“What happens when we’re gone?” Renata Heusser, mother to severely ill Romeo

Renata Heusser Jungman’s 10-year-old son suffers from Dravet syndrome, a rare form of severe epilepsy which is thought to be untreatable.

The clinical course is dramatic: in most cases, epileptic seizures start within the first year of an initially healthy child’s life. Sometimes, these last so long that they cause brain damage, harming the child’s cognitive development.

As the disease is so little-known, research funding is thin on the ground. With her association, Vereinigung Dravet-Syndrom Schweiz, Renata Heusser Jungman wants to change that.

Parents who haven’t experienced what she has, might be able to guess what she goes through every day. But I dare say none of us have any idea what it’s really like.

As well as Romeo, Renata Heusser has another son, three-year-old Luca. The boys’ dad is Argentinian tango musician Luciano Jungman.

Around 11 years ago, she emigrated with him to Buenos Aires. Back then, she was footloose and fancy-free, and drawn to life in her husband’s homeland. Soon after they married, Romeo was born.

The qualified food engineer was able to continue working remotely for the technical university in Switzerland, ETH Zurich (where she still works today). She seemed like one of the lucky ones in life…

…until that fateful day, almost 10 years ago, when Romeo had his first seizure and life changed forever. It would be another 18 months before the young parents were faced with the diagnosis and knew with certainty that everything would turn out differently than they had hoped for their child.

Romeo will need 24-hour care all his life.

I meet Renata Heusser for lunch in Zurich’s university district. She seems strong, yet vulnerable – and tired.

We talk about life between hope and acceptance, between two very different sons, and between a state of emergency and a little normality.

“If you bring an umbrella, it won’t rain.”

Anna Maier: How are you?

Renata Heusser Jungman: Good. Tired. I’m actually always tired. But my body has adapted to it amazingly well. After a long trip with the kids, though, I do notice how exhausted I am.

 You flew to Argentina, where you used to live. Why now?

We wanted to go back to Buenos Aires as a family for a long time. Especially with our youngest, who had never been there. It was a trip for all our relatives who had never seen him. Only a few have come to visit.

 Romeo was born in Buenos Aires and spent his early childhood there. Can he remember?

I can’t say whether that’s true. But what was wonderful was, that I got the feeling the music awakened memories in him. We stayed with my sister-in-law in our old home. Although I don’t think Romeo remembers it, he remembers the music. There are little musical carousels on lots of playgrounds in Buenos Aires. The music made him so happy, even as a small child. It seemed like he was having a bit of a comeback.

What did you have to prepare for the flight?

Romeo’s doctor wrote us an emergency protocol in English for emergency services and medical staff just in case. And we took oxygen with us. But as the flight attendant so neatly put it: “If you bring an umbrella, it won’t rain”.

If Romeo had had a seizure, would you have been able to give him his medication yourselves or would you have needed outside help?

It always depends on the length of the seizure. We have emergency medicine we always give him if a seizure lasts longer than three minutes. If it doesn’t stop, that’s a problem on a plane. Although we have two ampules of medication we can give him, we can’t administer these ourselves. That means we depend on any trained medical professionals who might happen to be on the plane or the possibility of an emergency landing.

Do you have to let them know about this possibility before you fly?

We let them know we had oxygen with us. And for long-haul flights, when get on the plane, I explain it to the flight attendants in detail, just so they’re aware of it. Then we have other medication: since Romeo mostly has severe seizures when he as a fever, we give him a fever-reducing medicine before the flight.

It seems like you brought a little clinic with you.

Yes. The only thing in my hand luggage that was mine was my sleep mask. The rest of the space was full up with Romeo’s medication. We had everything we needed for him for three weeks in there. My bag was overflowing.

But the flight went smoothly?

It all went fine, yes, both flights.

“The dream of living in faraway places is just gone now.”

Before Romeo was born, you lived in Argentina, your husband’s homeland. You had to abandon this life, as it was easier to get Romeo the medical care he needed in Switzerland. What was it like to return to a place where a dream was cut short?

