We are the parents of a little boy who was born with Anophthalmos –a very rare condition.
Anophthalmos affects only 1 to 10 in 100,000 children. Sadly, our son was also born with this condition.
You might find our story similar to many other families of ill children. However, we know that now that it also concerns us, it causes sheer terror, pain and anger.
Jacob is a child we planned and looked forward to having. Before I was pregnant, I had done a number of tests to make sure that everything was OK. At Christmas we learned that I was going to have a baby. It had just been the second week of my pregnancy. I remember crying, but these were tears of joy. From that time on, we had been thinking about our second child. Everything was all right. The pregnancy went on without any complications. The only cause for concern were problems with hypertension. So I often had a ultrasound scan. The doctors, however, reassured me that the child was developing normally; tests results were also very promising. Today, we are going over the records from the hospital over and over again. The ultrasound was done by seven doctors. On one of the pictures, a doctor marked the nose, the mouth and the eyes with a pen.
Then the childbirth day came. We went to the hospital. “What if the child will be sick?”, I was wondering on my way to the hospital. I believe many women have these thoughts but in our heart of hearts we do hope that everything will turn out alright in the end. Mariusz kept telling me that we are both healthy, our little daughter had been born a healthy baby, why should it be different this time around? Smiling, he reassured me, ”Wioletta, in two days we’ll be happy on our way home with the baby.”
Jacob was born in the morning. They laid him down on my belly. I was so happy when he started crying. After a little while I heard them say, ”The baby won’t open his eyes”. The first thing that came to my mind was that his eyelids must have grown together and that they were surely going to handle this. But the midwife’s face told something else. They took Jacob to a special care ward. The doctors diagnosed our child as having no developed optical nerves or eyeballs and that he would never be able to see.
This came down as a shock. We didn’t even know that a child can be born with such a condition. What we went through in the hospital was a nightmare. I and Mariusz kept looking at each other. We couldn’t help crying. I begged him to tell me this wasn’t real. The doctors explained it wasn’t our fault, it wasn’t the fault of genes, toxins or medicines, either; just one tiny cell that failed to divide. Purely natural. This could happen to anyone, they kept saying.
I couldn’t breathe, and I couldn’t believe all of this. I thought that what they were saying wasn’t true.
After a week we were back home. We cried all the way through. Nobody told us what to do next. I felt terrible, I was depressed and walked around the home with my eyes closed. I screamed, “God, why did you do this to me? All this time I’d begged you to make Jacob a healthy child.” Mariusz is trying to be brave. He’s crying when I can’t see. What can we do for our child to have eyes, to be able to see? We would give everything if our child had been born healthy. We are overwhelmed by our powerlessness.
We started looking around. We have found a medical clinic in Germany, where Jacob can be operated on. He needs to undergo a number of implantation operations. Namely seven. The first one must be carried out when the baby is 3 months old. This is very important for normal development of his skull and eye sockets, keeping normal pressure inside the eye socket and a better social psychological development.
Mariusz told me that he would do everything for Jacob to have a normal life. This was his promise. From the beginning he’s been trying to find the best specialist who will carry out the operation. I can see how hard he’s trying.
I can’t comprehend it all, and I can’t come to terms with it. But what am I supposed to do? I really don’t know why we’re writing this… Maybe to help other parents whose child was born with anophthalmos. If I hadn’t talked to the mother of a child with the same condition, then, personally, I wouldn’t cope. So thank you, Kasia!
Mariusz believes that Jacob will get his own eyes in a couple of years and will be a smart boy. Recently he told me, “Wiola, mark my words: one day Jacob will speak somewhere in a room and there will be people listening to him. For he will be a wise man. And there’ll be us, seated in the last row, crying out of joy.”
And this is all our hope, faith and the reason why we are doing this