Last updated: October 2021
On January 21, 2014 our family received a call for a 17 day old baby boy, Joshua. This precious baby was facing an uncertain future being born dependent on opiods and entering into foster care. He spent his first 18 days in the hospital weaning and having withdrawals from drugs. During that first call we learned this sweet baby was NAS (Neonatal Abstinence Syndrome), exposed to hepatitis C, SPD (Sensory Processing Disorder), and most likely would suffer from further health complications in the coming weeks and months. During our well baby checks we were reassured not to worry about hepatitis C, there was very little chance he would contract it. He had less than a 4% chance HCV would transmit from mother to baby in the womb. We adopted Joshua 8 months later and focused on his health issues at hand; and of course, enjoying our sweet miracle.
Blood work and a positive diagnosis
Before we knew it, Joshua was 18 months old. A few days prior to his check-up, Joshua had a blood draw at the local Children’s Hospital. We had not heard from anyone regarding his test results. Our appointment was rather uneventful, until I asked for the results. When our amazing Pediatrician entered the room she had a completely different tone. The doctor sat down (which she never does) her head fell, her voice was shaken, her face said it all. Finally, she gently stated Joshua tested positive for hepatitis C. I can’t remember anything else, all I can recall to this day is listening to her as tears rolled down my face. She wanted him to come back for another test.
In that instant our lives changed, and our world was turned upside down. We searched the internet for any information we could find regarding children and hepatitis C. Unfortunately there was little information about children, especially babies. With Hep C we felt helpless, reaching out to every organization, and calling pharmaceutical companies to no avail. A few days later I received a call from our beloved Pediatrician, the test was back. Joshua’s viral load was over 12 million, his genotype is 1a, and his liver numbers were very elevated. These results were nothing our local office had seen, she wanted Joshua going to Vanderbilt Children’s Hospital to see a Hepatologist.
Getting approved for treatment
Unfortunately, that first appointment at Vanderbilt was extremely underwhelming. All we left with were more questions and confusion. There wasn’t a preferred treatment, they would simply monitor him and do blood draws every 6 months. As directed we came back in 6 months, Joshua’s liver numbers consistently increased and his viral load was over 15 million. Vanderbilt began bringing us back every 4 weeks for more labs and ultrasounds. Eventually the Hepatologist decided they needed to do a liver biopsy. In her words,” it had to be more than Hep C, because children don’t have disease progression”. At this time Joshua was only 2 years and 10 months. We were told to prepare for him to have autoimmune hepatitis, it was the only explanation. He was admitted into the hospital to complete the biopsy, they kept him overnight to monitor him and his liver. The biopsies went well, thankfully we didn’t have any issues. We expected it was ALL Hep C and it was. Joshua had significant damage to his liver, he had stage F2 fibrosis and inflammation. This was unprecedented. The only explanation for this amount of damage in his liver had to be genetics. It is equal to someone having hepatitis C for 20+ years per his physician.
Joshua’s case really got the doctor’s attention. At less than 3 years old this little guy was suffering from joint, leg, and back pain. He had white stools, gastrointestinal bleeds for months at a time, and an immature immune system. He became accustomed to “pokes”, frequent doctor appointments, and hospitalizations. He wasn’t supposed to be systematic, he was so little! Getting documentation with a “guarded” prognosis is sobering to say the least. My little miracle needed a miracle. We were hopeful to get into a clinical trial due to his stage of disease. Sadly, that didn’t happen. Over the next couple of years Joshua’s viral load got as high as 20.5 million, liver numbers continued to rise. Finally at around 5 years old Joshua’s liver numbers and viral load reduced and stabilized.
We had been told numerous times that a new DAA (Direct Acting Antiviral) treatment was going to be approved very soon for Joshua. We waited and still nothing. Finally, in February 2020 we received the news we had been praying for. Harvoni has been approved for children 3 and up. We are going to get our opportunity to beat this beast!!
Joshua started treatment on March 20th, 2020!!!! Stay tuned for his cure date!!!!!!