Meet Dani, Jay, Jackson and Finley Sandstrom. We live in Snohomish, WA, and our youngest son Finley was officially diagnosed with Alagille Syndrome in April 2021. Before Finley’s birth, we knew something was wrong with our sweet peanut. At the 20 weeks ultrasound, doctors noticed that his bowels were “shiny”, and they could not see all of the chambers of his heart. We were then referred to a high-risk doctor through Seattle Children’s Hospital to learn more.
Fast forward to January 2021. I went back for my monthly high risk ultrasound appointment. I was almost 8 months pregnant. We received both great and terrible news- Finley’s bowel had unblocked on its own but he had dropped to the 8th percentile for weight. Due to Covid, I had to attend all ultrasounds alone and had to hear this news without any support system. As a mother I was crushed. Drowning in concerns for my child, knowing we wouldn’t know the extent of the issues until he was born. I honestly believe the stress of this news caused me to go into labor just 7 hours after my final ultrasound.
After a terrifying delivery, Finley was born weighing 5lbs 1oz and just 17.5 inches long. He weighed just enough that I was able to have that special golden hour with my newborn. After just an hour, Finley was admitted to the NICU for normal premature baby issues. Two weeks later, we were heading home and had a scheduled appointment with the GI department 8 weeks out.
Finley went to his first pediatrician appointment, and she noticed a few things: Finley wasn’t gaining weight, he was still jaundiced, she heard a slight heart murmur and he had pale stools. After our appointment, she later called to tell us we were being admitted to Seattle Children’s to expediate tests.
It was a long week of so many blood draws that I lost count. We heard diagnoses like Biliary Atresia, Alpha 1 Antitrypsin and various other rarer disorders. Finally, we heard the potential diagnosis that would dominate Finley’s life: Alagille Syndrome. We had to wait 11 weeks for an official diagnosis, and it was the hardest 11 weeks of my life. When we finally got the results, we began to plan his complicated medical care.
Finley’s Alagille Syndrome primarily affects his liver though he does have some heart involvement, pulmonary stenosis. Alagille was caused by a new mutation in the JAG1 protein. He currently is on various medications that help, like Ursodiol, Vitamin D, and Hydroxyzine for the dreaded itch. The itch honestly has been the biggest impact on our lives. Seeing your child not sleep and itch constantly has left us feeling helpless and exhausted. Thankfully we both have jobs that are flexible with Finley’s crazy medical schedule as we regularly meet with our Pediatrician, GI Specialist, Dietician, Genetic Counselor, and Cardiologist.
To those that are new to the AGLS community I say welcome. I know it is not a group you planned or wanted to belong to, but you will not find a better support system. It’s also ok if you are not ready to be involved as those first few months are incredibly difficult. You have learned that your child is not healthy. Your child will have a harder life than others. Your child is not safe. It’s a hard thing to come to terms with but when you are ready, we are here to welcome you with open arms.
My hope for the future is to continue to advocate for better treatments for those with this condition. To make these treatments free and available to all Alagille warriors across the world. I hope one day there will be a cure but until then, I will fight for a better life for my child.