Georgette: “I remember clearly that Marijn texted me a few weeks ago: ‘It actually has a name! Did you know there’s a separate patient organization for people with the same condition as me? It’s called microphthalmia.’ Goosebumps! After 50 years, finally knowing that your daughter isn’t the only one. Fifty years ago, nothing was known about it at all.”
“In 1971, Marijn was born as our second daughter—a healthy, lively, and cheerful baby. We were overjoyed. Our little one had her right eye closed on the first day. Peter and I hadn’t noticed anything. The next day, she still had that eye closed. I said to the midwife, ‘That’s strange—she’s keeping one eye closed.’ “Don’t worry, lots of babies do that when they’re first born. She’ll be fine!” was the reply. On the second day, Marijn’s other eye opened, and I was so startled because that eye was much smaller. The midwife noticed this too. She was very upset and apologized for not having seen it sooner.”
What now?
Somewhat emotional, Georgette continues: “Peter and I were completely devastated. What was going to happen to our little girl? What would her future look like? We cried a lot. Peter was in the military, and we’d had a weekend wedding. I sought help everywhere and, even though Marijn wasn’t even two months old yet, made an appointment with the ophthalmologist at the Elisabeth Hospital in Alkmaar. Her eye was examined, but the doctor couldn’t make a diagnosis. ‘This is a rare condition, and there’s nothing that can be done about it,’ the doctor said. As a 23-year-old mother, I left the hospital in the rain, crying as I pushed the stroller. I even thought to myself, “I’m so glad it’s raining—that way, no one will see me crying.” Three months later, we moved from Alkmaar to Ede. While we were living in Ede, there were no hospital visits. When Marijn was just four years old, we moved to Nunspeet. From that moment on, my search for a diagnosis and help continued. I thought, “I’m not going to let it end here! She might run into problems later, or she might get bullied.” Peter and I wanted to give her a good future.”
God decides…
“During that time, we went to see the family doctor several times. The doctor said—and I’ll never forget this: ‘There’s nothing that can be done about this, ma’am; just accept it. It’s a congenital condition, and it’s God’s will.’ I found this so upsetting that I managed to get him to write a referral to the VU in Amsterdam. I wanted her condition to be examined at the academic level to determine what was wrong with her eye. We wanted to do everything within our power for Marijn! It was a huge relief to be able to discuss the situation with highly trained specialists. They were completely open to it and were all so friendly and understanding. It was just such a warm and welcoming experience!”
Marijn’s eye was examined thoroughly. Unfortunately, there was no other news. “It’s an abnormality, but we can make sure she gets fitted for a prosthetic eye,” said the specialists at the VU. The family doctor had never mentioned this option to us. But at that point, her eye abnormality still hadn’t been diagnosed.”
First Eye Prosthesis
With a big smile, Georgette says, “That’s how Marijn first came into contact with a prosthetist at the age of eight: the Müller company, at a hotel on Vredenburg in Utrecht. The glass prosthesis was fitted right away, and when she walked through the Hoog Catharijne shopping center, holding her parents’ hands, she kept looking in the store windows and saw herself in a whole new light. She looked so beautiful! It was a truly moving moment for us.”
Marijn continues: “We didn’t know back then that it had a name or that there were other people with a small eye. It wasn’t until I visited the ocularist that I saw a girl with two smaller eyes for the first time. I can still picture it now. I wasn’t the only one. No one around me had the same condition as I did. I still remember that visit to the ocularist very well. There were all kinds of glass eyes in a big box. They looked to see which color suited me, and then the prosthesis was custom-made. They pressed a sort of shoehorn into my hands. After that, they instructed me on how to remove my prosthetic eye. It was actually more like “popping it out.” By the way, I have a whole collection of all my prosthetic eyes.”
Bullied
“At preschool in Ede, the other kids ignored me because I looked different. I didn’t have any friends there. During recess, I always played by myself. Even the teacher was very unkind. Fortunately, this changed when we moved to Nunspeet. In my first school photo, you can see me with two braids and my prosthetic eye in. At first, my prosthetic eye drew a lot of attention at this school. My sister Fransje was very protective of me; for example, if I got sand in my eye with the prosthesis, she’d come right over to check if I was okay. At school itself, I didn’t need any special accommodations.
