From the moment you hear that your child is being referred to a specialist, specifically a neurosurgeon, fear comes over you. The last thing you want as a parent is to see your child go through surgery or be in pain...and you naturally want to protect them from that...until your realize you can't. This birth defect is not something that you can bypass....surgery isn't an option for the majority cases of Craniosynostosis. Then once you finally accept your child has to have surgery then you have the anticipation of waiting for surgery day...even on that day I battled a mix of emotions. I just wanted to pick her up and leave..I didn't want her to have the surgery. I think that was the hardest part for me...accepting that this had to happen and I had to trust complete strangers with my child. After you get through the surgery and recovery you then live with that fear of more problems coming up. In our situation our daughter had endoscopic surgery for left coronal and now is in helmet therapy. I constantly inspect her head and examine her physical features fearing the worst...that another suture has fused or that she will need another surgery...it consumes me at times.
|Alice's skull (left) before surgery compared to a normal skull of a newborn|
Last week Alice had a helmet adjustment appointment. I already had some concerns from two weeks prior but was hoping I would be relieved of my worries this time...but I wasn't . Alice's head has not had hardly any growth in 4 weeks time...which can sometimes be a big concern. I immediately went into panic mode thinking the worst. She could possibly need more surgery, my worst fear. I emailed Dr Magge as soon as I could and expressed my concerns. I also vented to a couple friends...one who had been through the same surgery with her son, and one who had been supportive through Alice's journey. They both tried to calm me down and were very sweet and reassuring. One friend said "Remember you have done everything you can do right now. Gosh forbid Cheryl she has to have a larger operation at some point (prayerfully that won't happen but if it were needed) you also have to remember you have helped delay it by having the less invasive one months ago. Had you waited till she was a year old to do the big surgery we can only just imagine how it would have effected her sweet face and possibly motor or cognitive abilities. Keep the faith, pray and ask God repeatedly to take away any fear that is creeping in" Her words definitely helped me realize that I have done everything I can for her...I fought hard for the less invasive endoscopic surgery and even traveled out of town so that she could have that surgery. I have no regrets on my decision for endoscopic surgery for my child. I feel like it "stopped Cranio in it's tracks" as my other friend said...and helped her in the long run, more surgery or not. I have done everything in my power to help her...it is out of my hands and in God's hands now.
|Alice, one year ago|
Alice's first birthday is tomorrow...it blows my mind that it has been a year. When I reflect back on just how much she has been through in her short year of life, it makes me emotional. What a strong girl I have. When I brought her home from the hospital she was somewhat fussy at first...and for the first several weeks. For some reason I started singing her the "Don't Worry, Be Happy" song (from the late 80's, remember?) It seemed to soothe her so I continued to sing it to her over and over for the next few months. So, I am going to take my own advice and try not to worry and to be happy. Easier said than done...i think I will always worry about her...but hopefully we will get some reassurance when we followup with her neurosurgeon in a month. Please keep Alice in your prayers. Happy 1st Birthday to our sweet Alice!!!
|Happy 1st Birthday sweet girl|