Fast Confession – model Veronika Kašáková: I want a second child, the disease won't scare me off

Verunka, it's so good to see you after such a long time. What are you doing in Prague now? Are you modelling again?

I got an offer for a lovely campaign. I always pick and choose from the offers, and this was nice, so I thought we could shoot something again and get back to our old life a bit. So yeah, after quite a while I'm back here shooting.

It's not that long ago. Your son's just a few months old, and I thought you, of all people, would want to enjoy motherhood.

I'm enjoying motherhood an awful lot. If my son weren't the way he is, allowing me to work, I wouldn't ever leave him. He's here with me, and I work when he's asleep. When he's awake, and it’s still just short moments in which he's awake, we're together. We have a good background here, even his grandmother is here with us, so I don't see it as me not being there for him, even during the work process.

In our "Fast confession" I asked you what the COVID gave you and what it took away, and you talked about your pregnancy. Was it planned?

Well, it wasn't exactly planned. We just thought it would be lucky if it happened, and it actually happened right away, so it was doubly lucky. It was such a surprise and we were both so happy.

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We last saw each other after you came back from Hawaii, and you had completely different plans then. Where did it break that you finally decided to settle down?

I think overall I was already set on motherhood at that point, but job offers kept coming up and my partner and I were travelling a lot as well. But even if it had happened then, that would have been okay too.

I felt a need to plan then, to have a bit of a schedule and to have a clear vision ahead of me, even professionally, so that I felt like I knew what was coming. But since a certain point, and it‘s mostly my son teaching me this, I don't plan anymore at all. It's not even possible, you live from minute to minute. I'm so grateful that we succeeded so quickly and that we have him, even though I had a different idea of motherhood. So I absolutely don't plan anymore.

How did you envision motherhood?

I imagined that at least the postnatal won’t be as filled with stress and fear...

They say that women are hormonally very unstable in the postnatal. Do you think if you'd found out about your son's illness at a different time, you'd have taken it better? What do all the hormones do, how do you manage the emotions?

I don't dare to judge. It was what it was, and I think that given how difficult it is for mothers even when a healthy baby is born, I actually handled it well. Because you can't break down when there‘s a little baby. You have to be there for him. I also had great support in my husband. I still remember the text I wrote him from the hospital when our son's diagnosis was confirmed. Back then I texted him that I did actually pretty well, only breaking down for twenty-four hours, that it wasn’t longer. It's all about motivation, in this case, the baby.

I also decided I wasn't gonna let it steal my joy of him. I freaked out at first, went through a huge shock that had phases of anger, blame and, of course, regret, but I was still so happy for him that I enjoyed him even in those crazy states of mind.

If Matýsek had been a lot fussier, as other babies tend to be, it might have been more challenging, but he‘s is an amazing baby, happy, good and a great sleeper. If it weren't for the cards we have drawn with his diagnosis, it might have been too perfect and I might have annoyed people with it.

Matýsek has phenylketonuria (PKU), where the body breaks down phenylalanine poorly and it can lead to brain damage. How do you find about such a diagnosis?

There’s this population-based screening that is done on all babies about a few hours after birth, where blood is drawn from the foot. It checks for about eight rare diseases, and phenylketonuria is one of them. I still remember the nurse coming in and asking us if she could draw his blood. So I said I guess she could, and the nurse told us that if there was anything found, they would call us, but they probably won‘t. And then they did.

Do they really check all the children, I feel like it's not talked about much anywhere?

Later, as I read all the information on it and studied it, even though I couldn't even pronounce the name of that disease properly until recently, so later I thought, thank goodness for that. That screening on babies has been going on for just about fifty years, so there are people alive who haven't been diagnosed and are mentally disabled because of it.

That's still my worst fear to this day, and when you come into the hospital six days after giving birth and you're still sore all over and they tell you all the threats, you don't hear anything else, not even that a lifetime of diet can solve it. You hear that your baby is in danger, and you feel a huge responsibility on top of that, when it's confirmed in black and white that you can't make a single mistake as a mother and you can only give him certain kinds of food.