I do notice that it bothers me when people walk on the wrong side. I’d like them to walk on my left side, because then at least I can see them. I hate square tables because there are only two places where I can sit: on the far right. I never want to sit in the middle, nor at round tables, because then I’m always missing a tablemate on one side. Getting my driver’s license wasn’t a problem; I only had to take an eye exam at the doctor’s office once. Never again after that. I don’t like driving in the dark or in the rain. But I’m very careful with my good eye!”
Would it have made a difference if you had been in touch with other parents?
Georgette: “Oh, absolutely! It makes you feel less alone. I really missed having other people’s support. We didn’t have a phone at home back then, so I always had to walk to a pay phone to get in touch with others. As soon as we could, we bought a phone. Later—in high school—Marijn would sometimes come home from school looking sad. She’d been bullied again, and sometimes people had said such hurtful things to her.”
Marijn: “Even the history teacher got in on it. I remember it well. I wasn’t really paying attention, and he said, ‘I don’t know what’s going on behind those eyes of yours!’ I thought that was awful; it made me feel really insecure. Later, at the MEAO, things went better, and I did well there. I started doing administrative work and got a job at an administrative office in Dronten. From there, I moved into payroll and specialized in that field. I now work for the municipality of Dronten, and it doesn’t bother me at all anymore. My coworkers are considerate of me and regularly ask, “Am I on the right side? Can you see me?” And I sometimes joke, “This is my blind spot.”
It actually has a name!
Marijn continues enthusiastically: “Last summer, I developed an eye infection. My husband searched online and found the OOG in OOG Association. ‘Wow,’ he said, ‘There’s even a patient association for people who see with just one eye!’ I immediately joined on Facebook and started scrolling through the posts. And that’s when I discovered that my condition has a name: microphthalmia. I signed up as a member right away.”
Because of my eye infection, I went to the hospital in Harderwijk for a checkup. I had taken out my prosthetic eye, and my eyelid kept closing. I noticed that people here do tend to look at it. They’re naturally curious about what’s going on. I was treated by a young female ophthalmologist. She also found this very interesting and had never seen anything like it before. Fortunately, the inflammation cleared up quickly. In the evening—once I’m sure no one is coming to visit—I take out my prosthetic eye right away. I feel more comfortable that way. I still find it difficult when people (other than my family) see me without the prosthesis. I don’t wear an eye patch, but I do wear an eye bandage. I feel like an eye patch stands out more.
My parents didn’t raise me to be overly protective. I was about 17 when I had to take the train all by myself to see the ocularist in Amersfoort for the first time. At first, I thought, “Oh man, do I really have to go all by myself?!?!’ But I’m really glad they gave me that push.”
Strong Woman
Georgette: “Marijn has been able to hold her own ever since she hit puberty. We didn’t raise her to be overly protected. And by embracing the fact that she has a slight squint and now radiates the attitude ‘I am who I am’ so strongly, she has become a truly independent and strong woman—but above all, a beautiful person on the inside. We’re very proud of that.”
At the table, Marijn confesses for the first time: “I’ll admit that I did take advantage of the situation a little at MEAO. Whenever we had a ball sport, I’d rather not participate. The teachers insisted that I be present in class, but I’d always make up an excuse. ‘I really can’t—it’s too dangerous for me to participate. I can’t judge depth… and my prosthetic eye might break.” Great, that gave me another hour off! Later, I received a sports recommendation card. It said I could play sports with safety goggles, but I never got around to it because that extra hour off was just too nice!”.
“I’m so glad the OOG in OOG Association exists! Especially for young children—it’s wonderful that their parents can now receive such excellent support from specialists right from the very beginning. For me personally, I really appreciate being able to connect with people who are going through the same thing as I am. I’m really looking forward to the National Meet-and-Greet Day!”
