Does the way an eye is removed affect how parents and children cope with it?
“Yes, that makes a big difference. Sometimes an eye removal is scheduled. For example, if an eye is blind and painful due to an illness or a congenital abnormality. In those cases, the parents and child often know for some time that the eye needs to be removed. They can prepare for it, even if only briefly.
But sometimes everything happens very quickly. With retinoblastoma, parents are sometimes told within a week that their child has cancer and that the eye must be removed immediately. At first, you might think it’s just an infection, and a few days later, everything has changed. That’s very intense and difficult to process. What I often see is that parents of children who are later cancer-free struggle even more. Medically, their child is healthy, but emotionally, a lot has happened. That’s when the healing process really begins. With accidents, such as those involving fireworks, there’s absolutely no warning. That increases the risk of trauma.”
Can parents’ stress affect how a child copes with getting an ocular prosthesis?
“Yes, that’s certainly possible. Stress and emotions often affect the whole family. Still, it’s not always a one-to-one relationship. Parents may react calmly, yet a child can still experience trauma. And conversely, a child may be doing well, while the parents are having a very hard time.” We also see that the medical process isn’t the whole story. Sometimes it’s very difficult, but dealing with the ocular prosthesis is actually easy. Sometimes the medical side is straightforward, but there’s still a lot of anxiety about the prosthesis. It’s impossible to predict. Every child and every family is different. “One thing is clear: a high-stress, tense environment doesn’t help anyone—not the child, not the parents, and not the care team either. That’s why it’s important to take a moment together to reflect on what’s happening and what everyone needs.”
What makes it difficult to cope with an ocular prosthesis at a young age?
“What we often see is that young children really want to be in control. This is especially true for children between the ages of two and four. That’s actually the most challenging age to start using an ocular prosthesis. They’re still too young to really do it on their own, but they do want to decide for themselves what happens. Or, conversely, they might refuse to cooperate at all. That can quickly lead to conflicts. And if you get caught up in that, you run the risk of causing trauma. We really want to prevent that, because then you’re already far off track. We know that experiences like that can have a major impact.” “That’s why it’s so important for the entire process to go as smoothly and easily as possible. If putting the prosthesis on and taking it off is easy and hassle-free, that’s a huge benefit. It helps children cope better with it and adjust to it step by step.”
Why is clear language so important for young children?
“Language and communication are incredibly important, especially in the hospital. This is especially true for young children under the age of five, who still have a lot of magical thinking. I always tell parents, ‘Choose your words very carefully.’ If an eye has to be removed and you say, ‘You’re getting a new eye,’ you need to immediately add that the new eye can’t see. I prefer to use words like ‘prosthetic eye’ or ‘artificial eye.’ Otherwise, children might think they’ll be able to see again, and that can cause panic and sadness when the prosthesis is fitted.” I’ve seen it happen several times that children here got completely stuck because of this. It’s truly heartbreaking.
That’s why it’s so important to always involve children in what’s happening—even if they can’t make decisions on their own. Even with babies, you explain: “Your eye is sick,” or “Your eye isn’t working right,” and that’s why something needs to be done. We do the same as a team. You shouldn’t just take a child by surprise. Children form memories very early on and can be traumatized even at a young age. A good, honest explanation tailored to the child’s level really makes a difference.”
What is the best approach with young children?
“It’s very important not to overwhelm a child, but to practice together calmly. You have to pay close attention to what a child can handle. Don’t push past their limits, but keep practicing and do so consistently. When a child is able to do something on their own depends on their development. If a child can dress themselves or brush their teeth, you can gently offer them something to do with the denture. Start very small: first touching it, then holding the suction cup, wiggling it around, and only later actually practicing with the eye. This is a step-by-step process. Practice should be done without coercion, but with a little clear guidance. For example, you can say, “Let’s give it a try,” and then set a timer—just like when brushing teeth.
When a child resists, it’s important to break everything down into very small steps. Every small step they manage is a success, and you should reward them for it. It can be something small, like dancing together for a moment. This is often nerve-wracking for parents, too. Guidance from a professional, such as an ocularist or psychologist, can help. Every child is different. Sometimes there’s trauma underlying the resistance. If you address that, the practice often goes better.”
What can make eye contact difficult for children with an ocular prosthesis?
I always try to look at the good eye myself. That keeps the connection calmer and clearer. This is especially important with young children. If you keep switching from one eye to the other, it can make a child feel as if the connection is constantly breaking. And when you want to explain something or reassure someone, you want to stay connected.
This is also an issue for older children and teenagers. Many teenagers say, “People are always staring at my artificial eye.” Then I explain that this actually makes perfect sense. People automatically look at both eyes. Many parents and young people don’t realize that. When you explain it, it often brings more peace of mind and understanding. These are small things, but they do make a difference.”
What does starting a new school mean for a child with an eye prosthesis?
“A transition, such as from elementary school to high school, is especially nerve-wracking. New people, new groups. Who do you tell, and who don’t you tell? We’re often in favor of openness, but it’s also a personal matter. You don’t tell everyone that you have a crown in your mouth, either. It shouldn’t be something to be ashamed of, but it doesn’t always have to be shared either.”
Uncertainty is normal among adolescents: Do I fit in? Do others like me? With an ocular prosthesis or an eye condition, that feeling can be even stronger. This also applies to parents. Out of fear, they may become overly protective. But a child must be able to develop freely. If everything becomes intimidating, fear can grow. That’s something I always point out to parents.”
How do children with an ocular prosthesis fare as they get older?
“Some of the children continue to experience symptoms on a daily basis even later in life. About one-third experience physical problems, such as difficulty with depth perception or coping with the prosthesis. This can persist into adolescence and adulthood. In addition, scientific research shows that about a quarter experience social or emotional problems. This is particularly evident among adolescents, for whom appearance becomes more important. They become especially self-conscious about their eye or prosthesis and often think that others notice it immediately. This can lead to insecurity and lower self-confidence. For a smaller group—about ten to fifteen percent—social or relationship problems persist. That’s why it’s important to continue paying attention, even later in life, to how people feel and cope with their ocular prosthesis.”
Why is it important for ophthalmologists to also pay attention to the mental and social aspects, in both children and adults?
“My message to ophthalmologists is: ‘Stay alert to this and ask about it during patient consultations.’ There is a relatively large group of children and adults who experience mental or social difficulties due to an eye condition or an ocular prosthesis.” Prevention is very important in this regard. If you pay attention to how someone is feeling right from the start, you can prevent many problems later on. Sometimes just a few conversations are enough—simply explaining things, offering support, and providing practical guidance. This helps children and adults feel seen and heard, and it prevents psychosocial problems. And if you notice that problems persist, refer them promptly for psychological treatment so they don’t fall behind in school or at work.
Are there any positive effects of these traumatic experiences?
“Yes, definitely. There are definitely such cases. We call that post-traumatic growth. Or, as I sometimes call it, ‘growth after hardship.’ What you often see is that people who have gone through something very traumatic also develop strengths. They discover that they can handle more than they thought.” Children and parents learn: we’ve survived this; we can handle difficult situations. That gives them strength and self-confidence. It creates a sense that, no matter how bad it was, everything turned out all right. You carry that confidence with you for the rest of your life. And that’s also very valuable.”
Supportive Language Use
On this page, Mieke offers tips on what kind of language can be helpful and provides links to useful websites.
