In the last months of our pregnancy with Max, the doctor noticed Max wasn't growing. We had multiple ultrasounds done, but none showed any problems. So two weeks to the due date, the doctor decided to induce labor in case the problem was in the womb. Max was born 5 lbs. 8 ounces, which is small for a full term baby, but he seemed so strong and healthy.
Being parents who have always had healthy babies we never believed anything was wrong. The next two days were perfect. Max ate like a champ. He passed all the normal baby screens, except the pediatrician heard a heart murmur when she listened to him. They told us there was probably nothing to worry about, but they wanted to do an echo-cardiogram before we were discharged ,just to be safe. Just as the results of the echo were coming back from the specialty hospital, we noticed what looked like bruising around Max's nose. We called the nurse in and she took him away. We were soon to get the news that would change our lives forever.
We were told Max had a serious heart defect called Tetralogy of Fallot and they had to rush him to UC Davis children's hospital. From the minute we watched them wheel our precious baby boy to the helicopter, to the day they transferred him to UCSF for his first open heart surgery at one week old, it seemed like a horrible dream. His first surgery seemed to go well. He was recovering. We were given the good news that he was allowed to try breast feeding for the first time. He ate great and then we continued to hold him. All at once his alarms started going off. The nurses asked us to step out and within seconds, doctors were pouring in to his room. Max had cardiac arrested. Luckily his surgeon was only a short distance from the hospital and was able to open him up in his room and work to save his life. He was then placed on life support. He stayed on the machines for three days and then was taken back in for another heart surgery.
By age five, Max had 7 heart surgeries, one diaphragm surgery, his tonsils removed, and too many catheter procedures to mention. He had his seventh surgery, when he was five, which was extremely risky, because his heart has grown into his chest due to all the scar tissue from having to be opened so many times. His amazing Cardiologist and Surgeon came together to perform a new type of hybrid surgery on Max that made him the first in California to have it done and so far it is working great. There is no clear answer to how many more surgeries Max will have, but we do know there are more in his future.
As parents who have sat in a waiting room for hours waiting to hear that our child is okay and sat by his side at his hospital bed watching him be so scared and in more pain then we could ever imagine, and feel so helpless and spending weeks and months hundreds of miles from home, we know first-hand not only the emotional, but the financial strain having a sick child can bring to the whole family. So our goal with Max's Miracles is to give these special children who endure so much a place where they can leave it all behind at least for the day, and to hopefully be able to take some of the burden off of the parents during the times their child is in the hospital.
Steve, Molly, & the Williams family