There and back again

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LLeonie Kipfelsberger has a spinal cord injury. Despite her severe injury, she is able to greet us standing on her own two legs and leads us into her light-flooded country kitchen. She and her mother Manuela have invited us to their terraced house in a district of Munich. The entire property is barrier-free. “It was not foreseeable that my youngest daughter would be doing so well without needing a wheelchair or other aids. It’s incredible, really. I am very proud and especially grateful for how well she has recovered,” Manuela explains.

Leonie’s life - and thus the life of her entire family of five - was turned upside down on the 21st of October 2016. The then 16-year-old was strolling through town with a girlfriend. “It was a fun afternoon. We were buying presents. Later, a friend picked us up.” The young driver had only just received his license, so cruising around in his own vehicle was still a completely new experience. “There were five of us. We drove around a little while listening to music. I was sitting directly behind the driver. We were driving way too fast…” The police report later stated that the car was travelling at 60km/h in a 30km/h zone. “In one bend, another vehicle was coming the other way.” The young driver lost control of his fully occupied car and crashed into a tree at an angle. Two teenagers were injured; the others merely suffered shocks. Leonie, however, was injured badly.

“We were entertaining when Leonie’s friends called us,” Manuela adds. They told us that they had already called an ambulance. “My husband drove to the scene of the accident immediately.” When he arrived at the scene, he called his wife and calmed her down. He reported that the plan was to take Leonie to the hospital for tests. “Shortly thereafter, he called me directly from the hospital and told me to come down at once…”. The condition of the 16-year-old was more serious than initially expected.

“You Should Probably Say Goodbye”
The doctors diagnosed a severe craniocerebral trauma, cerebral haemorrhages, and injuries from the 4th to the 7th cervical vertebra. “Upon my arrival, I was told that I should probably say goodbye to my daughter.” Even one and a half years after the accident, this terrible advice still haunts the mother of three. Leonie underwent emergency surgery the same night. A part of her cranial bone was removed in order to lower the intracranial pressure caused by swelling. During a second surgical procedure, the doctors stabilised her injured vertebrae with metal plates. The parents still recall the sobering conversation they had with the senior physician afterwards. “He told us that it was impossible to tell which consequences the head injury would have. Leonie’s spinal cord was swollen from the 3rd cervical vertebra and thus badly damaged. She was paralysed from that vertebra downwards.” Her breathing was also affected. “We were told that, if she survived at all, she could remain immobilised and require artificial respiration,” Manuela says, trying to put the anxiety she felt into words. “There and then, I decided for myself that I would accept it if my Leonie decided not to live like this.”
The young girl was kept in artificial deep sleep for four weeks. Her family, including her two older siblings, feared for her life every single day. “My husband and I talked about if and in which condition she would return home.” In order to spend as much time as possible in the ICU, Manuela decided to close her photography studio. “At first, I just sat with her. As she slowly regained consciousness, we noticed that she understood us and was able to react. It was a huge relief. Even though she couldn’t speak yet, she seemed clear in her head.” 

The Full Extent
For Leonie, everything was pretty blurry at the time - also due to the painkillers she was given. “I remember that I wasn’t scared at all. I felt my body right from the start and I just assumed that I’d feel better soon.” Once she successfully passed all neurological tests, her cranial bone was replaced during a third surgical procedure. She was then transferred to a specialised clinic in Murnau. “That was the first time in weeks that I felt cold, fresh air on my skin.” At this point, the young woman was still not aware of how sensitive her injury actually was. “She had not yet been informed about the full extent of her condition, but even I wasn’t aware of the full extent,” Manuela admits.
Leonie was admitted to a station that specialises in ventilated patients. As part of her occupational therapy, she was given a splint to promote the development of functional hands*. Manuela remembers the horror she felt at the time. “It was really painful for me to see them do that. To a certain extent, it seemed like they were giving up on my child. When my husband and I left the room, I cried in despair for the first time.” Shortly thereafter, the parents started adapting their home. “We moved Leonie’s room and one bathroom to the ground floor. We even prepared for her return in a bed with artificial respiration.” Only then was her daughter informed about her spinal cord injury diagnosis. “Up until then, I thought that I would walk again. Having my potential future explained by a doctor was quite a shock for me. I rejected and repressed many sentiments that were triggered by the diagnosis. I wanted to get well again.”
Her father was especially worried by her reaction. He was afraid that his daughter would be over-enthusiastic and terribly disappointed when the success she was hoping for failed to materialise. Leonie, however, soon made progress and her hopes were confirmed when she managed to wilfully press her foot against a pillow for the first time.”

