Max’s Story
Our experience at Seattle Children's began in December of 2006 when Max was diagnosed with biliary atresia. He was six months old. This is a rare condition in newborn infants in which the common bile duct between the liver and small intestine is blocked or absent. The only effective treatment is a liver transplant. Although this was such devastating news for us, Seattle Children's did an amazing job preparing my family and me for what was in store. They were just as concerned for me as they were for Max.
Max was listed for a transplant in January of 2007. He received his gift of life three months later, on April 4th. Life post-transplant involved a lot of balancing - medications, lab draws, liver biopsies, CT scans, ultrasounds, clinic visits, and many, many hospitalizations. One year later, Max was diagnosed with pneumocystis pneumonia. Because of his weakened immune system, he was particularly vulnerable to this infection -- however, we were in the best place possible for treatment. This was the most trying of all of our time spent at Seattle Children's. Many of these weeks were spent in the pediatric intensive care unit on a ventilator. We were in need of a miracle. We had such incredible care, an amazing team focused on Max, patience, prayers, and determination to bring my sweet boy home --- we made it.
Although the majority of Max’s first 2 years of life were spent at the hospital, we feel fortunate to have been at Seattle Children’s. When you're there for so long, the staff at the hospital becomes family. They know what you're going through and they are there with you during the most trying times of your life. They are there to hold your hand, give you a shoulder to cry on, laugh with you, share in your baby's firsts with you --- they truly go above and beyond.
During all of this, when I somewhat felt like my world was falling apart – Seattle Children's provided uncompensated care and took care of the financial hardship. We had great insurance, but there were costs exceeding what we could afford. You swallow your pride because you want your baby to receive nothing less than ultimate care. At Seattle Children's, they don’t worry about what coverage you have, and they don’t limit what they can do for you -- they give you hope and they care for your child. It’s priceless.
Max is just about to turn 5, he is all boy! He loves motorcycles, whales, Legos, cars, tractors, and dirt. He will start pre-k in the fall and he can hardly wait to pack a lunch to take to school. The smallest things are huge milestones for Max and me. There are days I can’t believe we made it this far. As days go by, I often have to remind myself that I wasn’t sure we'd make it. I feel such gratitude for the care we received at Seattle Children's and I am honored to be a part of such a phenomenal medical center. Thank you, certainly doesn’t feel like enough.
It’s now our turn to help families that need the help we needed. This is our third year participating in The Covey Run --- every bit anyone can do to help is a bit of hope for a family in need.
~ Mandi, Max’s Mother
