Dani Wilson from Johannesburg shares her story of Hudson, her baby son…

1. Which organ did your child receive, and in what year?
My son Hudson received a liver when he was just 8 weeks old in April 2022. He received a hyper-reduced mono segment of my friend’s liver.

2. Why a living donor was used VS putting him on a list?
Hudson went into acute liver failure at 7 weeks old, he was transferred to Donald Gordon and they needed to establish the cause of liver failure. He deteriorated so fast that once they had ruled out HLH his only chance at life was an immediate liver transplant, there was no time to wait for a donor on a list. Also, it is extremely rare to get baby organ donors. Also due to his size and age finding a donor to fit him was extremely difficult, which is why they chose to do the hyper-reduced mono segment transplant. He was the youngest and smallest ever done in Africa.

3. Describe the emotions experienced when you were told the donor is a match?
22 April was the wildest roller coaster of our lives. Hudson started with stomach cramps on the Monday, the Tuesday he seemed better but was looking yellow which was when we rushed him for blood tests. When the results came in we rushed him to the Sandton NICU where our paed had already reached out to the transplant team at Donald Gordon. He was transferred to DG on the Wednesday afternoon and their initial thoughts were HLH, the Friday morning a bone marrow biopsy was scheduled to conclude if it was HLH or not. Our transplant coordinator wanted to prepare us in case it was not HLH as the only option then would be a transplant. We were lucky enough to have family and friends there with us already who were willing to be tested. It was also one of my closest friends’ birthdays that day, I called to tell her what was going on and wish her a happy birthday and she was there that afternoon getting tested. We were racing against time and they were worrying he wouldn’t even make it to transplant so when I got the call Ali was a match she ran to the ICU and we just cried tears of joy. I had never been so happy to receive a call in my life. It was her birthday and that night they were both wheeled into theatre for transplant.

4. How did he manage with the immunosuppressants & meds after transplant?
We had a really rough ride with the immunosuppressants. We battled to get his tacro dose right and was often very high, causing a host of other issues like seizures etc. The tacro ultimately caused sinusoidal obstruction in his new liver which meant his levels never went down to the numbers they should have been. He ended up needing a partial splenectomy in December 2022 and after that we moved him onto everolimus which was much better for him. 2023 he was thriving and living a normal life with minimal side effects from the immunosuppressants.

5. What was life like after the transplant?
Life after transplant was the hardest thing our family has ever gone through, we were told it would be tough but we never imagined it would be that hard, but it was all worth it because we got 19 more months with our amazing boy. He started thriving and was living his best life. He was such a happy and amazing little boy who loved his family. No matter what he went through he always came out smiling.

6. When did he pass away?
November 2023

7. What was the cause?
Hudson was doing so so well but think he got a UTI and went into septic shock and was gone so quickly. The medical team tried so so hard to save him.”

8. What do you have to say to parents who are struggling with the decision of whether or not they would donate their child’s organs.
Do it! It is a gift you could never comprehend. It is a chance for part of your child to live on and give another family and their child a chance at life.

9. Why do you think there is a shortage of donors in South Africa?
I think there is such a stigma about it and that people don’t even realise there are families going through this trauma.

10. If you could describe transplant in one word, what would it be?
Life-changing