The story of Bregan
Our son, Oakland was born healthy and perfect. He was diagnosed with jaundice a few days after birth but didn’t need phototherapy. We were in newborn baby heaven. His bilirubin peaked (or so we thought) and started to drop so we stopped checking his levels. At his 2 week appointment, we knew he was still jaundice but we didn’t know how bad. He was sent off for blood work and we were sent home while we waiting for those results. His pediatrician called and told us his bilirubin was 32 and he needed to be admitted to the PICU immediately. We frantically got everything together and made our way to the hospital. He was put under 5 banks of phototherapy lights and he couldn’t come out at all until the morning. I was still in my unaware bliss of knowing just how bad this could be. My other two babies were jaundice, I knew it was common, but I didn’t know anything else about it yet. Oakland responded really well to phototherapy and didn’t need a blood transfusion and was able to come out of his lights to eat in the morning. Doctors started running all sorts of tests to find our why his bilirubin got to 32. It would be several months and much more heartache before we finally got our answers. At almost 4 months old, several weeks of 24/7 phototherapy followed by better lights and 12 hours of phototherapy a day, another hospital stay, ultrasounds, a HIDA scan, and more blood work than anyone should ever have to have, we got our answer. Crigler-Najjar Syndrome. Our little one in a million fighter. Since Oakland’s diagnosis, he is doing extremely well. He’s very happy and has a golden hue to him and that’s how he got the nickname sunshine man. We’ve been able to manage his bilirubin with phototherapy and keep him safe and out of the hospital. We are very fortunate that the Lord protected Oakland from serious damage and even death. We know God is writing his story and that He has a perfect plan for our sunshine man. Life with Crigler-Najjar is tough sometimes but our faith is stronger because of it.