Even now that I'm telling you this, it still makes me anxious. But I'm not crying anymore, and the sad days are getting fewer. Just yesterday I was thinking that I’m finally approaching it more as a challenge and I am looking forward to learning something new, that thanks to Matyáš I will learn to eat better myself, because he will have to eat healthy, especially fruits and vegetables. Now he‘s still on milk. He has this special preparation that’s stripped of the amino acid phenylalanine, which is normally in proteins, and then he‘s also partly on breast milk, because his body can process some amount of it.

It's a constant search for the right ratio, so I'm weighing him now and once he's older I'll weigh his food, so that he at least has what he can have and what he needs for proper development of his bones, teeth and his whole body. It's all about numbers and math. I kept telling myself that I wasn't going to deal with it for the first six months, that I won’t allow it to take him away from me, because he’s still on milk, but now we're getting close to introducing other foods and I'm pretty worried about that. But I keep following profiles of moms who have been through it and they have healthy, beautiful children and what could probably be called good life, so I figure if they made it through, I can make it through.

I don't doubt that at all.

That's what everyone says, but I don't even want to be that strong anymore. On the one hand, it's a commitment and I want to be past that tipping point where my son is healthy and thriving, maybe when he's three years old, because I guess after that three years, the mental retardation isn't as much of a threat anymore, as the nervous system is more developed. So that's the point I'd like to be at. Not that I'd get a break at that point, because he'll have to be dieting his whole life, but he won't be any longer in danger of the fatal consequences of being mentally retarded. The thought makes me sick, and I'm always horrified upon realizing that I'm really the one saying it's happening to me and that there still haven’t been enough bad things happening to me. So yeah, sometimes I pity myself, too. (laughs)

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I think you're totally entitled to that. So does this diet mean he'll never be able to eat yoghurt and cheese and things like that in his life?

He'll probably never taste, say, meat, there's a lot of protein in there.

But protein's pretty much everywhere, isn't it?

It is, and he could actually try the meat, but if I gave it to him, he can't eat anything else all day, so I have to calculate it to spread it out over the day. Yoghurt has less protein, he can have that. Now I read somewhere that adults consume maybe around a thousand grams of protein, and he can only have around two hundred with his diagnosis. So I'm going to have to measure his meals by the gram, so that he gets a balanced diet and doesn't starve. Plus, the doctor told us that if he’ll never try it, it's only good for him, because cravings are learned and at least he won't crave chocolates and sweets in general.

Chocolate has a lot of protein, too?

Actually, almost all sweets have protein in them. He'll have his substitutes that taste a little different. He can have fats, and he can have unlimited sugars, oils and water. Some kids who have phenylketonuria and don't move tend to be chubby. That's also why I keep reassuring myself that he won't eventually notice the restrictions if I keep an eye on it. Now as a mom, I can see how the food surrounds us and we need to take a stance on it from a young age. Like how other kids taste and spit out different foods, I won't let him do that. It's more of a concern for parents, but for him, it will be normal to have different eating habits. I have to keep him in check.

First-time parents tend to be quite cautious and scared of a lot of things; you've had a whole different set of worries on top of that from the start. Do you think you'll dare to have another baby?

Let me put it this way: when I was pregnant, I thought about how after growing up in a children’s home I’d be a liberal mom. I hated the regime, the rules, the way they usurped me in the children’s home. But on the other hand, nobody cared for us, anything could have happened to us. For example, they didn't even know I had a jaw infection until my whole head swelled up, then they took me to the hospital. Nobody did anything for me, yet I grew up the girl I am.

So I thought I wouldn't sweat it, and then I had a kid I have to sweat it with. I have to watch him; I have to write everything down, I have to watch what he eats, so I'm rather working on myself to not restrict him more than I need to.

But when he was born, Milan and I immediately said we wanted a second child. Actually, Milan was the one to say it, I told him that he didn't know yet how hard it would be with a baby and here he goes wanting a second one right away. He really wanted someone to be here with him instead of us one day.

But Milan already has one child, right?

