The best decision of our lives
Henry, lung transplant since 2017 at the age of one year
Giving courage... we would like to contribute to this. Simply to tell other parents our own story and perhaps be a little help in making a big, vital decision. That's why we're telling you about Henry.
We spent the first few weeks together on home oxygen.
Henry and his twin brother Louis were born prematurely in the 29th week of pregnancy. We quickly noticed clear differences in their health development. While Louis developed well medically, Henry's condition steadily deteriorated. The physicians on the premature baby ward were unable to tell us the exact cause of this. The only certainty was that there was a problem with his lungs and that his health was critical. But Henry fought his way through and after 10 weeks both babies could be discharged home. We spent the first few weeks together on oxygen at home.
The decision was not difficult. Henry should live!
Then Henry got his first infection and his health deteriorated. He was admitted to the MHH. All the tests were carried out here, which led to the diagnosis of pulmonary hypertension (PHT). We had never heard of this disease before. We were all the more shocked when we found out that it was incurable and life-threatening and that Henry had the most severe form of it. We were advised to keep any form of excitement or exertion away from Henry. This is not so easy with an 8 month old baby who can only express himself by crying. The physicians told us about the only option available for Henry - a lung transplant. However, there was no experience with such small children. Henry was first given medication. However, his condition deteriorated quickly and the physicians decided to transplant Henry after all. After long discussions and many examinations, Henry was put on the list. The decision was not a difficult one. Henry should live!
After 8 months of waiting, the time had come
With positive thoughts, we decided to have the transplant. It was the best decision of our lives. Henry's health was stable at first, but deteriorated during the waiting period. Our fears grew that he might not make it through the operation. His strength and general condition deteriorated, so there was talk of having to take him off the list. After 8 months of waiting, the time had come. The call from the MHH came that night. Here we go. We were filled with fear and excitement. But we always had the feeling that we had made the right decision for Henry. And that's what matters. After 12 hours, the operation was over and we were allowed to see him that night.
We are also thinking of the donor family in particular on this day
It was an indescribable feeling. The weeks that followed were full of ups and downs. It wasn't always easy and there were also some complications. But after 8 weeks at the MHH, Henry was allowed to go home. A few days later, our whole family went to Tannheim for rehab. We all enjoyed it. A new life began. Every year on the day of the transplant, we celebrate Henry's lung birthday. It's his second birthday and that's how we celebrate it. But on that day we also think of the donor family in particular and light a candle for them. We are eternally grateful to them for this great gift!
With the transplant, we have achieved what we wanted for him: LIFE
Henry has now been transplanted for over 4 years. He has developed into a great boy who loves to move around. He loves jumping on his trampoline, playing around with his brothers and swimming in the sea. With the transplant, we have achieved what we wanted for him: LIFE. Henry was 1 year old at the time and the smallest lung transplant patient at the MHH. Today, even smaller children are successfully transplanted. The great team of physicians, nurses and carers make it possible.
THANK YOU!
We would like to take this opportunity to send a big THANK YOU to Dr. Tudorache and the surgical team, as well as to the entire team on wards 67 and 61b, to Dr. Carsten Müller, Dr. Nico Schwerk and Dr. Carlens, the outpatient team, who continue to provide us with excellent care, and to Prof. Dr. Hansmann and the pediatric cardiology team.