Tough. At least partly. It was a long time ago. We rented out our home at first. We’ve only just sold it. That felt like a “definitive” ending. On the other hand, I know that life is better for us here as a family. The Swiss climate is ideal for Romeo.

Can the heat in Buenos Aires cause a seizure?

Yes, the heat and humidity. That’s also why we went in spring instead of summer. Although there was a massive amount of rain, since it was fall in Buenos Aires, the temperatures were better for Romeo.

To come back to your question: I don’t know whether I’ve really closed the book on Buenos Aires. It’s my husband’s home. It’s more that the dream of living in faraway places is just gone now.

What was it like when you first came back to Switzerland, your husband moved here and you were both living in your home country?  

When you move abroad or arrive anywhere new, the language is hugely important, and I had the advantage in Argentina of speaking the language well. It was different the other way around.

It was a really, really tough start for my husband, because of the language, the culture, the situation. The plan was completely different.

When we came back to Switzerland, I found a job quickly. I worked four days a week. My husband had to find his way around the job market, make a name for himself. He spent a lot of time with Romeo, who was always getting infections. That meant we were always in the hospital and had to get used to new doctors and hospitals all the time. It was really very tough.

“I hoped for a long time that it would pass.”

Romeo was eight months old when he had his first seizure. You couldn’t have known then what that meant for your lives. When you look back on the carefree time before this turning point, what did the first seizure do to you personally? How have you changed because of it?

That’s a difficult question for me to answer. One thing it certainly did give me is a sense of perspective. It taught me what really mattered in life.

Looking back, I’m still so grateful that the doctor reacted so quickly back then. It took a relatively long time for them to confirm what was wrong with Romeo.

But we were lucky that Romeo never got the wrong medication. That was down to the doctor, who quickly had an inkling of what was wrong. I’m eternally grateful to her for that.

At first, we actually thought it was a reaction to a vaccine he’d been given just before.

But there was no link?

No, although we suspected it at first. Seizures often occur when the body has its first immune response.

The first time he had a seizure, did you hope it was a one-off?

Much later, after other seizures, I still hoped it would pass. When we were first faced with the suspected diagnosis, I told myself: “As long as a doctor hasn’t confirmed it, it could still be something else, something harmless.”

“It wasn’t good at all. I knew that straight away.”

When Romeo had his first seizure at eight months old, what exactly happened to him?

The first-ever seizure only lasted ten minutes. Those ten minutes seemed extremely long to us. It was five thirty in the morning and we were all half asleep. I saw that he couldn’t stop twitching. It wasn’t good at all. I knew that straight away.

Did you know that it wasn’t a febrile seizure?

He didn’t have a fever. We lived 600 meters away from the hospital, so we got there relatively quickly. The seizure stopped while we were still on our way there. He had to stay in for observation for two days. Everything was fine, so I didn’t worry about it much afterwards. Until he had status epilepticus (SE) 10 days later. Status epilepticus refers to an epileptic seizure lasting longer than 20 minutes.

Is it true that after SE, there’s a risk of lasting damage?

Yes. It’s life-threatening. There aren’t many studies on the frequency of seizures and development but it’s known that children who have had status epilepticus experience more of a cognitive impact. There are kids with Dravet syndrome who have never had a seizure lasting longer than 15 minutes and they are mostly better off.

How many seizures does Romeo have now? How often? 

Around four per month.

Can these be reduced with medication?

We’re trying that out. At the moment, for example, he hasn’t had one for several weeks, but he had 12 the month before that.

And in Buenos Aires?

One. Right at the very end, on the penultimate day of our vacation. We were with family and he was sleeping. He didn’t hurt himself. When he has a seizure during the day, there’s a big risk of him falling. When he’s asleep, they’re least uncomfortable. He has had so many seizures by now that it’s something of a routine for me, although I’m always terrified of a new one.

What happens to you in that moment?

A mechanism kicks in. I’m running on autopilot.

We were sitting on the terrace. Romeo was wearing the pulse oximeter. It monitors blood oxygen and the pulse, and its alarm is very loud. So the alarm went off and my husband and I just went for it.

