CFM Study @ Seattle Children's

At Ethan's January Craniofacial appointment, we were asked if we wanted to particpate in a new Craniofacial study to try and find out more about Craniofacial Microsomia. We agreed to because we would like to help out other families who may be dealing with this disorder in the future. The study is being conducted by Seattle Children's Hospital's Craniofacial Clinic, but the hope is that it would expand to other hospitals around the country. We visited the research clinic at the main campus. Jonathan went to the playroom for a while, but kids are only allowed to stay for 2 hours at a time and we were there for longer that we had to pick him up. I turned in the paperwork that we had gotten earlier in email and then we finished up any paperwork that was needed. Then we went to the photographer who was the same guy who takes pictures for Craniofacial. He had gotten into a bicycle accident the day of Ethan's clinic visit and was still in a wheel chair when we saw him. While Bob took his pictures, I went with the lady who was conducting and organizing the study, Linda Peters.

Ethan would also get his pictures taken after Bob and he apparently did ok until they put a hat on him so they could get a good picture of just his head and face. We got a copy of this picture, but Ethan is crying in it, so i'm not sure how helpful it will turn out to be. After the pictures were done for them, they would return to the clinic and give spit samples. Ethan's cheeks would be swabbed and Bob had to spit into a container up to a certain line.

In the other room, I had to give a spit sample too. I don't usually spit, so it took me a long time to get to the line. I did it while I answered a long series of questions regarding my overall health and things the occurred from 3 months before getting pregnant to after Ethan was born. Some of the questions I couldn't remember very well, but I did my best and was honest if I couldn't remember for sure the answer to the question.

The week following this appointment, I would get a call and have to answer another series of questions that would take about an hour.

After I was done with the questions in clinic, it was my turn to take pictures. I had to make different faces, which is what Bob had to do too. Ethan had to get more indepth pictures taken for the study.

Waiting to get started

Bob making a face for the camera

Jonathan waiting to go to the playroom

Ethan and Linda Peters

We were at Children's for a few hours and then we were given gift cards as a thank you. Of course, we would have done the study anyways. We are so glad to be able to participate in a study that will hopefully help researchers learn more about CFM. This study probably won't help Ethan at all, but if we can help future generations to learn more about the causes of this disorder, we are happy. It was an honor to be able to be asked and participate in this study. We are always willing to help out in any way that we can.

 

-Dina