Our common history
Leonard, 10 years old, liver transplant for 9 years
In May 2011, our eldest son Leonard was born four weeks earlier than planned. He was admitted to the premature baby ward and after just a few days, repeated blood tests were carried out to find out why his direct bilirubin level was so high. The senior physician was able to rule out some genetic issues, but could not say what was wrong with Leonard. And even then, the name Dr. Baumann came up in conversation with the senior physician, whom he recommended as a very good pediatric gastroenterologist.
Leonard had his first biopsy when he was just under two months old. Again, something could be ruled out, but no clear diagnosis was made. There were no typical causes for cholestasis. The whole course of the disease could not be correctly classified. The baby's diet was changed to MCT milk and some supportive medication was administered.
In November 2011, we had our first appointment at the pediatric clinic of the Hannover Medical School (MHH). We went there with so much hope and confidence. And at that time, the idea that everything was half as bad and treatable was not yet a distant prospect.
Leonard was getting worse. His skin, his eyes, everything was squeaky yellow
In December, I was hospitalized with Leonard in the children's hospital and he became increasingly yellow. At the time, however, we didn't notice it at all or we suppressed it. An endoscopy was carried out and one day before Christmas Eve Dr. Baumann picked me up for a consultation. And although I already knew inside what it would be about, it knocked the ground from under my feet with full force.
Leonard was six months old, already had cirrhosis of the liver and would not survive without a liver transplant!
A short time later, my husband was tested to see if he was a suitable donor. But his liver, or rather the part to be transplanted, was too big for our little Leonard. Then it was my turn. Leonard was getting worse and worse. His skin, his eyes, everything was squeaky yellow. He had more and more water in his body, his abdominal girth was constantly increasing and all his values were deteriorating rapidly. He now had to take medication 17 times a day! On March 5, 2012, Leonard was admitted to the children's hospital with a severe infection and poor satiety. My husband and I were always by his side.
This little body with the big eyes that literally begged us to help him.
Then came the night of horror that we will never forget for the rest of our lives. Leonard's saturation levels dropped more and more and you could see him getting worse by the hour. This little body with the big eyes that literally begged you to help him. He could hardly breathe. Suddenly everything happened very quickly and we ran with the crib to the intensive care unit. Now we had to wait in agony, hope, pray and just cry. After two hours we were released and the physician told us that Leonard's heart had stopped during intubation and that he had to be resuscitated. His weakened little body simply couldn't withstand it all! In retrospect, this event was even worse than the transplant itself.
On March 26, 2012, the time had come. Leonard was successfully transplanted!
While Leonard was recovering in the intensive care unit, we received the good news that I was allowed to donate part of my liver. The transplant was planned for March 19, 2012. However, as Leonard was not yet fit enough for it, it was postponed by a week.
On March 26, 2012, the time had come. Leonard was successfully transplanted! I certainly don't envy my husband, who had to let us both go into the operating theater that morning, and I'm even glad I slept through it. As my mother has had two lung transplants (2013 & 2019), I am also (unfortunately) familiar with the situation of the waiting relative.
Now it was done and we were so eternally grateful to everyone. But instead of a steady decline, Leonard's values rose again. In addition, he simply had no bowel movements despite all the aids. So on April 10, 2012, his abdomen was opened again. A hematoma had formed over the liver, which was scraped out. The lack of bowel movements was caused by an intestinal obstruction.
Leonard felt much better after the operation and was soon able to shine again. At the end of April, there was even talk of discharge and this gave us new energy. This joy was soon dampened because Leonard had caught rotavirus. His liver values rose and he underwent a biopsy to rule out rejection. Fear and hope again! Fortunately, the all-clear was quickly given.
On May 11, 2012, exactly one year after his birth, Leonard was discharged in good general condition and we were able to celebrate his first birthday at home!!!
A transplant is not a cure, but a lifelong therapy!
Today, Leonard is a very bright, open-minded and inquisitive boy. Physically, he has caught up well and lives without any further restrictions, together with his three younger brothers.
It often happens that people believe that the transplant has "cured" everything without any consequences... no more medication, no risk of rejection. However, a transplant is not a cure, but a lifelong therapy!
It remains to be said that the whole transplant team, from the nurse to the senior physician, did an incredibly great job. We were supported and helped through an indescribably difficult time, which was characterized by fears and worries. We feel great gratitude and respect! The transplant and the fact that Leonard can lead a completely normal life are still a miracle for us. Of course, we also have worries and thoughts about the future. How long will he be able to live well with his mother's liver? And what if this is no longer the case? Possible side effects of lifelong immunosuppression and so on... But as long as these thoughts don't outweigh and interfere with everyday life, we're fine with them. After all, you always worry about your healthy children too. :)
With this in mind, we wish all the big and small fighters all the best on their journey through life!