Bibi is 3 months old when they go to the well-baby clinic one Friday for a routine checkup. By now, Charly and Linda are experienced parents, since they already have an older daughter, Nynke, who is a year and a half old at the time. Bibi has an eye exam that day. During the fundus reflex test, the light makes one eye turn red as it should, but the other eye remains gray. The well-baby clinic suspects a retinal detachment. Bibi was able to be seen that very same day at Amphia Hospital in Breda. Linda remembers it well: “The waiting room was full when we arrived, but they let us go ahead of everyone else. That’s when you start to sense that it’s being taken very seriously after all.” The ophthalmologist was concerned about what he saw. He wanted us to go to the Eye Hospital in Rotterdam. There, we were the first appointment right after the weekend. We were still under the assumption that it was a detached retina. Dr. Tjeerd Faber, however, diagnosed it as retinoblastoma, a rare form of retinal cancer. We were allowed to watch the screen. The tumor had already filled the entire eye and was nearly fully developed. A day later, we went to the VU University Medical Center in Amsterdam for various tests and an MRI under anesthesia. The doctors wanted to use this to determine the appropriate treatment. The tumor was so large and so well encapsulated that other treatments, such as radiation, were no longer effective. Removing the eye was the only option. The surgery took place a week later.”
Was this us?
At the time, Linda herself was working for Koninklijke Visio (Ed.: in special education for blind and visually impaired people with multiple disabilities). She had heard from a parent there that they had brought a camera along starting with the very first doctor’s visit to document the process. Linda: “Photos can be very helpful in the healing process. I remembered that. So when we had to go to the hospital for the first time, I immediately grabbed my camera. Back then, cell phones didn’t take good pictures yet. We eventually turned them into a photo album. At a time like that, you’re in such survival mode that you simply forget the entire timeline. When I reread the updates we sent to friends and family to keep them informed about Bibi’s progress, they read like a magazine. Was that really us?”
Exception
Genetic testing was started immediately. Surely their oldest daughter, Nynke, didn’t have the gene too? From the very beginning, Nynke was also closely monitored by the hospital. It took 6 to 8 months before the results of the genetic testing were known. Nerve-wracking months. But it turned out to be a non-hereditary form—highly unusual for retinoblastoma. Charly explains: “It was just plain bad luck—a minor defect in the eye’s development. Bibi’s form was so rare that an article was written about it in a scientific journal.” After the surgery, there was a period of frequent visits to the VU Medical Center. First every month, then every two months. “We chose not to stay at a Ronald McDonald House,” says Charly. We were able to stay with a friend in Amsterdam. We couldn’t handle the heartbreaking stories of other parents at that time, and of course, the commute between Breda and Amsterdam isn’t exactly a walk in the park. Our oldest daughter, Nynke, also came along to all the hospital visits. We didn’t want her to feel left out.” “Bibi really helped us get through this difficult time,” adds Linda. “She was such a cheerful, curious baby.”
A Special Eye
Bibi can’t remember much from those early days. That’s why she’s glad her parents put together the photo album. In the album, she saw that she first had a translucent shell where her eye used to be, and after 6–7 weeks with Frédérique Bak, she received her first real prosthesis. After that, she received a new one every year. Now she gets one every other year. And two years ago, she had a very special one made. Bibi says with a laugh, “I’d seen a video on TikTok of someone with a decorated eye. I thought that looked pretty cool, too. So I asked Frédérique if she could make something fun. It turned out to be a rainbow eye. At school, they thought it was pretty cool. But some of my classmates had to get used to it.” Bibi also “wears” her prosthetic eye regularly during Carnival or Halloween. “During Carnival, I wore one of those pirate eye patches, and for Halloween, I took out my eye prosthesis and used face paint to make it look like there was blood all around it,” she says with a laugh. Bibi seems very confident. Her parents confirm this. “We always communicate very openly with each other. We think that’s very important. Bibi knows she can always come to us if she runs into any problems. When she was nine, on the hospital’s advice, she also started seeing a psychologist. We thought that was a good idea, too, because as parents, you might overlook certain things. But the psychologist confirmed what we were already experiencing. Bibi is comfortable in her own skin and is very adaptable.”
Mental health issues
Did the parents themselves receive any psychological counseling regarding their daughter’s illness? “Definitely,” Charly agrees. “We went to therapy together. At first, you tend to fall into a routine. Linda focused mainly on caring for the children, and I went into ‘rational mode.’ For example, I made sure everyone was in the car on time, took care of administrative matters, and we put together the photo album together. Afterward, you have to process such a traumatic event—not just for yourself, but also with the sick child, the other child, and your partner. You have to learn to express what you need to cope with this. That’s different for everyone. Feelings of helplessness, coming to terms with loss, all the negative moments. It’s no small thing. I noticed I was getting irritable, angry. I also stopped exercising. Now I know that I need to take good care of myself, too. I really need exercise to feel mentally well.” Has Bibi ever gotten any unpleasant questions or comments from others about her eye prosthesis? “Well, fortunately not,” says the 12-year-old. “I can only remember one incident in kindergarten. There was a little boy who would always wait for me and then ask if I’d take my eye out. He seemed obsessed with it. My parents talked to his parents about it. Then it stopped.”
Helping Others
Bibi will soon use her experience living with an eye prosthesis to help another girl. Linda explains: “Recently, there was a post in the private Facebook group of the OOG in OOG Association about a 13-year-old girl who wanted to talk to someone her own age about her fear of putting on and taking off her prosthesis. I showed that post to Bibi. And now she’ll be video chatting with that girl soon and maybe meeting her in person sometime after that.” Bibi concludes: “I really enjoy being able to help other young people with my experience.”
Tips from Bibi, Linda, and Charly
- Take photos during hospital visits right from the start. It may help you process the experience later on.
- End a hospital visit on a positive note. For example, go eat at McDonald’s. That way, the day will still have a positive outcome.
- If you have other children, bring them along on hospital visits so they don’t feel left out. But as they get older, check in with them regularly to see if they still enjoy coming along.
- A week before your little one needs to be put under anesthesia again, practice using the anesthesia mask at home. Count down from 10 each time or sing a song. It will help your child feel less anxious when the time comes to actually go under anesthesia. Ask at the hospital if you can take a mask home with you.
- With the same cap, your child can also process his or her experiences while playing doctor with stuffed animals.
- Parents putting in and taking out the ocular prosthesis: Try to do this every day so the child gets used to it. Once your child can put in and/or take out the ocular prosthesis on their own, they’ll be comfortable with it.
- Explain to teachers that it’s okay if the prosthesis falls out once in a while. We had put together a package with an informational video and materials for the teachers. We used it up through about 7th grade, always in consultation with Bibi.
- Talk to each other a lot within the family. Make sure everything is open for discussion.
- Take good care of yourself so you can stay mentally strong.
- Be sure to prepare well for your first visit to Amsterdam UMC. Take a look around on your own first. Where can you park? What’s the walking route? That’ll save you a lot of stress on your first day when you go with the whole family.
- First, let the others get out at the main entrance of Amsterdam UMC, and only then park your car.
- Bring some toys for the children to keep them entertained. Hospital visits can sometimes take a long time.
- Let the people around you know that you don’t have the time or space for others right now. We’ve retreated into our own family bubble. That can be difficult for (in-laws) parents at times. But if you communicate openly about it, they usually understand.
