Highlighting foetal syndrome

Foetal Anti-convulsant Syndrome NZ executive officer Denise Astill (left) in Dunedin yesterday...
Foetal Anti-convulsant Syndrome NZ executive officer Denise Astill (left) in Dunedin yesterday with Karen Hammond and son Hartley Newell. Photo by Gerard O'Brien.

An Outram mum is teaching parents how to recognise a ''heartbreaking'' and preventable condition.

Karen Hammond (35) said she was diagnosed with epilepsy at the age of 10 and started taking the anti-epilepsy drug sodium valproate with the trade name Epilim.

In 2006, she and her partner Blair Newell (33) decided to try to have a baby and Ms Hammond visited a neurologist to ask if she should continue taking the drug.

The neurologist told her to continue taking her usual dosage.

''I did everything by the book, thinking I was doing everything right but the worst thing for me was taking the Epilim.''

Her son Hartley Newell (8) was born in 2007.

''I've known since day one something was not right,'' Ms Hammond said.

Hartley had ''jitters'' after being born and doctors reassured her everything was fine and her baby was getting ''wee frights''.

''I know now that is a withdrawal from the medication.''

Hartley refused to breast-feed and reached milestones later than expected, such as walking and talking.

Other problems included painful hips and limbs, heart murmur, noise intolerance, learning difficulties, developmental delays, problems interacting with peers and extreme outbursts.

From her own research, she concluded her son had foetal valproate syndrome and visited a paediatrician.

After further tests, she made an ACC claim based on the view doctors did not give her enough information on the risk the drug posed for her to make an informed decision.

After a nine-month investigation, the ACC accepted her claim last year.

The syndrome had ''consumed'' the family's life, she said.

''It's heartbreaking to watch your child struggle ... I know what Blair and I have been through with Hartley and I just hate the thought of other families going through the same.''

The neurologist had apologised, but the family were not laying blame and were focusing on supporting, educating and raising awareness so more children could be diagnosed.

Foetal Anti-convulsant Syndrome NZ executive officer Denise Astill, of Auckland, flew to Dunedin yesterday to talk at a public presentation today to raise awareness about the syndrome.

Mrs Astill's 13-year-old twin daughters Jazmyn and Natasha were diagnosed with foetal valproate syndrome at the age of 4.

After the diagnosis, she was ''devastated'' and blamed herself for taking the drug, but over time realised it was not the mother's fault.

''It's the medicine that has done this,'' Mrs Astill (40) said.

The twins' cases, which were accepted in 2008, were the first such cases the ACC had accepted.

Since then, the ACC had accepted another 13 such cases.

The ACC was investigating at least two cases in Otago and more cases were expected to be lodged, she said.

People could be unaware they were eligible to make a claim, she said.

ACC payments for the duration of the child's life allowed them to access services which

would otherwise be unavailable.

''It will make a significant difference to the family and the child's life,'' Mrs Astill said.

Ms Hammond agreed.

''There is no way Hartley would cope at school without a teacher's aide and ACC provides that.''

Dunedin was chosen for a public meeting today because more cases were being diagnosed in Otago and Southland than other regions, Mrs Astill said.

''There is a need.''

Foetal anti-convulsant syndrome included three syndromes with exposures to different drugs - foetal valproate syndrome (exposure to Epilim); foetal carbamazepine syndrome (exposure to Tegretol) and foetal hydantoin syndrome (exposure to Dilantin).

The greatest risk was exposure to Epilim, Mrs Astill said.

More research was needed to see if other anti-convulsants put a foetus at risk, she said.

Doctors were not providing expectant mothers with all the information available, she said.

Mrs Astill urged parents who suspected their child had a characteristic of the syndrome to come to the presentation or email her at denise@facsnz.com for more information.

Today's presentation is at the CCS Disability Action Building, 514 Great King St, between 1pm and 3.30pm.

shawn.mcavinue@odt.co.nz

Add a Comment