First of all, we time it, to see how long the seizure lasts. We check that Romeo isn’t somehow lying on his stomach and not getting oxygen.

It wasn’t really that different from at home. There’s the trust and the knowledge, they know how to handle it in the hospital.

Of course, it’s much more difficult if we’re traveling, visiting friends, or in the mountains, in remote places.

“I got heart palpitations.”

It seems to me you operate as if you were a paramedic on call 24 hours a day. Except you never have a break. Being on a constant state of alert must do something to you. How do you cope?

I feel it physically. On the one hand, it’s the increased adrenaline, that might even be necessary. I got heart palpitations. Lots of mothers in similar situations experience the same thing. I can’t get rid of them.

When I was pregnant and breastfeeding with Luca, I didn’t have them, so I know what it feels like without them. In an EKG the doctors did, I sometimes had a palpitation on every second beat.

Does that scare you?

The palpitations? They don’t scare me. They annoy me. I know it’s the stress, always being on alert.

You and your husband know exactly what you need to do in an emergency, down to the last movement. You’re a well-oiled machine. Is there the thought in the back of your mind that you can’t let anything happen to you?

Of course, it’s always there. Mainly the fear of what happens when we’re gone. I hope we’ll hold out.

It’s tiring, isn’t it?

Yes, it’s tiring.

What would happen if something happened to one or both of you?

Such thoughts do sometimes cross my mind. We’ve documented a lot. We have a schedule for the caregiver, explaining everything Romeo gets from morning to evening, when he needs to be monitored for fever, what medication he needs to be given, and when. This is always in Romeo’s backpack. If something were to happen, the initial information would be there.

“You have to be aware that the ‘other child’ loses out on a lot.”

Did it take a lot of courage to decide to have another child?

I don’t feel like it took courage. We never wanted an only child. I also felt that it would do us good somehow, even though it’s a huge undertaking, purely in terms of organization.

And energy.

Yes, of course. We just recently noticed during our vacation that not everything is possible. On the one hand, we have our three-year-old, Luca, who has his own needs, and isn’t very sensible yet, in a huge city with lots of traffic where you really need to watch out. And on the other hand, we have Romeo, who simply doesn’t know the dangers. In Argentina, we had a babysitter a couple of days a week, because we knew we just wouldn’t manage otherwise.

As a mother, have you already thought that Luca is missing out or is at risk of missing out, because all the attention is naturally on Romeo?

That’s always going through my mind. Siblings of children with a serious illness are sometimes called “shadow children”. There are some parents for whom that’s absolutely the wrong term. I wouldn’t describe Luca as a “shadow child” either. That wouldn’t be right. But you do have to be very aware that the “other child” loses out on a lot.

“Right now, I get the feeling I’m neglecting myself.”

You’re a mother of two and a qualified food engineer, working in education at ETH Zurich. You’re also the Chair of the board of the association “Dravet Syndrom Schweiz”, which you also founded. And then you have your own busy life, which is heavily influenced by Romeo’s condition. I don’t know if this is too trivial a question, but how do you do it? Where do you get your energy?

I don’t know exactly. Before I had a family, friends often said to me: “You’ve got so much energy!” I don’t know if I was born with it. And I don’t know if I have enough energy. Right now, I get the feeling I’m neglecting myself. I make sure I can fit everything into 24 hours of the day one way or another. Whether I feel good is of secondary concern.

Getting away for a day or two – is that simply out of the question?

It’s possible, and I’m very grateful to my doctor for that. Five years ago, she suggested to me that I treat myself to a vacation, when she saw how I was feeling. I said to her: “That’s impossible!” And she said I should go for two weeks.

By yourself? No kids?

By myself. No kids. I said straight away: “I can’t do it.” Then, I finally went to my mother’s vacation home for 12 days. That did me an unbelievable amount of good. I had to learn to let go and trust that my husband could manage everything on his own, with a little help. Since then, it’s become something of an institution. The following year, I went on vacation with a friend.