She was still subjected to artificial respiration and her family started practicing lip-reading. “When that didn’t work, I simply recounted the alphabet and Leonie stopped me at the correct letter,” her mother remembers. It was an intense time for everyone involved. A few weeks later, Leonie was finally being weaned off the artificial respiration machine. Mid-January she was finally able to breathe independently again. “They removed the breathing tube and applied a bandage. I was lying in bed, very still. After all, I had a gaping hole in my throat…”

Like Winning the Lottery
Leonie was subsequently transferred to the general ward and weaned off the opiates. She made further progress by the week. “Soon after, I was put in a wheelchair. That was good, because I could really move my arms for the first time.” In the course of her daily physiotherapy and occupational therapy she even attempted to stand up. “I felt quite dizzy, but I was able to stay on my feet with a little assistance. I thought: If I can do that, surely I can walk!”

Leonie was desperate to return home and practiced transferring from the wheelchair to the bed. Her physicians and therapists were truly baffled by her exceptional progress. “It was nice that some patients saw me as a role model. They were motivated not to give up,” she says, adding: “However, I also felt sorry for some of them, because their bodily functions often didn’t return. Many young people remained ventilated and had to learn how to control their wheelchairs with their chins or mouths. I don’t know if I could have done that…” 
Manuela was equally touched by the fates of the many patients in the spinal cord injury ward. “One boy had suffered similar injuries to Leonie. He was so full of hope, but he never managed to hold cutlery, let alone move his body. As a mother, that was harsh to witness…” 
Leonie was soon allowed to return home for test runs. She was, however, still struggling with controlling her bladder and bowels. “When I saw people in wheelchairs, I was never aware that they no longer have control of those functions. It’s a topic one doesn’t like to talk about, but it is so limiting for those affected.” Slowly but surely, she regained control over her bowels - a huge step. “I was still worried about having to rely on a catheter through my belly button for the rest of my life.” Manuela was plagued by many concerns too. “This topic weighed heavy on my heart. If she wanted to return to school, we would have had to figure out the exact routes to the next toilets and figure out how she could empty her pouch independently.”
Fortunately, Leonie never had to deal with this issue. She was able to go to the toilet on her own for the first time a few months later. Her bladder function was back in sync. This was yet another milestone for the young woman. “I was overjoyed with this new-found independence.” She was still forced to attend daily outpatient therapy for a few months before she could return to school after the summer. “Today, things are working quite well. Even writing is becoming easier by the day.” Twice a week, the now 18-year-old is required to attend physiotherapy and occupational therapy, during which she focuses on strengthening and balance exercises. “Everyone seems to think that I often suffer from headaches after the accident. In fact, I almost never experience such pains. What remains from by severe injury is the limitation of my finger movements.” 

Manuela continues: “You always play that down a little though; you do lack power in your triceps. Every proposed arm movement above head-level is difficult. Leonie is, for example, not able to take the toaster out of the cupboard, because it’s a little higher up. She can’t tie a braid herself. Cutting a schnitzel or preparing a roll is also still problematic. She can’t swim and she’s quite shaky on her legs when she’s tired.” That’s why Manuela supports her daughter as best she can. She witnessed how patient Leonie was with herself every little step on the way. “I became really desperate once though,” Leonie reminds her mother. “It felt like an eternity until I was able to open a bottle of water without help. I had to take many deep breaths before it finally worked.”

A Party for Herself and Others
At the end of the year, mother and daughter decided to organise a party for all those who had helped the family during this difficult time. “So many of Leonie’s friends visited the hospital. I am not sure she would have managed to recover this well without them and the excellent therapists on site,” Manuela muses. “We wanted to give something back to them, our family, and our strong support network. We wanted to say thank you.” The Kipfelsberger family rented an old barn and decorated it with photos of Leonie’s time in hospital, to illustrate her struggle to return to where she is today. “My dad had kept busy researching all aspects of my injury and reading reports about it. That’s how we stumbled upon Wings for Life and the foundation’s work.” Immediately, Leonie was eager to raise money for spinal cord research at her party. Her guests donated generously. At the end of the evening, the homemade donation box contained more than 1,500 Euros.  
“We saw young people who are unable to move due to a spinal cord injury. I am aware that this could also have been Leonie’s fate. Especially as a mother, I want there to be hope for all the other parents whose children have suffered such an injury. Nobody should be without hope after an accident. If there is no research, nothing will ever change…” The 18-year-old is eager to obtain her driving license soon and she has decided to study medicine after graduation. “I want to help others to get better. Especially as I know that one can lose one’s health within seconds.”

*One speaks of a functional hand when the ligaments of the hands of tetraplegics are deliberately shortened. The wrist extension facilitates a gripping function.

A spinal cord injury usually has a less positive outcome. Leonie was tremendously lucky that her spinal cord was not as severely damaged as initially feared. Here you can help us on our way finding a cure for spinal cord injury.