When you see two pink lines on a pregnancy test, so many emotions run through your body of joy and excitement! The planning and shopping begins and you get excited over booties and pacifiers. The thought of your baby having a birth defect is not on the top of your list. Birth Defects?? No, not going to happen to my family. That only happens to other people. People that didn’t take care of their bodies while pregnant. Well..that’s how I felt anyway. My son Brentley was born in June 2010 and we noticed pretty quickly his head was a little lopsided. Well babies heads always look very strange after being born so that’s what the doctors told us. But as time went on, it didn’t get better.
My mom kept telling me to ask the pediatrician. I was in complete denial that something could be wrong with my precious child. At his doctor appointments I would nonchalantly just mention his head to the doctor. He too shrugged it off as nothing was wrong, which made me feel better. Again, a birth defect was not going to happen to MY baby! But his head got worse looking. I would take pictures of him and look at them through the LED screen and notice how bad his head looked and I would delete it. I was in complete denial something was wrong. At his 4 month appointment we saw a nurse practitioner who looked at his head and said that he could possibly have “CRANIOSYNOSTOSIS”. I freaked out! I did what most mothers should never do…Google.
I freaked out more. After many doctor appointments with specialists and CT scans my son was diagnosed with a very rare type of craniosynostosis called frontosphenoidal. I was heartbroken. I kept trying to think of what I could’ve possibly done while pregnant to cause this to my innocent child. The fears of my son going through a massive skull surgery was more than I could bear! I was trying to prepare myself for the “what ifs”. I spent so much time dwelling on the surgery that I missed out on enjoying my baby. I would just hold him and cry for hours. I thought my world was coming to an end. I turned on Google again and looked for support. And I found a ton! Hundreds of loving mothers who had been in my shoes! One mother in Nebraska even sent my family a care package for our surgery! I felt so much better and supported. Well time dragged on slowly for his upcoming surgery but it came and went. My son had surgery 12/21/10 at just 6 months old.
I can tell you, handing over your child into a doctors arms and watching them take them away through double doors, is one of the hardest things a parent can endure. Your mind races taking in every second saying “Is this that last image I will ever see my child alive?” It’s an awful experience. Well he did AMAZING! As soon as we saw him out of surgery, he looked perfect! He looked the way God had originally made him….just with a rounder head.
Recovery was rough but in time it got better and he bounced back like nothing happened. The surgery was a life changing experience for me. I surprised myself at how strong I was. I only cried twice during the entire hospital stay. I was a changed person. I had a new outlook on life. I was so happy! I felt so blessed! My son was alive and he was perfect! I was determined to be there for other families going through this journey. I teamed up with another cranio mom in Seattle, Shelby Davidson, and we started a non profit called Cranio Care Bears (www.CranioCareBears.org) in March 2011.
We strive to bring comfort and love to strangers all over the world. I know how important that care package meant to me and my family before surgery and we want everyone to feel that love and support. Cranio Care Bears now sends 50-60 care packages every month all over the world! Craniosynostosis is not something I would wish on anyone’s child. But for me and my family, we are so blessed that God gave my son Brentley this condition.
It was treatable and it changed all of our lives for the better. My son is now a year and half post op and is doing better than anyone could expect. He shouldn’t need a second surgery but if that presents itself, we will not be scared and we will be strong.
The saying “You never know how strong you are until being strong is the only choice you have” is an understatement when your child faces a birth defect. My original ignorant thoughts of birth defects only happen to women who don’t take care of themselves were shattered. Now I believe birth defects happen for a reason and can be a blessing in disguise. The journey taught me to be strong, it brought my family together and has changed my life for the better.