We are so excited to warmly welcome Super Alice to our TinySuperheroes squad! Super Alice is an incredible two-year-old who brings with her biliary atresia as her super power! Her mama Bonnie is also an amazing blogger and shares a’many tales about Super Alice and their journey over on her blog.
Super Alice’s mom Bonnie had a normal pregnancy and, albeit lengthy at 2 days, an uneventful delivery. However, when Alice was just 3 days old, her parents took her to the hospital to be seen because she appeared to have a touch of jaundice. Alice’s mom writes, “It was terrifying not knowing what was causing Alice’s jaundice when we first took her to the hospital to be assessed. She underwent a battery of testing at that time, including bloodwork, urine samples, ultrasounds, x-rays, and a spinal tap. It was excruciating to watch her go through these types of tests at only a few days old. Her surgery and recovery was also terrifying for us, as we were unaware of what the outcome would be, and what the future would look for her long-term.” Super Alice went through a lot of tests and it was determined through a surgical procedure that she was born with Biliary Atresia, an incurable liver disease that affects 1 in 18,000 babies. Bonnie did an amazing job documenting this diagnosis over on her blog, which you can read all about if you click here.
Super Alice has had one major surgery in her short 2 years of life; she underwent the Kasai surgery when she was a little over 2 months old — 68 days old to be exact. Without this procedure she would not survive past her second birthday. The Kasai procedure is only 30% effective — for the 70% in which the surgery does not work the baby will require a liver transplant before they turn one. This surgery lasted 7 hours, but thankfully it was uncomplicated and went very well and Super Alice only spent 5 days recovering in the hospital before she went home. However, even with the success of her surgery, Super Alice is monitored by her GI doctor every 3 months to keep a close eye on her condition. Alice also has routine bloodwork and ultrasounds done to monitor the progress of her liver disease. Super Alice will require a liver transplant in her lifetime, most likely before she is 18.
Super Alice has to be super careful around germs — she experiences something called transient neutropenia, which lowers her white blood cell count and causes her to be more susceptible to illnesses. Since Super Alice’s superpower deals directly with her liver, anytime she gets sick or a fever she must be assessed by her liver team to make sure that her liver isn’t affected, because if it is and left untreated it could become life-threatening. Super Alice takes daily medication and prophylactic antibiotics to try to help keep an infection away. Due to her liver disease, Super Alice’s spleen and liver (and other surrounding organs) are enlarged, which causes her belly to be distended and round. Since she is still a toddler at two years old and has her little baby belly, this isn’t really something that is noticeable. However, as she grows, this will likely become more noticeable and something Alice will need support to cope with.
A few fun things about Super Alice: she sure loves diggers! She is very much into construction equipment, dump trucks, excavators, cement mixers, and everything else construction related! Super Alice very much loves to read books, so much so that she’d prefer to do that more than anything else! — A digger book will have her entertained for hours! She loves collecting rocks and playing at the park, and loves Bruno Mars, especially Uptown Funk and 24K Magic! Super Alice is very much a chatterbox…she started talking quite young and hasn’t stopped since! She is a very funny little girl and loves telling jokes and making others laugh. Super Alice very much loves her two stuffies Lamby-Lou and Bear-Bear and snuggling and cuddling with her mom and dad. One of her favorite things is to have her mom sing her a lullaby to help her calm down and feel relaxed.
So what’s up next for Super Alice? Well, everything! Super Alice has been beating the odds since the day she was born. Her Kasai surgery was greatly successful, which is only the case for 30% of children who undergo it. Alice is also gaining weight and growing appropriately for her age, which is something BA children often struggle with. She does not require a G-tube for supplementary nutrition which is often the case for BA kids as well. She also did not require a liver transplant before she turned one. Alice is kicking butt and using her superpower to not let anything stand in her way!
Super Alice truly is a fighter. Her mom says, “She is so strong and so resilient, and is constantly amazing us with her strength at such a young age. It is difficult for some people to understand how serious her health challenges are, because she appears just like any other kid! She loves going to daycare and playing with her friends, and is such an amazing little person. She is so kind, generous and empathetic.” Although Super Alice will need a liver transplant at some point in her life, she’s not letting that stand in her way of tackling and accomplishing anything that is put in front of her! She is an incredible young lady and we are so thrilled that she is part of our TinySuperheroes squad!