Every 1 in 2,000 births a baby is born with Craniosynostosis. On November 30th, 2011 at 3:51 pm, my daughter became that one. In the moment she was born I couldn’t have even imagined the road our lives would take over the next several months.
It became pretty clear, within the first 2 months of this life, that something didn’t look right. I kept looking at her forehead, examining her head shape, and wondering why things looked the way they did. Her first pediatrician exam at 2 weeks old, first thing the pediatrician said was ‘she has a big head and its unproportioned with her body. Her soft spot is alot further back and size of the tip of my ring finger. When I got home I would google everything and when I typed in “babies head large, forehead bulging” one of the first things that popped up was Craniosynostosis. I had never even heard the word before and I assure you I couldn’t even come close to pronouncing it. I clicked on the link and read the signs of it and my heart sank. I knew right there, in that moment, my daughter had that condition. We took her back and forth to the pediatrician all the time. By the 4th month the pediatrician could no longer feel her soft spot. She said ” It’s time that you get her downtown to a neurosurgeon. So I called and called until I finally got an appointment downtown at Texas Children’s Hospital Pediatric Neurosugery with Dr. Bollo.
April 17, 2012 was our first appointment with Dr. Bollo. When Dr. Bollo looked over at my daughter and immediately said “She definately has Saggital Craniosynostosis” it was like the air was sucked out of my lungs. I had been bracing myself for months to hear those words and in my heart, I knew that’s what it was, but actually hearing those words – that’s a moment in my life I wouldn’t wish upon anyone. He booked her surgery for 2 weeks later.
In the days and weeks leading up to Holley’s surgery I constantly kissed her sweet head and I would cry. I cried all the time. She was perfect to me, Craniosynostosis or not, I loved her no matter what. I knew the surgery was critical to her well-being and it needed to be done to ensure she would grow normally and live the life she was supposed to. But every time I kissed her sweet head, I prayed to take this condition away from her. Give it to me. Make ME have the surgery. Not her. I would’ve done anything in the world to fix this for her without her having to endure one ounce of pain.
May 1, 2012 a morning that I don’t ever want to have to go through ever again and will never forget. Having to hand over my 5 month old baby girl for the 3-5 hour surgery. I love my kids the same but each of them also hold a very special place in my heart. There are no words to describe the love I have for my kids. Holley is my hero. What she has gone through in her short life, she has done with a smile. Everyone I encountered in the time before her surgery would tell me how resilient kids are and how fast she would bounce back. I thought they were just being polite, saying comforting things to a person who they could tell was clearly a wreck.
They weren’t lying.
That little girl kicked some serious Craniosynostosis butt.
I am not happy my daughter has this condition and I’ll spend forever wondering “Why her?” But one thing I will say is, while I am not happy, I am PROUD.
I ask you, or anyone else who hears her story and about the condition to take the time this month to spread the word about Craniosynostosis and early detection. If undiagnosed – my daughter would have had developmental delays due to pressure on her brain /skull. My daughter is a warrior and she doesn’t even know it yet. Some day I’ll share her story with her and I will tell her how she showed more bravery and courage than anyone I’ve ever met.
SHE is my HERO.