And can you actually switch off?

When I’m far enough away, it works. I sleep a lot, and for a long time. Since Luca was born, I haven’t been sleeping as long.

You founded the association Dravet Syndrom Schweiz, partly to raise awareness of the condition in the first place. As this syndrome affects so few people, there is hardly any research into it. Do you feel like you can achieve something with your efforts?

Sometimes it’s depressing. You don’t see any direct results. If we could only get some more research funding to put into a project!

A year ago, you received the EPI prize from the Swiss Epilepsy Foundation, worth 10,000 francs, for your commitment to the cause. What did you spend the money on?

I donated half the prize money to the association Dravet Syndrom Schweiz for a research project. I invested the other half in a tandem bicycle. Romeo, who can’t cycle, sits in front, so he can help with the pedaling.

How does it work for children with Dravet syndrome: is the clinical course the same for everyone?

Dravet is what is known as a spectrum condition. The clinical course of the condition isn’t the same for every child. There are children who are diagnosed with a mild form of the syndrome and have hardly ever had status epilepticus. There are others with a severe form and multiple episodes of SE.

It’s impossible to say why one child’s intellectual development is worse than another’s. There are children who have very few seizures but still aren’t where you would expect them to be cognitively.

It’s known that the gene defect causes the severe seizures and also stops the brain from developing. The communication between the nerve cells doesn’t work 24 hours a day.

“The world isn’t some one-size-fits-all place, where everyone’s exactly the same.”

Romeo attends a special school, but as of late, he’s also been attending a mainstream school. How did this come about?

Mhm. It was a long road. It took a year to prepare, between the idea and its actually happening.

Was it your idea?  

Yes. The idea came to me by chance, because my friend’s son once told me, as an aside: “There’s a kid in the class with Down syndrome but he isn’t always there.”

Putting Romeo into mainstream education full-time isn’t an option. He needs his afternoon nap, he needs his downtime, and certain subjects are simply too tough for him.

Whether it was coincidence or whatever else, I said: “Aha, that sounds like partial integration, is that possible here in our area?” It kindled my fighting spirit.

Which area of Zurich do you live in?

Wipkingen. The school Nordstrasse had won prizes. We got in touch. At first, I wasn’t sure whether our idea was actually doable. They didn’t know which grade to put Romeo in and whether the teachers were even prepared.

Then it suddenly turned out that Romeo was going to have the same teacher who taught the class with the boy who had Down syndrome. Everyone loves him dearly. But it’s not just this teacher. His colleagues also deserve huge praise.

At the moment, there are three of them when Romeo is at school: his social education worker, the special education teacher and the class teacher.

Integrating Romeo with kids of the same age must have been a huge step.

Yes, but it goes both ways. I’m convinced that everyone benefits from the situation. The pupils can see the world isn’t some one-size-fits-all place, where everyone’s exactly the same. I also thought it was amazing how on the first parents’ evening, the teachers said: the kids are all different and we meet them where they are.

“It hurts that Romeo doesn’t have any real friends.”

Were there reactions from the other parents?  

Very few in the run-up, and the feedback I did get was very positive, that they were delighted. And when he began to be integrated, there was feedback from the teachers, too. It’s a huge success.

And how did Romeo react himself?

Romeo… Since he doesn’t actually talk very much, it’s hard to name a specific reaction.

Can he talk at all?

He does talk, individual words or short sentences, but you have to drag it out of him. He can’t talk about pain or anything like that. And he doesn’t answer questions like: “Do you like it?” He doesn’t answer questions that seem normal to us.

So he can’t express feelings?

It’s tough. I often receive photos. I can see what he’s doing, and I’ve developed a good sense of how he feels. Overall, I feel like he enjoys going to school. I drop him off, and then he’s mostly really quick to interact with the other kids, in his childlike way. Some of them know him, others don’t.

I often film little videos on my phone, like the school’s welcome ritual. It was amazing: the entire school got involved. All the pupils were in the school yard. The new students and teaching staff walked through an archway with wreaths of flowers and the whole school called their names.

