TESTIMONY – Maïfée Batté was born with an extremely rare birth defect: her main organs, including her heart, mirror their usual position. This octogenarian, full of life, campaigns for organ donation.
A 25% drop in 2020. Like a significant number of medical activities, organ transplants have been strongly impacted by the Covid-19 pandemic. 4417 transplants were thus carried out in 2020 against 5901 in 2019. Maïfée Batté knows something about it, she who was chosen by the association Transform – which raises awareness about organ donation – as a godmother in 2021 in order to convince the French to donate their organs. If she herself did not have an organ transplant, she was chosen by the organization for her personal struggle. Because Maïfée, 81, was born with an extremely rare birth defect: her main viscera and organs are reversed. Le Figaro met her.
LE FIGARO. – When did you find out that your heart was upside down?
Maïfée BATTE .- I must have been six years old. When my parents divorced, my mother took me to France because I was born in Africa, in Congo. Trying to listen to my heart, my mom got worried because she couldn’t hear any sound, she thought there was a concern. So we went to the hospital when we arrived. The doctors discovered that my heart is inverted, it is on the right and not on the left like the vast majority of people. I have a rare anomaly called Situs inversus.
What does this mean exactly?
To put it simply, all my organs are inverted, mirroring their usual position. My heart is therefore located, as I said, on the right side of the thorax. But that’s not all, most of my organs are actually inverted. I found out when I had appendicitis surgery when I was seven / eight years old. The doctors first gave me x-rays and eventually operated on the left, noticing that my organs were inverted. While my brother was operated at the same time but on the right side (laughs). My liver is also on the left, for example. The doctors who followed me told me that it gave them a headache to look at my ultrasounds!
This malformation must have had a major impact on your life …
I did not experience it as something terrible. The doctors told me that I certainly couldn’t have children. I had three. With each pregnancy, on the other hand, it was necessary to advance the labor. And then, it is true that I was never able to move to the countryside as I wanted, because I had to be always near a hospital and a cardiologist.
But otherwise I was still in good shape. At the time, I was doing my garden, I did practically all trades, the last one was also a teacher. I loved it, I had finally found the job that suited me. And then, six months later I had a stroke, I was 50, and I blamed the whole world. My cardiologist told me after the fact that the problems usually start after 50 years. A clot formed in my skull because my heart was aching.
Is that when you decide to have the operation?
Yes. After my stroke, I couldn’t speak or write. I was paralyzed on one side but by dint of will, I managed to get everything back. However, I couldn’t stand chronic fatigue any longer. I spent my time between my bed and the wheelchair, it was horrible. I couldn’t walk anymore, my heart was too tired. So, I made an appointment with a cardiologist who referred me to Professor Élie Alain Serraf. He operated on me open-hearted and changed a valve. I have not been transplanted, my heart has not been changed, but he has repaired it.
Normally today, babies born with an anomaly like mine are operated on very early. Even at the age of fifty, I therefore found myself hospitalized in a pediatric unit. The operation lasted between seven and eight hours and then I spent almost ten days in intensive care. The operation was very risky, but I couldn’t stay like this.
What has this surgery changed for you?
I was able to live again. After the operation, I was able to climb the hill to go to the hospital cafeteria, for example. That was 13 years ago. My heart is tired again but I am 81 years old, there is nothing more to do. They can no longer operate on me today. You have to live with the times!
Today, you raise awareness of organ donation as a sponsor of the association Transform . How did you come to this fight?
The association and their partner, the company SAP, asked me to be a sponsor this year and I accepted with great pleasure because organ donation is vital. I was not transplanted but had a major heart operation that allowed me to come back to life. We absolutely have to raise awareness about organ donation, so I take my role very seriously. I am responsible for convincing people to donate some of their flesh. This is not obvious. When you have a motorcyclist who has an accident, who is young, we go to the family to ask them if they want to give the heart, for example. But it’s still a part of their loved one, it’s not obvious. And then religion also comes into play. This is what I am faced with. Sometimes I manage to convince them, but not always.
I am also the godmother of a literary competition * to raise awareness of organ donation through poems, drawings, short texts on the theme “a link that unites us”. I am in the jury, so I will be able to read all these writings which will then be edited and published in a booklet. The works can be exhibited in town halls but also distributed during the race of the heart, a solidarity race for organ transplantation.
Moreover, writing is particularly important for you …
I actually wrote a book (My heart upside down, Editor’s note) on my story, pushed by my doctor in particular. Learning to write again after my stroke was extremely difficult so I am very proud of this book. It did me a lot of good to write it but when I got to the part about my stroke I had a really hard time telling it. I couldn’t transcribe it, it was still anchored in me, even ten years later. Even today, it still disturbs me a little to talk about it. It’s such a shock to find yourself paralyzed, not being able to speak or write. So when the book came out in December, it was really a great joy, a great adventure.
* To participate in the competition on organ donation awareness, send your works before September 12 to [email protected]