When a tumor grows in the area that is usually restricted for surgery, patients seeking consultation always hear warnings of breathing difficulty after surgery, of the risk of coma, and of the possibility that the brain will "crash" and never "turn on" again. A desperate and hopeless prospect.
"What finally made up my mind was thinking that everybody can drive a car, but he drives only this car, so, of course, he did get most familiar with it. Surgery on the brain is the same, he can 'just do it' thanks to his many successful experiences.”
- Father of a patient with a brainstem cavernoma in the medulla oblongata
When a child gets sick, there is only one thing on the parent's minds: that the child gets well. Today's report is about a father of a brainstem cavernoma patient describing his child's treatment journey. When he found out that we wanted to interview him, he kept saying that he would be happy to do his bit if it could help others. The father displayed no lack of confidence and optimism. His parlance was simple and heart-warming.
Throughout the interview, his eyes shone with happiness and pride. To keep the family healthy and together, they walked down the difficult road of treatment shoulder by shoulder until they finally won the battle against the brainstem cavernoma.
A brief medical history of 19 year old Henry and his brainstem cavernoma in the medulla
The medulla oblongata in the brainstem is the control center for the heartbeat, breathing and other vital functions. It is densely populated with nerve nuclei. A cavernoma in this area is like a ticking time bomb with repeated bleedings causing paralysis of legs and arms, breathing difficulties, weakness and even coma. For the longest time, surgery in this area has been a challenge.
19 year old Henry (name changed) is an optimistic, bright kid. In college, Henry had a lot of plans for the future. High in spirits and with life ahead of him - he instead was diagnosed with a cavernoma in his brainstem.... Henry and his family were devastated.
From the day he was diagnosed, Henry's father took him to every hospital in the country seeking medical help. But everywhere they were told that surgery in the medulla oblongata of the brainstem was too difficult and too risky. They couldn't find the help they needed. "They said, if you do this surgery, you will risk your life. You will be paralysed, either completely or at least from the neck down.”
But the parents were willing to fight for their child, then just 19 years old. "He is a very capable boy, whatever he takes on, he always gives it his best! But when that happened, my son just broke down." What is the meaning of life if it is spent in constant fear? “Maybe you dare to bet the cavernoma won't bleed for the rest of your life, but no one can guarantee you that!" If another big bleeding happened, the child might have been paralyzed, and his parents might never see their son smile again.
“The time between their consultation with Professor Bertalanffy and the final decision for the surgery was not easy at all. The father faced opposition from all sides, equally out of care for Henry. "They said: How many people are there in Germany? We definitely do more of these kinds of cases here at home." They were afraid that making a decision on such short notice would cause harm to their child. "As head of the family, Henry’s father was under such tremendous pressure that many people may find difficult to relate to. But as the child's father, not only did he have to have the courage to give everything for his child, but he would also have to bear the consequences of the decisions that affected him.
"I don't care if the physician is German or American, most important is that he specializes in this kind of procedure!” Henry's father knows very well: "Only surgery can make any difference at all." Finally, to rid his son of the disease once and for all, Henry's father, against all opposition, arranged for his son's surgery.
He was then selected for a live surgery during the 2022 Sino-German Academic Exchange - A successful live surgery demonstration by INC's professor Bertalanffy and the team of the Suzhou Dushu Lake Hospital under its director Dr. Huang Yulun, a surgery that saved the boy's live.
Live broadcast of Henry's surgery with successful total resection of the cavernoma under intra-operative neurophysiological monitoring by Professor Bertalanffy.
After the successful surgery, Henry was very proud, feeling like a hero after overcoming an insurmountable obstacle. He kept reassuring his father: Everything is fine with me, nothing is wrong." At this point, Henry's father was relieved to see his boy had really grown up.”
On the first post-operative day, Professor Bertalanffy visited the ICU. Henry was conscious, responsive and could move his arms and legs.
On the firth post-operative day, Professor Bertalanffy visited the normal ward to see after Henry.
On the eighth post-operative day, Henry showed a good recovery. Upon hearing that Professor Bertalanffy was coming to visit, he put on his nice jacket and started walking around independently.
Three months after the surgery, Henry freely agreed to an interview with INC. We visited him on his campus, where he shared his experience with us. We hope this boy can inspire our patients to bravely face the difficulties ahead and overcome them. Henry happily described his campus life: "After the surgery, school went really well, and I was able to keep up with my courses. Doing homework, working on my computer, studying computer science, everything is normal. There are no after-effects, everything is smooth. I usually eat well, sleep well, and have a good relationship with my roommates. Since I came back, they care a lot about me. Overall, I think my life is pretty good.”
Henry returning to his campus.