sarahob
11-13-2007, 02:53 PM
I finally have time to share Gavin's story in some more detail.
Gavin was born in October 2006. He was a term baby and born with no complications. When Gavin was about 4 or 5 months we started noticing that his head looked a little "egg-shaped" and he developed an indent in the top of his head. Looking back at earlier photos and knowing what we know now, the cranio was obvious long before we noticed anything.
http://i229.photobucket.com/albums/ee12/sarahob19/IMG_6362.jpg
At his 6 month appointment with our family doc, we mentioned the indent. He told us that it was probably nothing but referred us to a pediatrician as a precaution. We saw the pediatrician when Gavin was about 7 months and she immediately diagnosed him with saggital craniosynostosis. She said that it was "cosmetic" and she could refer us to a specialist if we wanted. I went into the appointment expecting her to say that Gavin was fine - my husband has a long head and I just thought he took after him. So when I heard the news "cosmetic" I just thought that was the end of it. After some research we decided to go ahead and see a specialist.
We saw the plastic surgeon at Sick Kids Hospital in Toronto, Canada when Gavin was about 9 months old. They had no concerns about Gavin developmentally nor did they believe that there was any risk of intercranial pressure. We were told that his cranio was "cosmetic" and it was our decision as to whether to go ahead with the surgery. We had a few more appointments and learned more about the surgery and the associated risks.
We agonized for weeks over the decision. I felt it was an impossible no-win situation - either we put him through a potentially risky surgery or we set him up to potentially have a difficult life of teasing if we opted against surgery. These weeks were so hard - all the what-ifs kept going through my head and I really had no idea what we were going to do. His case was considered "mild-to-moderate" and no one could tell me how much more pronounced his head shape may become.
http://i229.photobucket.com/albums/ee12/sarahob19/gav_story1.jpg
We opted for the surgery and it was booked for 3 weeks later. There were several reasons we decided to opt for surgery:
Although it wasn's the right decision for us (my husband and I), we thought it was the right decision for Gavin. We had to put ourselves in his shoes and think about what he would want. We pictured him saying to us at age 10 or 12 - "you mean I could have had this fixed." We felt that for his pyschosocial health, it was the best decision.
Gavin was only a year old and his brain still had a lot of growing to do. Although nobody could predict what his head-shape would become we felt that the best prediction would be a much more pronounced head shape.
I knew that if we didn't opt for surgery I would always second guess myself.
We had a lot of faith and confidence in the surgical team at our hospital.
Gavin's surgery was October 24, 2007 - 5 days before his first birthday. The weeks preceding the surgery were the hardest days of my life and I second-guessed our decision every day. The surgery day was so long and very emotional. Passing him over to the nurse was so hard. We waited for 6 hours before we heard anything and the surgeon came out to speak to us after 7 1/2 hours of waiting. The surgery went great. There were no tears in the dura and although he had a blood transfusion, the blood loss was less than expected.
We saw Gavin about an hour later. He had lots of tubes and an oxygen tent over his face. To be honest, I really didn't look at his new head shape - I was just so relieved that the surgery was over and he was okay. He spent the night in Crital Care and was moved to his floor the following morning. The days that followed had their challenges. Once the swelling kicked in he looked nothing like my child - I was prepared for the swelling but not how different he would look. Gavin opened his eyes 3 days post-op and we went home the next day.
http://i229.photobucket.com/albums/ee12/sarahob19/gav_story2.jpg
We are now 3 weeks post-op and recovery continues to go well. Our journey continues as Gavin will be wearing a helmet for a few months to further mold the shape of his head.
http://i229.photobucket.com/albums/ee12/sarahob19/IMG_7665.jpghttp://i229.photobucket.com/albums/ee12/sarahob19/IMG_7667.jpg
I am forever thankful for the support I received through CranioKids. It was my lifeline throughout this whole process. I could share exactly how I was feeling and know that I wasn't alone - what I was feeling and all my fears were completely normal.
