children, without knowing what it is.

“We are working hard to make sure the information is out there.

“I want to spread the word and help other mums.”

Foetal Anticonvulsant Syndrome New Zealand is holding a public meeting at Paraparaumu Library on Monday, September 18, from 6pm until 8pm.

Source: Kapiti News

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