Kaitlyn's story

By Deanna Jackson

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Kaitlyn was born in July 2003 at a local Seattle hospital. She is my fourth child. We knew something was wrong soon after she was born. The little knit hats they put on the newborns would not stay on her head. We were told that Kaitlyn's oddly-shaped head was probably because she was breach, which didn't make sense because she was born by cesarean section. The doctors kept saying that her head would eventually round out and look normal, but it didn't. Day after day, her little head continued to grow more and more out of shape, looking basically like a football. After numerous doctor visits, a CT scan, and an MRI we were finally referred to Seattle Children's Hospital.

Kaitlyn was diagnosed with Sagittal Craniosynostosis at 2 ½ months of age. She had surgery two weeks later. It was her only option as her condition was so severe. After she got out of surgery, there was a problem providing her with enough pain medication, but they eventually got it under control. She was in NICU for the first night and a regular room for two more before they released her. They were the most nerve-wracking and stressful days of my life.

As soon as the swelling had gone down though, we could tell that her head now looked normal. The scar, zigzag up each side of her head above her ears and straight across the top, was a bit disturbing, but it was definitely worth it. She looked better every day, and didn't seem to be in pain after the first day. The researchers at Children's Hospital came to us soon after her diagnosis to see if we would join a research study for her condition. We agreed immediately, honored that they wanted to include Kaitlyn in the study. Through the research study, they took some DNA from her and did genetic testing. We just recently found out through that testing that she has Saethre-Chotzen syndrome. A mutated gene is what caused her condition. I was told that she has a 50 percent chance of passing this down to her children.

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We are not sure yet if it was passed on from her father or myself; they are doing more testing right now to find out. If it was passed down from one of us then my other children will have to be tested for this as well.

Kaitlyn will have to undergo another surgery when she's five to close up a spot in the back of her head which hasn't filled in with bone yet, and they will also reduce the width of the scar. She has been slightly delayed in her speech and motor skills, but it doesn't slow her down a bit. She is the joy of my life.

I can't thank Children's Hospital and Dr. Richard Ellenbogen enough for the help they gave Kaitlyn. Children's Hospital is the most awesome place that I know. The depth of caring by the doctors and nurses is amazing. The way they are so focused on the children's needs, and the research that they do to try and cure childhood diseases is phenomenal. And the fact that they are right here in our backyard is the greatest gift of all.

I met many people during Kaitlyn's stay and follow up visits to the hospital. Many of them travelled far from home to get treatment for their children. But even when the families have to travel from far away, Children's Hospital is right there, helping them with housing, and doing everything they can to make the kids and their families feel as comfortable as possible. I thank God everyday for Children's Hospital and for the treatment that my daughter received there. Now, she can grow up looking as beautiful on the outside as she is on the inside, and not have to be ridiculed or teased for looking different.