“I want to give something back”
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How does one approach an interview with someone who has had to endure so much unbearable pain? Which questions are justified, and which ones reopen healed wounds? How does one talk about a child who is no longer with us? All these thoughts race through one’s mind when meeting Sandra Mertzokat and her partner Sven Hirschfeld. We met the couple to talk about their most personal story: the story of Emma, her tragic accident, and her own foundation - all matters that are naturally very close to their hearts.
Mrs Mertzokat, what was your life like ten years ago?
We lived in a city apartment in Düsseldorf, as a family. My son was twelve, Katharina was ten, and Emma, my youngest, was eight. We were highly active. Katharina danced ballet, while my son and Emma loved playing football.
What happened then?
The kids and I went on holiday in 2008. I was out and about with my middle child when I received the call. Emma was seriously injured, and a helicopter was on the way. I sensed right away that it was more than just a broken leg… In the hospital itself, Emma was unconscious for a week and we had no clue what was going to happen with her. The doctors diagnosed an oxygen deficiency in the brain and a rupture of the second cervical vertebra. Despite all of this, I was in complete denial regarding the possibility of permanent damage.
What happened next?
Emma slowly regained consciousness in the ICU and was ventilated artificially. Three weeks later, she was transferred to a special clinic in Bochum. I was with her all the time. She reacted with her eyes and we agreed upon signs to facilitate communication. She seemed so clear in her head. At one point, it seemed like she was slowly regaining the ability to talk, and we were able to have conversations.
How did you feel about that?
I was pretty much constantly by her side for half a year. Even though one is told to adapt to the new situation, one simply doesn’t believe that things will stay as they are. It took a while for all of it to sink in. I remember when Emma saw herself in the mirror with a tube in her throat for the very first time. That really hurt.
In what condition did your daughter return home?
Emma’s spinal cord was injured at the level of the second cervical vertebra and she was being ventilated artificially, but she was stable and fully aware mentally. However, none of her body functions returned despite various therapies. She couldn’t even support her own head and had to be aspirated regularly. We were dependent on 24h care.
How did that change everyday life?
Almost everything revolved around Emma, which was fine. The high level of the injury meant that we always had a nurse in the house. Emma was still a child; either she liked someone or not. If she didn’t like one of the nurses, I had to compensate by shouldering additional care duties. As a result, I was often completely shattered, especially because it was very important to me not to neglect my other two children. They were also the reason why we didn’t move. Their school, friends, and community clubs were all here. We were all integrated well within our neighborhood. Michael Weichler, one of our neighbours, then organised a charity run and collected donations for us. One campaign followed the other – it really helped us a lot. The people did so much for us.
Was that one of the reasons why you launched your own foundation in 2011?
Yes. We no longer had any financial worries due to the incredible generosity of people around us. Emma’s story became quite well known in Düsseldorf. We wanted to help other children and youths with spinal cord injuries by utilising the excellent contacts we had made. Michael was the driving force behind the project. Seeing that Emma loved football so much, we launched ELFMETERstiftung in her spirit. It symbolises a second chance after a foul.
How was Emma feeling at that time?
She was able to speak in the rhythm of the artificial respiration. Her voice was soft, yet still clear. She was able to eat and drink. After a while, she even resumed her primary school education. She handled the syllabus without problems with the assistance of a nurse, so she soon progressed to secondary school. Looking back, she had found real friends there. Our family laughed a lot during that time. Outwardly, we always seemed happy. Naturally, I also dropped my guard when I was alone with Emma. It was a real rollercoaster: from “we can do it” to sheer desperation.
Doctors in Hamburg implanted a phrenic nerve pacemaker in 2013 to relieve her from artificial respiration. She looked “more normal”, which was very important to her. Sven, who is my partner today, was the doctor in charge at the time.
What happened in 2014?
Emma was fourteen and on holiday in Holland with her nurses, her sister, and her friends. Sven and I were on call nearby. Then we received a call informing us that something was wrong.
Hirschfeld: When we arrived, the ventilation was not working properly, and I suspected that she had pneumonia. When one is – like Emma – dependent on permanent artificial respiration, the danger of that happening is much higher due to the direct access to the trachea. Today we know that one or more chronic infections had caused a septic clot on a heart valve. It grew quietly over months…
Mertzokat: Back then, I was absolutely convinced that she would be fine again after taking antibiotics.
Sadly, that’s not what happened…
The clot came loose and impeded the blood flow to the brain due to an increase in circulatory stress while we moved her. I got to see Emma before she was transferred to the ICU. Despite intensive care and emergency surgery, she passed away two days later. Her family and nurses were with her right until the very end.
Four years on, this story is still incredibly distressing…
I think of Emma every single day. I protect myself from feeling the pain permanently by cutting off certain thoughts. Emma used to hate it when people cried because of her. Naturally, there are moments when you question the meaning of it all. If I allow myself to think she is still with us, I also think about what it would be like if she was healthy.
Is this one of the reasons why you support Wings for Life?
Our foundation should not only support children and youths, but also promote research and healing. That’s why we decided to donate to a project funded by Wings for Life.
How is your life today?
We live our lives more consciously and I’m not rattled as easily I used to be. Things have been put in perspective. I now live in Hamburg with my daughter and Sven. The distance helps. My son went to America to study after Emma’s death. Sven and I love music, enjoy travelling, and pursue our careers. Both of us are still active in the foundation. Sven is a medical advisor, while I am one of five trustees.
Is it difficult to be confronted with fates like Emma’s over and over again?
Every now and then, I do feel like I am travelling back in time and am incredibly sad. The same story repeats itself and families are ripped apart. However, it feels more like giving something back to me.
Hirschfeld: Reading a doctor’s letter can be heart-breaking at times. As a general practitioner, I know how dramatic the stories are. I know the harrowing fate behind them. People mostly ask for financial help for a car to remain mobile. Sometimes they ask for smaller things like a ticket to a football match.
Mrs Mertzokat, you have received an award for your work.
Yes. My volunteer work for the foundation was honoured by “Goldenes Bild der Frau”. However, I had doubts as to whether I should accept the award and risk bringing up our story again. I discussed the issue with my children and their father. They are all proud that our foundation is still active and that Emma lives on within it.
What do you wish for?
Health, a conscious life, and that my children make their own way… And I hope that everyone involved in this story may find peace.
You can vote for Sandra Mertzokat here. The winner of the audience award receives 30,000 Euros for the corresponding project.