The beginning

Jana’s condition was diagnosed in the 20th week of pregnancy. According to the doctors, her prognosis wasn’t very promising. They warned us about potential intellectual, emotional, and motor deficiencies, but because of her progressive hydrocephalus, they prepared us for the possibility that she might lack basic abilities (such as breathing on her own, eating, smiling…). God, however, performed a miracle: not only did Jana survive, but she is developing wonderfully.

Even before she was born, Jana underwent many tests. After she was born, more tests and surgery awaited her. When she was 3 days old, she underwent a shunt implantation. (This is a device that drains fluid accumulating in the brain to the stomach.) She spent 10 days in the PICU, followed by 5 weeks in the Neonatal Unit.

She was such a sweet baby; she handled the tests like a champ—a real little fighter!  She didn’t make a sound until later; we were waiting for her to cry. And during our last week in the hospital, she learned to drink from a bottle. That way, we didn’t have to tube-feed her at home—thank God. It turned out she was prone to epilepsy, so we started the ketogenic diet while she was still in the hospital. As long as we stuck to the diet, she didn’t have any seizures.

Starting the Therapies

After six weeks, we were able to come home from the hospital, but the tests and follow-up appointments continued. And in addition to those, we started therapy. When her corrected age was 1 day, we began attending the specialized service one or two days a week for sessions of conductive therapy. Our therapist told us about the Dévény exercise program, which we tried out. In March, we began attending these exercises on a weekly basis. Our Dévény therapist told us about intensive rehabilitation therapy. So we started going to the Rehabilitation Department at the Buda Children’s Hospital every 2–3 months. Later, we heard about Borsóház, where we still go today.

We are grateful that she can attend the Pető Institute’s Training Preschool, where she is surrounded by conductors and receives daily developmental support. During her first year of preschool, we stopped the previous developmental interventions. Then we tried Pfaffenrot therapy, and later we started going to Borsóház on Fridays for manual therapy and active exercise.

They prepared us for the worst. Based on Jana’s diagnosis, she shouldn’t be where she is now; she shouldn’t be able to do just about anything. But it’s so wonderful that she didn’t read her medical reports. By the grace of God, she continues to make progress.

Mobility: moves around by crawling on her own; takes steps with assistance and using a walking aid; sits independently.

Communication: She makes herself understood through sign language, gestures, and a few simple words.

She understands everything and learns very quickly. She enjoys participating in preschool and therapy sessions. 

Currently, in addition to preschool, she attends special development sessions at Borsóház one day a week. We also go there from time to time for intensive weeks, as well as to the Buda Children’s Hospital and the Újbuda Child Development Center.

For Jana, everyday life and everyday activities—moving around, eating, drinking, playing—all require extra effort. But she doesn’t give up. And neither do we. We try to provide her with every opportunity she might need to lead a more independent, fulfilling life. You can help with this, too, through your support.

She was born with a complex brain development disorder caused by a buildup of cerebrospinal fluid. Her hydrocephalus is accompanied by several underlying conditions.

Hypotonia: decreased muscle tone. In Jana’s case, it’s mixed: in some areas her muscles are tight, in others they’re flaccid, and in still other areas they’re underdeveloped.

Epilepsy: It causes recurrent seizures due to sudden, excessive electrical activity in brain cells, which results in the death of nerve cells. Currently, petit mal seizures are very common; we are working toward achieving remission.

We don't know what else Jana is capable of learning, but we do know that she doesn't know her limits. She pushes them; she's curious, determined, and motivated. And that's a good thing.