Gavin was born in October 2006. He was a term baby and born with no complications. When Gavin was about 4 or 5 months we started noticing that his head looked a little "egg-shaped" and he developed an indent in the top of his head. Looking back at earlier photos and knowing what we know now, the cranio was obvious long before we noticed anything.
http://i229.photobucket.com/albums/ee12/sarahob19/IMG_6362.jpg
At his 6 month appointment with our family doc, we mentioned the indent. He told us that it was probably nothing but referred us to a pediatrician as a precaution. We saw the pediatrician when Gavin was about 7 months and she immediately diagnosed him with saggital craniosynostosis. She said that it was "cosmetic" and she could refer us to a specialist if we wanted. I went into the appointment expecting her to say that Gavin was fine - my husband has a long head and I just thought he took after him. So when I heard the news "cosmetic" I just thought that was the end of it. After some research we decided to go ahead and see a specialist.
We saw the plastic surgeon at Sick Kids Hospital in Toronto, Canada when Gavin was about 9 months old. They had no concerns about Gavin developmentally nor did they believe that there was any risk of intercranial pressure. We were told that his cranio was "cosmetic" and it was our decision as to whether to go ahead with the surgery. We had a few more appointments and learned more about the surgery and the associated risks.
We agonized for weeks over the decision. I felt it was an impossible no-win situation - either we put him through a potentially risky surgery or we set him up to potentially have a difficult life of teasing if we opted against surgery. These weeks were so hard - all the what-ifs kept going through my head and I really had no idea what we were going to do. His case was considered "mild-to-moderate" and no one could tell me how much more pronounced his head shape may become.
http://i229.photobucket.com/albums/ee12/sarahob19/gav_story1.jpg
We opted for the surgery and it was booked for 3 weeks later. There were several reasons we decided to opt for surgery:
Although it wasn's the right decision for us (my husband and I), we thought it was the right decision for Gavin. We had to put ourselves in his shoes and think about what he would want. We pictured him saying to us at age 10 or 12 - "you mean I could have had this fixed." We felt that for his pyschosocial health, it was the best decision.
Gavin was only a year old and his brain still had a lot of growing to do. Although nobody could predict what his head-shape would become we felt that the best prediction would be a much more pronounced head shape.
I knew that if we didn't opt for surgery I would always second guess myself.
We had a lot of faith and confidence in the surgical team at our hospital.
Gavin's surgery was October 24, 2007 - 5 days before his first birthday. The weeks preceding the surgery were the hardest days of my life and I second-guessed our decision every day. The surgery day was so long and very emotional. Passing him over to the nurse was so hard. We waited for 6 hours before we heard anything and the surgeon came out to speak to us after 7 1/2 hours of waiting. The surgery went great. There were no tears in the dura and although he had a blood transfusion, the blood loss was less than expected.
We saw Gavin about an hour later. He had lots of tubes and an oxygen tent over his face. To be honest, I really didn't look at his new head shape - I was just so relieved that the surgery was over and he was okay. He spent the night in Crital Care and was moved to his floor the following morning. The days that followed had their challenges. Once the swelling kicked in he looked nothing like my child - I was prepared for the swelling but not how different he would look. Gavin opened his eyes 3 days post-op and we went home the next day.
http://i229.photobucket.com/albums/ee12/sarahob19/gav_story2.jpg
We are now 3 weeks post-op and recovery continues to go well. Our journey continues as Gavin will be wearing a helmet for a few months to further mold the shape of his head.
http://i229.photobucket.com/albums/ee12/sarahob19/IMG_7665.jpghttp://i229.photobucket.com/albums/ee12/sarahob19/IMG_7667.jpg
I am forever thankful for the support I received through CranioKids. It was my lifeline throughout this whole process. I could share exactly how I was feeling and know that I wasn't alone - what I was feeling and all my fears were completely normal.