When you suddenly hear them calling “Romeo”, the name of your child, who hasn’t been integrated with children his own age until now – isn’t that incredibly moving?

Yes. I was close to tears. And Romeo watches the little video of his first day at school so often. It’s an important step for him, to be integrated, even just from day to day.

Although we live in an area where there are lots of kids who have already known Romeo for eight years, contact with others still isn’t easy.

But Romeo needs to be around kids his age. We want him to integrate socially.

“I want Romeo to be able to stay mobile.”

Will he ever be able to move out and live away from home?

Not without support, no. When we go to the epilepsy clinic, we pass a building offering “assisted living”. Sometimes I think about it. I wonder: might Romeo live there when he’s 20? I don’t know.

What would you like for him?

He’s such a ray of sunshine now. I want him to stay that way. And I want him to be happy.

What makes him happy?

Music makes him happy. And he’s obsessed with trains. So we go to the railway station a lot. That makes him happy. When we came back from vacation, someone was giving a concert in the railway station. They even played a song he knows. That was an incredibly intense moment for him. And for me, too.

In the future, I want him to be able to stay mobile. That’s not a given. There are many kids with Dravet syndrome who have orthopedic problems. Some of them are in wheelchairs.

And what would you like for yourself?

To have enough energy. For myself, I wish that I could have a bit more time for myself. That’s something I can work on. They’ve improved the law on social security for people with disabilities, and now we have more hours, social assistance, and that’s wonderful…

But?

But I don’t want my child being looked after by other people the whole time. I want to spend time with my child. I wonder: how many hours of professional care is OK?

 “It hurts, and it always will.”

Your life is very complex and you’re understandably very drained. But when you look at the path you’ve traveled as a family, is there anything positive that’s come about as a result? Has the illness created any kind of opportunity for something else?

You can’t ask yourself: “What if…?” That just hurts. It’s helped me grow. It’s given me the chance to see and enjoy the simple things, the real priorities in life. I can say that now, after almost 10 years. I couldn’t have done that five years ago.

Have you been able to accept the situation?

Well, that’s not so easy to answer. It takes a few years. There’s a lot of sorrow before there’s acceptance. Now, I’m sort of “accustomed” to our life. At some point, you become… “adapted” to it.

Have I accepted it? Yes, but it hurts, and it always will. For example, whenever I notice that Romeo doesn’t have any real friends, not even in special school, that hurts.

“Romeo is part of society.”

As a mother, you want to protect your child from pain and difficult experiences, even though it’s impossible.

Yes, I hope at some point there will be a like-minded child or young adult who works the same way as Romeo does. That he’ll find a kindred spirit.

Now I’ve grown to accept that this is just how it is. Romeo is different, and special.

Today, it’s a lot easier for me to tell someone: “My child has a disability.” Before, people might not have noticed immediately, but now, they can see it in Romeo, unless they’re walking around being totally oblivious.

Which has also made it easier for us: everyone at the Zurich children’s hospital knows us now, so we don’t have to give endless explanations any more.

Integration in the local area is certainly a real help. Romeo is part of the community: Recently, we had to call the ambulance, and as we were driving away, we got a text from our neighbor: “Can we help?”. It’s those little moments that do me an incredible amount of good.

Does it help you accept the situation when you feel that Romeo is accepted by the people around you?

Yes, massively.

Although there’s a seven-year age gap between them, in terms of development, your sons are at a similar stage. How do you think this situation will impact them as brothers?

When Luca overtakes Romeo, that’s probably going to be quite difficult for us. He already talks a lot more than his big brother. My husband and I are always surprised by everything our three-year-old can do.

But what’s much more important is that the two boys spend a lot of time together. Even just now, in the holidays, there was a moment that really moved me: I don’t remember who it was, whether it was Romeo who reached for Luca’s hand, or the other way around.

For me, it was simply wonderful to see and I thought: Someday, when we’re gone, Luca can be Romeo’s guide.

www.dravet.ch

Copy: Anna Maier

Images: Claudia Herzog