LIVEr Champion- Ceraphina Levesque
Ceraphina was born a healthy baby girl on July 1, 2019. But 48 hours later, I was struck with the news that my precious new baby potentially had a chronic, progressive, liver disease called Biliary Atresia or BA. BA is a rare disease which affects 1 out of every 12,000 babies born in the United States. BA prevents bile from leaving the liver, causing a toxic back up that rapidly destroying the liver; without surgery to fix the problem, BA causes liver failure and death soon after birth. To confirm the suspected diagnosis, Ceraphina had endless tests, scans, and labs done. We met with a surgeon, Dr. Kurkubache, and were informed that Ceraphina, barely a few weeks old, would need a surgery called a Kasai Procedure. A Kasai Procedure tries to fix the problem by creating a new channel for bile to leave her liver and exit into her small intestine. One third of children who have a Kasai procedure will have normal bile flow and may never need a transplant. The other two thirds will need a transplant at some point: some soon after the Kasai procedure and the others at some later point.
Ceraphina had her Kasai done on July 29, 2019. She is now 8 months out of surgery and 8 months old. The last 8 months have not been without obstacles—6 hospital stays, frequent doctors’ visits, lab work, weight checks, medications and vitamins, special formula, supplements for breast milk, and an NG tube (a feeding tube that goes through her nose) to try to help her gain weight. I am Ceraphina’s primary caregiver. I’ve had to watch my baby get blood taken from places I would have never imagined, like a vein in her scalp. Over the last 6 months I’ve learned how to feed my baby through an NG tube. I am so thankful for all of the incredible people in her care team.
Ceraphina has finally doubled her birth weight—she is 14 pounds now! Day in, and day out, no matter what obstacle has tried to stand in the way, together we have crushed it! She is thriving!
Ceraphina has given me a new appreciation for life. At just 8 months old she doesn’t have the luxury of carefree living. I don’t want her to grow up and dwell on her illness. I want her to enjoy every moment of her life because we don’t know when our journey will bring us to a liver transplant.
The worst part is knowing she needs a new liver but can’t receive one until she gets sicker. There is no way to reverse or stop this disease. Research is still being done about BA and more is being learned. One day I hope there are medical treatments other than Kasai that can fix BA. The Kasai has saved so many lives but not enough. Nobody should have to fear for the child’s life or watch them in pain. I know that fear though. Remember, life is such a precious gift! Thank you for all the love, kindness, compassion and prayers from our supporters!