Liver Transplant for Baby Alivia
Doação protegida
This past year, my family has been blessed with the birth of my baby sister, Alivia, who is now 10 months old. As a family with four sons, we were excited to finally welcome a daughter to the family. Upon coming home, she has been welcomed with warmth and care from her older brothers. After happy weeks of changing diapers and feeding milk bottles, we began to notice irregularities regarding her health. Her eyes tinted yellow, along with her skin, and her stomach was significantly bigger than normal.
We immediately reached out to Alivia’s pediatrician to express our concerns about her health, to which they responded that there was nothing to worry about. The symptoms persisted for the following months. After expressing our concerns a number of times, we were prompted to call the doctor. Upon bringing Alivia to the office, we were provided a different pediatrician, who instantly saw that something was wrong. We were redirected to the Children’s Hospital of Philadelphia (CHOP), where they conducted many tests to uncover what was wrong.
Last November, Alivia was diagnosed with biliary atresia, a rare disease that affects the liver and bile ducts in one of 15,000 to 20,000 infants. She had to go undergo surgery, where they performed tests on her liver and bile ducts, leaving a scar across her stomach. While Thanksgiving festivities were occurring, Alivia spent the holiday season in the NICU at CHOP. Since then, she has been in and out of the hospital receiving treatment to track her health.
As of now, there is no cure for biliary atresia. Because it is a rare disease that affects infants, there is little to no knowledge about it, where doctors cannot explain the cause of it. We’d like to share Alivia’s story, in an effort to help raise awareness. Biliary atresia occurs when a baby’s bile ducts become blocked, which then causes liver damage. As a result, the infant would need a liver transplant (about 80% of patients with biliary atresia will require a liver transplant at some point in their lifetime). To delay the need for a liver transplant, there is a Kasai procedure, which is an operation that replaces the blocked bile duct with the child’s own intestine, which acts as a new duct. In order to deem a Kasai procedure successful, the patient has to wait months in order to receive results. Unfortunately, after a few months of waiting for lab results, we were told that Alivia’s procedure was unsuccessful, leaving the liver transplant to be our only option for her to live a healthy life. Alivia started the transplant evaluation in early April and was recently put on a waiting list for a liver transplant.
Right now, we are in the process of finding a liver donor and preparing Alivia for her transplant. It is not in our nature to ask for help but managing a family of seven on top of Alivia’s medical needs has proved to be a heavy task. In an effort to lessen the financial burden for my family, any donations would be greatly appreciated. Sharing this page would also be appreciated, as we want to raise awareness for biliary atresia. The Pak/Ricca family would like to thank you in advance for your support.
If it’s easier, here’s my Venmo to donate! @andrepak
There’s also a donor form, for those who might be interested: https://penntransplant.donorscreen.org/register/now
We immediately reached out to Alivia’s pediatrician to express our concerns about her health, to which they responded that there was nothing to worry about. The symptoms persisted for the following months. After expressing our concerns a number of times, we were prompted to call the doctor. Upon bringing Alivia to the office, we were provided a different pediatrician, who instantly saw that something was wrong. We were redirected to the Children’s Hospital of Philadelphia (CHOP), where they conducted many tests to uncover what was wrong.
Last November, Alivia was diagnosed with biliary atresia, a rare disease that affects the liver and bile ducts in one of 15,000 to 20,000 infants. She had to go undergo surgery, where they performed tests on her liver and bile ducts, leaving a scar across her stomach. While Thanksgiving festivities were occurring, Alivia spent the holiday season in the NICU at CHOP. Since then, she has been in and out of the hospital receiving treatment to track her health.
As of now, there is no cure for biliary atresia. Because it is a rare disease that affects infants, there is little to no knowledge about it, where doctors cannot explain the cause of it. We’d like to share Alivia’s story, in an effort to help raise awareness. Biliary atresia occurs when a baby’s bile ducts become blocked, which then causes liver damage. As a result, the infant would need a liver transplant (about 80% of patients with biliary atresia will require a liver transplant at some point in their lifetime). To delay the need for a liver transplant, there is a Kasai procedure, which is an operation that replaces the blocked bile duct with the child’s own intestine, which acts as a new duct. In order to deem a Kasai procedure successful, the patient has to wait months in order to receive results. Unfortunately, after a few months of waiting for lab results, we were told that Alivia’s procedure was unsuccessful, leaving the liver transplant to be our only option for her to live a healthy life. Alivia started the transplant evaluation in early April and was recently put on a waiting list for a liver transplant.
Right now, we are in the process of finding a liver donor and preparing Alivia for her transplant. It is not in our nature to ask for help but managing a family of seven on top of Alivia’s medical needs has proved to be a heavy task. In an effort to lessen the financial burden for my family, any donations would be greatly appreciated. Sharing this page would also be appreciated, as we want to raise awareness for biliary atresia. The Pak/Ricca family would like to thank you in advance for your support.
If it’s easier, here’s my Venmo to donate! @andrepak
There’s also a donor form, for those who might be interested: https://penntransplant.donorscreen.org/register/now
Organizadora
Andre Pak
Organizadora
Philadelphia, PA
