For more on organ donation, go to www.organdonor.gov or www.donatelifegeorgia.org.
The story of Silas Huffman, who turns one April 29, has captured the imaginations of people nationwide. At four months old, the McDonough infant began having difficulty breathing and was diagnosed with an oversized and underperforming heart. In December, Silas got a new one. Given that April is National Donate Life month, we asked Silas’ mother, Amanda Huffman, to talk about organ donation and how a family that she doesn’t know turned its tragedy into the gift of life for her son.
Q: How is Silas doing?
A: Great. If he didn’t have a feeding tube in his nose, you’d think he was a normal baby.
Q: Why the feeding tube?
A: His heart function was so bad before the transplant that his stomach didn’t get enough blood and he couldn’t handle the feedings. He developed an oral aversion. He has come a long, long way but is just not where he needs to be.
Q: What has the experience with Silas been like?
A: It has been a bumpy, bumpy road. We almost lost him twice. It was remarkable how much he improved the day after the transplant. Then he had a stroke two days after. He has come from not being able to use his left side at all to almost fully recovering. The thing he has going for him is that he is a baby and his brain can heal a lot better than an adult’s.
Q: What is his long-term prognosis?
A: He has to take anti-rejection medication the rest of his life. We know he will eventually have to have another transplant, probably in 15 to 20 years. Other than that, his doctors expect him to have a normal life. They say he will be able to play football. I said, “I don’t think so. He can swim or play chess.”
Q: Do you know anything about the organ donor?
A: We don’t. I would like to meet them. Six months after the transplant, you can write them a letter and give it to a third party. The ball will be in their court.
Q: How has this experience changed your life?
A: It has definitely strengthened my faith. I joke with other moms who have kids who have had heart transplants that we have Post-Traumatic Stress Disorder. That is not far off.
Q: Silas has taken a lot of your time. How do you make sure your two daughters get attention, too?
A: We do special things with them like taking them to the movies or a bounce house. They let you know when they need daddy and mommy attention. We try not to let it get to that point.
Q: Can you talk about the expense of the transplant?
A: The hospital bill alone was $2 million — that doesn’t cover surgeon fees and thankfully we haven’t received that bill yet. We do have insurance but if I have to pay for this until I die, it is worth it to have Silas here.
Q: Your family is partnering with the Children’s Organ Transplant Association. What is that?
A: It partners with families to help raise money and we have a fundraising page on their site. We have been blessed that people have donated a total of $25,000 to date. We are putting together a 5K and 10K in July to help raise money.
Q: Silas’ story generated a lot of publicity in the news media and on social media. Are you surprised by that?
A: I am. I think his little smile would melt anyone’s heart and apparently it did. Part of why people know about him might be because of my husband’s career — he plays bass in Casting Crowns, a Christian rock band. It is mind-boggling to me that so many people love Silas as much as I do.
Q: Had you ever thought about organ donation before Silas’ transplant?
A: I have always been an organ donor. Did I ever think about it for my kids? No. Having gone through this with Silas, if something were to happen to one of my children, God forbid, it would be an easy decision for me to donate their organs. You can turn a tragedy into something beautiful.
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