Milan already has a 10-year-old daughter. We've also been talking and thinking that we could protect the second child from the disease through artificial insemination. The gene that causes it can be removed during artificial insemination, but I think we're playing god here and if I can manage it with one kid, I can manage it with another as well.

I've met moms who are expecting their second child and don't care whether they'll have PKU. That was a huge wake-up call to me. I thought to myself, we want what's best for our kids, but what if what's best for Matyáš is that he'll just eat healthily. I'm fine with him not eating meat. I have a vegan friend who I really admire. Even the body tends to be grateful for it.

The only thing that bothers me is that once he tastes the food, it puts his health at risk. It makes me angry and worried for him. But maybe there will be a cure in the future. I just think it's a shame he couldn't make his own choices, like with the meat. But maybe he already decided somewhere up there long ago that he was going to eat differently, and he's supposed to teach us that it shouldn't be all about food, that we shouldn't be killing animals for our indulgences and dying of gluttony. I'm just trying to find some kind of a moral message in it for myself.

I just saw a beautiful documentary that was about how we're hurting the planet through animals, and I was like, I'm actually proud to have a son who won't ever eat meat.

And now for something completely different... When's the wedding?

We're still engaged, and the wedding is next year. We wanted to do it when the little boy was a little bigger, so maybe he could be our ring bearer and we could enjoy it together, as I wouldn't be breastfeeding anymore. So the wedding will be next year.

And that's a sure thing now?

It's a sure thing, unless there's another pandemic. We were supposed to get married last year, but the COVID ruined that. Then I got pregnant, and I didn't want to get married pregnant, and now I don't think we can plan it on such short notice. We have friends all over the world, so we want everyone to come.

And will it be held here, in the Czech Republic?

Yeah, it will.

What are you for the summer with the baby? Since you and Milan both travel a lot and do water sports, will that limit you in any way, or will you be taking the boy with you?

At first, it looked like we might not be going anywhere for some three years, because my son has to have checkups every week now. We draw his blood every week to make sure his levels aren't high. That's exactly what I thought at the maternity ward at the time, that this was going to change our whole life. But now the hospital had good news for us and told us to fly somewhere, because he is thriving, his levels are good, and in turn, it may help our family mentally. So we're going to the Maldives for ten days.

You've been there recently, right?

We were there when I was pregnant. So now we want to take the baby boy there, because everyone has met him there still in the tummy. I'd like to slowly get back to a normal life with that as well. We've also already researched that there are Australian hospitals in Bali that have the proper facilities, and people with PKU can be found everywhere in the world, so it could always be done somehow. But we always check with our hospital first, and if they said no way, I’d just put my little boy first and I won't need anything else for at least the next three years but for him to be healthy.

So everything now revolves around my son, but at the same time, as our doctor has put it nicely, we are to adapt the diet to ourselves, not the other way around. I'm trying to kind of follow that advice, because I don't want to keep him under glass, I just want him to be a normal, healthy little boy who will just eat differently.

What about the other kids? How's the Foundation (Nadační Fond Veroniky Kašákové) working now, can you manage?

I can, we were just talking about how, within reason, although it's perhaps awkwardly put, the corona came in a bit handy when I was pregnant. We could work mainly in the online space, and it was manageable. Now it's slowly loosening up, but as long as my baby is still young, we won't be travelling as much as we used to.

But during my trips within the county, and lately even to the Central Bohemia Region, I find he‘s an amazing travel buddy. We've already been to see the kids a few days ago. But it's all baby steps, I’m not rushing anything. My son will only be a baby once, and I don't know if I'll experience that again if we have another baby. Right now I'm filled with it, I'm enjoying it so much and when I'm working all day in turn, I miss him. I'm at an age that's set for this motherhood thing. It's not a waste of time for me at all when I spend all day playing with the little one and laughing with him. It's so fulfilling. At the same time, thank God, over the last five years I've managed to get the Foundation to a stage where it can function independently alongside me and where I'm not starting new projects myself, but maintaining what’s underway already.

Verunka, thank you very much for the interview.