Ministry of Health working with FACSNZ to raise awareness of Foetal Anticonvulsant Syndrome

The medicines you take to stop seizures, keep your feelings steady, or help with ongoing pain are really important.

They help you stay well and live life how you want.

But did you know that if you take them while you're pregnant?

Some of these medicines can do seriously bad things to bubs.

That doesn't mean you should ever stop taking them without talking to your doctor.

But it's important you have all the facts.

I know you're probably not even thinking about that stuff right now, but later on, if things start changing your healthcare professional is the best person to help talk through all your options and make a plan that's right for you.

If you need to adjust your meds, it can take time, so it's a good idea to have that kōrero early.

Make sure you check in with your doctor once a year to keep your medicine plan up to date, and if you’ve started getting your period, don't wait!

Get on to it and book a time to see them now.

They're here to help.

So my name's Jacki and I'm 57 years of age and I have epilepsy.

I have two sons, Michael, who is 25, and Matthew who is 23.

So Matthew, he has been diagnosed with Foetal Anti-Convulsant Syndrome.

He has multiple heart conditions.

He has an intellectual age of about a one-year-old.

When I wanted to get pregnant, I actually went and saw a maternal foetal medicine specialist, and I asked him at the time, was it okay to be on Tegretol for my pregnancies if I ever got pregnant?

And he said, that would be fine.

The only thing I would need to look for would be if I had cleft lip or palate with any children.

We're always taught that breast is best and I was breastfeeding Matthew.

But from very early on, and I'm talking about weeks into his life, I started to notice that he was getting drowsy.

And then we had issues where he actually stopped breathing.

I would take Matthew to a specialist, whether it be a neurologist or his paediatrician, kept saying to them, there just seems to be something missing.

Surely there is something that's causing all of these conditions.

So when I did actually finally find out about FACS (Foetal Anti-Convulsant Syndrome), it was like this was the last piece of the puzzle.

What I have found for myself and so many others is that people would always say to me, did you smoke during your pregnancy?

Did you drink alcohol during your pregnancy?

But no one ever said to me, what are the medications that you were on during your pregnancy?

I think it's really important that healthcare professionals know that women are very open to hearing what is actually going on with their own bodies, with actually the medications that you want to prescribe to them and be frank and open with them.

Sit down with them and say, this is a medication I want to put you on and this is the risk that we're looking at.

These could be the possible interactions.

And then ask them what their questions are.

Are they okay with that or do they want to look at some other options?

I think it's really important for a health professional when they're talking with their patient.

If they're looking at putting them on a new medication, here's some information.

I'm gonna print this out for you.

I'd like you to take this away, have a read of it, and let's make another appointment, say in a week or a fortnight.

And then we can actually go over it again and see if you're comfortable with that.

Or are there some other options that we need to look at?

And it should be really important for them to feel that they can actually bring in a support person, whether that be a family member or a friend.

My GP and my son's GP, he's just been so supportive and Matthew loves him.

We, I go to the GP, I said, we're gonna see Dr. Paul.

And Matthew goes in with a big smile.

He's so respectful of Matthew.

He makes the time for Matthew. He treats him as a person.

He always shakes his hand.

He tells me I'm a great Mum and that I'm doing a wonderful job.

My name is Jackie and I'm from Levin and I have five children that have been affected by Epilim.

I have epilepsy. A pediatrician started me on Epilim.

It was just really affected my whole life.

And I was only a teenager.

When I was pregnant, yeah I had a conversation with a doctor.

And he put me on Folic Acid to go with my Epilim and he said there's some slight chance that your baby could have things wrong.

There was lots of things wrong with my children.

Jacob was having a lot of school issues. He wasn't talking or communicating properly.

Po, he did a lot of ASD-like trait things, like he would line toys up.

And Tewaikohai she had quite a few surgeries on her eyes.

Boston, he's also got a brain tumour. So we have been going back and forth to Starship.

I think a good conversation with a doctor would be, explaining maybe more in depth about what really could happen.

I think if they had of told me when I was 14, when I first found out like, I was only told you know, don't swim, don't drive. Nothing else.

But I think if I had known anything about babies and pregnancy I might have went 'umph', maybe I'll hold off or maybe I'll look into that a bit more.

It's important for women to have this choice so that they can make that choice themselves, they need to think about their life and what's going to look like.

But they need to know. They need to know.

My name's Alicia.

I am 22 years old.

I work at Will & Able and it's a job that creates opportunities for disabilities to have a job and to earn money and know what life is about.

My syndrome is Velocardiofacial syndrome, so it's a really rare condition and my mental health has affected a big part of my life.

The medicines that I take is Escitalopram and Paroxetine and Quetiapine.

One of them is also an anti-depressant epilepsy medication, even though I don't have epilepsy. I found out about FACS through my friend Natasha.

I've only, over the past year, discovered what my medications do from my doctor, so the risks and benefits of my medications, I don't actually know the full side effects of them, but I do know that if I stop taking them, then I will go back to where I was.

To effect babies and pregnancy with my medications, no.

My health professionals just haven't really gone down that path with me.

I feel like doctors can make life a bit easier for their patients.

They can give you an opportunity to decide whether or not you want to take this specific medication.

It's your body and you should know what you're putting in your body.