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   In an instant, nothing is like it was before. Brigitte Berkhoff is expecting her first child. She is in the 20th week of her pregnancy. The 32-year-old drives to her prenatal care visit- alone.

 

Nothing raises suspicion that she will have a sick and severely disabled child. When the young woman is confronted with the diagnosis, it seems the World stopped turning, and the ground beneath her feet disappeared. Matter- of- factly the doctors inform her that the child has open back and hydrocephaly. Brigitte Berkhoff, an educator in healthcare herself, understands the meaning of it right away. Her child could be mentally challenged and paralyzed. It would need a catheter and permanent care. “I was extremely sad. All of a sudden it became clear: Your life would never be the way you imagined it to be.”

Since then, 16 years have gone by. Son Julian is sitting in a wheelchair paralyzed. At the same time, he is a reflective and happy young man. “Of course, he thinks about the burden life put on him. But many think, that Julian is suffering under his disability, but we see a growing young man, who experiences his world around him as normal” Henrich Berkhoff emphasizes.

 Him and his wife do not give the impression that they are disappointed by life- quite the opposite. “Happiness does not exclude problems” says Brigitte Berkhoff. Nevertheless, she cried a lot in the beginning. “I experienced pure fear. The feeling one has to escape. Why does this happen to us?”

Especially right after the diagnosis, the young parents felt awfully alone. “The first thing the doctors told us was: you do not have to endure this. You do not have to bring this child into this world. Think deep about what you are to endure and what the child has to deal with.” Henrich Berkhoff cannot even talk about it without anger and resentment in his voice. His wife adds,       “ After we got the diagnosis, there was no more talk of a child; the doctors only talked about defected organs.” Luckily, not everybody. The Berkhoffs are grateful for Dr. Brentrup neurology services at Muenster University Clinic. She said: “Mrs. Berkhoff, you will hold a child in your arms.”

Until Julian’s birth, it was still a challenging time for the young family at the old farmhouse in Ahlen- Toennishaeuchen. “The diagnosis got worse every time we had an appointment. We started searching for help. For us it was always clear, we could not live with an abortion- but now, that was tested to the limit. The advisor encouraged me to think about abortion, at least to consider it. But I knew I couldn’t. Maybe, I would have gotten sick myself” says the now 49-year-old after having two more sons.

The pregnant woman found special support through her mom. “She told me she would always be there to help- no matter what our decision would be.” This supportive statement intensely touched her. “I was about 15, when my mom commented that she would never support an abortion- even if her own life was in danger. But she did not want to put any pressure on me.” To have the support system of a large family was true luck in this situation. “Henrich’s mother, who lives with us, helped us from day one until now. She often helped with doctor visits and child care. I am not certain we could have made it without her” says Brigitte Berkhoff.

Helpful was a counseling center who put the family in contact with another family in Greven who had a child with the same diagnosis. “When we rang the doorbell and this young girl opened the door for us, I knew why our decision was the right one” says Henrich Berkhoff.

Today him and his wife occasionally talk to families who are expecting a child with disabilities. Mixed feelings surface when the term prenatal diagnostic appears. “You can prepare better for eventual complications during birth, but you simply do not have the choice to say, this child does not want to live anymore” mentions Henrich Berkhoff. His wife adds, “Both our other children came into this world healthy. But even for them, something could happen tomorrow and we would not simply return them.”

Tristan (14) and Jonathan (8) have it much easier in many situations than their older brother. Nevertheless, Julian is an open minded and curious young man. His parents are convinced, “he will find his way.”

 

Berkhoffs

 

Translated Newspaper Article 

Julian_und_sein_Weg_ins_Leben.pdf