Jacob’s Medical Miracle

When Jacob first came home from the hospital as a newborn in December of 2019, we knew to keep an eye on his skin color due to his older brother, Lucas’s brief episode of jaundice when he was born.  After spending two nights at home, we returned to the hospital with Jacob, because he was jaundiced – we did not think it was a big deal. We received a call the following morning, alerting us that Jacob was being transferred by ambulance from Scripps Mercy Hospital San Diego to Rady Children’s Hospital because his direct jaundice numbers were rising, and that was not normal.  The next 9 days at the hospital were difficult as they tried to discern the cause of his direct jaundice – dozens of tests were performed, with each ruling out one possible cause or another.  We were discharged for Christmas but told we would need to return when his genetic tests came back from the lab in Georgia.

In January we had a doctor’s visit where we were told that the genetic tests came back clear, and Jacob would undergo another ultrasound.  The ultrasound came back inconclusive, and we were told to keep an eye on him.  Over the next month, his jaundice significantly worsened.  At the next doctor’s visit in February, we did not get to go home – he was admitted directly to the hospital, where he was formally diagnosed with biliary atresia. He stayed in the hospital until he could have his Kasai operation. This operation allows the bile to drain. It also buys the child more time in hopes that the child is bigger and healthy enough for transplant.  He was discharged on Valentine’s Day.

Between February and April, Jacob did quite well – nothing more than the monthly doctor’s visit for lab work and a checkup.  However, in May, Jacob developed ascites – a condition where one’s body the accumulates fluid in the peritoneal cavity, causing abdominal swelling.  Jacob’s ascites has caused him to develop multiple infections that have necessitated long hospital stays.  Between May 2020, and October 2020, he has spent over 34 days in the hospital.

In August, he was listed for liver transplant on the national registry.  The main factor in “moving up” the list for a transplant is one’s bilirubin level.  Jacob’s bilirubin level has been normal since his procedure – but other health factors, such as ascites and malnutrition have kept him in peril.  Jacob’s family began the search for a living donor – two people were screened, including his father, but each were ruled ineligible to donate. 

On October 12 in the late afternoon, Children’s Hospital of Los Angeles phoned Jacob’s family – there was an anonymous altruistic living donor from Ohio who would be traveling to Los Angeles to donate a portion of his/her liver to a baby.  The surgeons had determined that Jacob was the ideal candidate. 

Jacob’s transplant was a success – he underwent the procedure on October 20, 2020 and was discharged on November 16, 2020.

With the help of Jacob’s liver team, he is doing well post-transplant.  Since his discharge, he has made 11 trips to Children’s Los Angeles for follow-up care.  We appreciate all of the support Jacob continues to receive.

Funds raised for COTA in honor of Jacob will be used to assist with a lifetime of transplant-related expenses.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.