Interview with Stefan Buitenhuis

Who are you and what is your relationship to OI?
I am Stefan Buitenhuis. I graduated as a journalist and worked for years in television and radio as a journalist and media maker. For just over a year now, I have been working as a communications advisor for the Dutch government. In addition, I am a comedian and presenter.

Where do you live today, and how was your upbringing?
I live in the Netherlands in the town of Utrecht now. I had a very happy childhood in a small village called Lisserbroek, together with parents and 3 brothers. My parents always did their best to raise me as normally as possible. I went to mainstream schools and basically did all the things my brothers (who do not have OI or any disability) did. Though often in my own way, of course.

In an article from RTL you mentioned challenges in finding a partner. Would you be willing to share some of those experiences? How did you meet your current partner? Do you think it is harder for men with OI to meet women compared to women with OI finding a man?
I dated quite a bit and had some short relationships, but for some women it was difficult to enter a relationship with someone in a wheelchair. Eventually, I met Jonneke through Tinder. I never expected to find the love of my life in Tinder, but it happened. We clicked immediately.

I don’t know whether it is harder for men with OI than for women with OI to find a partner. I think this challenge exists for everyone, and every person with OI has their own struggles in life. In the end, you need to find a partner who sees beyond that. Someone who sees you for who you are. As a person with OI, you must recognize that these challenges exist, but also that you are so much more than “the person with OI.” You must give yourself value. If you don’t see your own worth, how can anyone else see it? Believe that you deserve to be here and that you can be a great partner, even with OI. For me, it took some time to develop that mindset.

When and how did you and your partner decide to have a child together?
The subject of children came up as early as our second or third date. My girlfriend, Jonneke, already had two children, and she told me she had experienced her pregnancies as very positive. I told her that I had given up on my dream of having children, but that if I did have the chance, I would want my child not to have OI. That possibility exists through IVF with embryo selection. It’s not that I think I shouldn’t exist or that OI is bad. But I had a lot of pain as a child, and I would find it very hard to see my own child suffer like that.

That was not the moment we decided to go for it. But we both (without telling each other at first) started looking for information about IVF and embryo selection. We realized that if we wanted to do this, we didn’t have much time left – Jonneke was almost 40.

Our relationship quickly became serious, and we moved in together. We then decided to get in touch with a hospital to get on a waiting list. We weren’t completely ready yet. But we knew that waiting too long wasn’t an option. What we didn’t realize was that, under the Dutch healthcare system, we were already considered too old for this treatment. By the time the procedure could have taken place, Jonneke would have been 41, and the chance of success was considered too low.

Between the age of 18 and now, you changed your mind about having a child with OI. Why?
When I was younger, I mainly reasoned from my own perspective: I have OI, but also a very good life. So I thought that if I had a child with OI, he or she could also have a good life. I believed I could help them accept it.

When I got older, I found a diary my mother had kept about my first years of life. It described the pain I experienced as a child, but also the powerlessness my parents felt when I was crying in pain time after time. That made me realize that having a child with OI could be very hard. Beautiful too, but also heavy, emotional, and sometimes sad. I also talked with my parents about what it was like for them whenever I broke something or was in pain. That really made me think.

Your request for embryo selection was first rejected in the Netherlands – how did this make you feel?
It was incredibly painful. I finally had a partner with whom I might have a child, and that made my desire stronger than ever. Then the hospital told us – without even doing any medical checks on us – that we would not be placed on the waiting list, purely based on age. That was devastating. It felt as if my chance to have a child was taken away, before I even had a real chance.

We did consider whether we should try naturally. But I decided that wasn’t an option for us, partly because Jonneke already had two children who needed her attention. Realizing what that decision meant, brought me to tears. It felt so unfair.

Then another opportunity opened up in Belgium – what happened there?
After the first sadness had passed, we contacted a friend of mine who works in the fertility department at a hospital in Ghent. I knew she was very knowledgeable about what was possible. In Belgium, they look differently at age limits: they first check the actual physical health of the prospective parents. Tests showed that both Jonneke and I were healthy, and that there was still a chance if we did the treatment there.

Of course, we seized that chance. The process was long and intense and physically and mentally full of uncertainty. The chance of success was considered small, but there was a chance. So we went for it.

Jonneke received hormones to stimulate egg growth. In the end, there were four mature eggs. They were combined with my sperm, and all four fertilized. That was already a good result, but then they had to keep growing into embryos. Two of them stopped developing. The other two were frozen and tested for OI. One embryo had OI, the other did not, so that one could be used. A transfer is still far from certain, but in our case, it worked. And that resulted in our daughter Lyva. We are incredibly lucky.

You made a podcast about your journey – why did you choose to do so?
I felt there wasn’t much information about IVF with embryo selection. There is some information about the medical and ethical aspects, but little about what it is like for the prospective parents. We wanted to break the taboo and make the subject more open for discussion.

As a result, we received many emails and messages from people in similar situations. People who went through the same thing or were deciding whether to do IVF, try naturally, or not have children at all.

Did you have any worries about becoming a father with a disability – for example, about how much you would be able to help? What solutions have you found for these challenges?
I wasn’t worried, but I found it exciting. I was already caring for Jonneke’s other children, so I knew what I could do. But of course, a baby is something very different. We thought carefully about many practical things.

A few examples:

Changing diapers
We now have two changing tables, one at Jonneke’s height and one at mine. One of them folds against the wall to save space.

The crib
Cribs are usually very deep, which is difficult for me. At first, the baby slept in a co-sleeper, but later in a crib. My father put the crib on table legs so I can roll under it, and he added hinges to the side so I can open it.

Stroller
I use a manual wheelchair, so a stroller is tricky. I use a BabyBjörn carrier instead. When she’s bigger, I have a Dooky Travel Chair that I can attach to myself so she can sit on my lap.
So far, this has worked really well. There’s nothing I absolutely can’t do, but sometimes it’s easier if Jonneke does it. But in principle I can do everything.

Do you think having OI can also make you a better father in some ways?
I don’t know. But maybe it gives me extra patience or perspective. That can be valuable as a father.

Do you understand that some adults with OI might feel it’s problematic to select only embryos without OI? Did you have any ethical concerns yourself?
Yes, I completely understand that. And I also understand people who make a different choices. But for us, this was the only way.

What do you do when you are not taking care of your baby?
I am a comedian, presenter, and communications advisor. I also enjoy football (Ajax), gaming, watching movies and series, and living the good life with good food and drinks.

How is your relationship with the OI community, and how have you benefited from it? And in what way can OI organizations better support adults with OI who want to do the same as you did?
I have been a member of the Dutch OI association (VOI) since I was only a few months old. I always had a good relationship with the association and made many friends there. I especially loved the international youth weekends. I would love to relive that.

Currently I don’t go to VOI events as often as I would like to, because life is so busy. But I think our association does a fantastic work and plays an important role as a place where people with OI can meet and share experiences.