A life for Theo
When Theo laughs, it's a yes to life every time. We didn't think we would ever be able to lead such a "normal life" with our little hero, but we were very lucky. This is our story, which we would like to share with you. Because it is heartbreaking, exhausting, courageous, lively, hopeful and right now just beautiful.
A challenging start to life
We already knew during the pregnancy that something was wrong with the little man in my belly. He wasn't growing properly and there were many complications. On September 8, 2021, Theo was born by caesarean section at 33 weeks in Berlin-Tempelhof. He weighed 1335 grams and was only 38 cm tall. We were allowed to see him briefly, after which he went straight to the intensive care unit and was ventilated via a mask. A short time later, he had to have a tube inserted. His lungs weren't working properly and it soon became clear that the physicians were at a loss as to what kind of illness Theo had. There were lots of genetic tests, wild speculation and various clinical pictures that were thrown at us - none of which were confirmed. The ignorance and worry about him almost consumed us.
Unexpected rescue
In the end, we were lucky. As the local physician didn't know what to do and had advised us to accept that Theo was going to die, we were told to go to a hospice. We were devastated and desperate. It was the worst time in our lives. But as we still didn't have a diagnosis, I mustered up all my strength and contacted the Charité hospital on my own initiative. Theo needed a lung biopsy to find out what was wrong with his lungs. We were in the middle of the coronavirus period and the Charité only carried out vital examinations. That's how we got in touch with Dr . Nicolaus Schwerk at Hannover Medical School (MHH). And that was the best thing that could have ever happened to us.
A diagnosis at last
On December 6, 2021, we were transferred from Berlin to Hanover by intensive care transport. We were very well received and supported here. I stayed with Theo in Hanover and was accommodated in Haus Schutzengel. Tobias had to work and commuted between Berlin and Hanover. It was a very hard time for us. After a few weeks, we received the diagnosis we had been waiting for. Theo has the genetic disease STAT 3 GOF. This is incredibly rare and like a miracle disease because it can affect all organs and bodily functions. It is also incurable, but we have managed to get it under control quite well with medication.
Hope and worry: Theo's journey home
It was a long road before Theo got better. After his condition deteriorated after a few weeks, he was in intensive care and we had to make difficult decisions if his condition deteriorated any further. We expected the worst. But Theo fought and came back. And we wanted to go home. With the help of a fabulous outpatient care team, that was possible. Theo had a high flow with 15 liters of flow and an additional 15 liters of oxygen per minute. A child like Theo was not really at home. Because there were difficulties with the transport, Dr. Schwerk personally accompanied us to Berlin in the ambulance. But we made it. We even celebrated Theo's first birthday in our garden. He was only able to go outside for a very short time - without high flow, but with oxygen in his nose. Everyone was there - friends, family, neighbors, the nurses. It was wonderful and sad at the same time, because we didn't know whether it might be the last birthday we would celebrate with him.
The phone call that changed everything
We had to decide twice whether to put Theo on the waiting list for a new lung. The first time, we decided against it. The second time, after a few months at home in which he had otherwise developed fabulously, except for his lungs, we decided to go for it. And only a short time later, our lives were turned upside down again. At the beginning of November 2022, the phone rang at around 11 pm: there might be a lung for Theo. We had only been on the transplant list for three days. My whole body was shaking and I was stuttering. After that, everything happened very quickly. The MHH organized the transport and we drove to Hanover that very night. Theo was very calm and relaxed. Even when we arrived on ward 63, he was in a good mood and laughed the whole time. The video I sent to my parents while we were waiting for the further examinations showed him happy - as if he knew that everything would be fine in the end. The lung came from a little boy whose parents made a decision in their hour of need that saved Theo's life. The lung was a perfect fit. After seven hours in the operating room, we received the call that everything had gone well and we were allowed to see him shortly afterwards.
Initial challenges after the transplant
The initial period after the transplant was incredibly exhausting. Not everything went smoothly, and after a good start, Theo's condition deteriorated. On the advice of the physicians, we decided to agree to a tracheostomy to help Theo breathe. This was more difficult for us than the decision to have Theo put on the transplant list. After more than a month in the intensive care unit, we were discharged with him to the normal ward. We learned how to wind up the medication, how to care for the tracheostoma and, above all, how to deal with him. To be honest, we were often exhausted and at the end of our tether. I continued to work from home on the side and was very lucky to have such an understanding employer. We were incredibly worried about being discharged home with a tracheostoma. But Theo fought. As always. And after 3.5 months in hospital, we were allowed to take him home. Without a tracheostoma and only with some oxygen.
So many precious moments with Theo
Since then, our lives have changed completely. We can change rooms with Theo without having to push large oxygen containers behind us or preheat the high flow. We can just put him in the baby carriage and go out with him. He has become much more mobile and stronger and is developing beautifully. He has started babbling, which is wonderful because we always thought he might not be able to talk. We have already been on vacation with him at the seaside and at the lake, we have been in rehab in the mountains and have been able to visit our families in NRW for the first time in a long time. We have a life and we are incredibly grateful for that.
Of course, not everything always runs smoothly, Theo has already had an acute lung rejection, and the many medications also bring many new problems with them. We have regular check-ups in Hanover. Tobias had to extend his parental leave so that he could look after Theo at home, because of course he can't go to a nursery or a childminder yet. Nevertheless, it's all worth it.
There is only one thing left to say: Thank you!
It is important for us to emphasize the competent team of physicians and surgeons, the kind nursing team and the great physiotherapists (thank you, Mrs. Münkel!) on wards 63 and 67 and to express our thanks, which we cannot even put into words. We are so incredibly happy that we could not be admitted to the Charité in Berlin during Corona and instead ended up with Dr. Carlens, Dr. Müller, Dr. Seidemann, Dr. Jack, Dr. Köditz, Dr. Bobylev and Dr. Witte and many others. Together with Nursing staff from both wards, they fought with us every day.
Few people know as well as we do how important it is to have a physician who believes in you. That is why it is particularly important for us to mention Dr. Schwerk separately. Without him, Theo would no longer be alive. We are eternally grateful to him for his humanity, his belief in us, his honesty, perseverance and his always open ear.
You can find more stories of encouragement here.