I am taking another break from all things vaccine injury, mito and autism this week. I should be so lucky to walk away from my family and a household full of responsibility twice in two weeks! Even though I just returned from a wonderful weekend away to the Generation Rescue AutismOne conference, I felt the need to leave home again. I'm not running away from my over-stressed life; I'm running toward a glimmer of hope.
Hope wasn't my first thought several weeks ago when I wrote a story about my best friend and her newly adopted daughter. (HERE). Her baby was given a very grim diagnosis of severe congenital heart defects and was in congestive heart failure at seven days old. The baby was admitted to the ER and within 36 hours of being admitted, the baby was life flighted from the local children's hospital to a more specialized medical facility. Surgery was necessary as was getting her seen by a well-known and respected pediatric cardiothoracic surgeon. If the baby were to live, she needed intensive medical treatment quickly.
As I imagined the many wires, blood draws, heart monitoring tests and invasive exams being ordered, hope was the last thing on my mind. Being several hundred miles away didn't lessen the anxiety I felt about this unexpected situation. All I wanted to do was be with my friend to carry her through this. It was nearly impossible to plan a trip because of my very busy schedule and my family’s needs. Plus, while the baby was in the pediatric intensive care unit (PICU) visitors were limited to shorter lengths of stay due to the constant monitoring and testing being done. Though I couldn't be in the room to hold my friend's hand, I could help by being the point of contact for immediate family and close friends, reporting on the baby's tests and future treatment options. Intellectually I know I was a help by keeping everyone updated, but emotionally I still felt a little helpless. I was so far away and wanted desperately to be there to hold my friend up.
For weeks, more cardiac problems, delays, and an inconvenient blood infection drew out the scheduling of the surgery. The baby had now logged a lengthy hospital stay with no discharge date in sight. I was full of grief and despair thinking about the baby as she waited for her life-saving heart surgery. I'm normally a positive person, but this child was up against some very serious odds, odds which just brought me down. Despite my own reservations, though, my friend stayed spiritually strong in her faith. She believes so completely in God and His will for her life and that of her baby, and she has always taught me to stay faithful throughout my own personal struggles. But what a test of faith this was!
Knowing how worried my friend was for her new child, I insisted that she call me at any time of the day or night. I'll never forget the late night phone call three weeks into taking up residence at the PICU.
"It's not good....the baby’s heart is just so messed up...the doctor doesn't know if he can do the repair...there are so many problems...the left heart is so small but the right heart is in such bad shape....they don't know how to proceed...." and the crying. Oh, the crying. Of course I've heard my friend cry before, but I've usually been able to comfort her quickly. I couldn't do anything over the phone at 11pm at night besides say, "I'm praying. You know hundreds of people are praying for you guys too. That baby is a fighter, you said so yourself. She's going to be okay...."
Fast forward to week four in the PICU. Several days’ worth of antibiotics knocked the blood infection out of the baby's system. And as only God knew would happen, that extra week of waiting for her blood cultures to be clear gave the baby that much more time to grow in size and strength. A pre-op echocardiogram showed that her right heart had improved as well, something none of us, including the surgeon, could have foreseen. Little girl was finally ready for her life-saving surgery.
And save her life it did! The baby's surgery went better than expected. I am happy to report that I was finally able to visit my best friend, to be with her and her sweet baby in person, to hold them both in my arms and to be the help that I was desperate to be for all those long weeks.
Though the baby's surgery was a success, there are likely more surgeries in her future. But with her track record and feisty, fighting spirit, we all have high hopes for her. Her second chance at life has filled me with a renewed hope for my son's future. My friend has said that there is always hope as long as there is a breath in your body. Well, I'm still breathing and hoping and fighting for my son's second chance at life.
Cathy Jameson is a Contributing Editor for Age of Autism.