BusyBee
08-29-2008, 11:15 PM
My beautiful baby girl Abby has right coronal synostosis. This is our story so far....
About 4 weeks before she was due, we found out that our second daughter was breech. As she was a planned c-section the doctor wasn't too worried about this. He said that it was unusual to have two breech babies (first daughter was undiagnosed breech which resulted in emergency section) and that it was probably something to do with my anatomy!! This pregnancy had been much easier than my first but I often felt that the baby didn't have enough room as her movements tended to feel uncomfortable and painful.
Anyway, the c-section went ahead and when she was born we were so shocked at how small she was and how much jet black hair she had. She was gorgeous! We noticed right away that the left hand side of her face was swollen and droopy. When the pediatrician came round he said it was nothing to worry about and that she probably had her arm or leg smooshed into her face before she was born. He assured us that this would even out in the next few days. We accepted this without question as we had no reason not to.
The next few weeks were hectic as we had my parents staying from the UK and all sorts of visitors and well wishers. It was tiring but great to show off our new addition. During this time the left hand side of Abby's face started to look less swollen and droopy and she appeared to be evening out. At one point my husband did say that he wasn't sure which side of her face was the 'normal' side as something still seemed a bit off, but still we didn't think it was anything to worry about.
When Abby was about 5 weeks old I realised that I kept hearing my elder daughter tell her that she had one eye bigger than the other. We already knew this but it seemed strange that a child would keep saying it. Abby also had a blocked tear duct in her right eye so not only was it bigger but it was often weepy and swollen. All of a sudden I truly LOOKED at her. I realised that her eye's were VERY misaligned and her forehead didn't look right. Then I started looking harder and realised that her ears were also misaligned. It was a Friday night and I started to look up misshapen heads on the internet and that's when I went into panic mode.
By Monday morning I was hysterical. My friend had to come and collect Anna as I couldn't cope and was in constant tears. I called my doctor but felt stupid saying to the receptionist that I wanted to see him because my daughter had a funny shaped head. I had to wait until the Friday to see him because of that stupid feeling!! All week (in between total breakdowns) I looked up about babies heads on the internet and although deep down I knew that she had cranio I desperately hoped it would be positional plagiocephaly and we could just have a helmet to make it better. I even imagined how she would look in a helmet and how I would decorate it! My doctor listened to my fears and gave me an instant referral to Children's and we had an appointment within a week.
Before the appointment I called Dean Clinic who specialise in helmets and they agreed to see Abby straight away. We took her and saw a wonderful lady who took one look at Abby and told us that she had Unicoronal Synostosis. She was so kind and although I was devastated to hear it aloud, I somehow held it together until we got to the car. I have to say having gone there first made it much easier for me to talk to the Plastic Surgeon at Children's because I had a couple of days to come to terms with it and also to get some questions down on paper. The Plastic Surgeon confirmed the diagnosis and was able to put our minds at ease about Abby's outcome. He was so nice and even though he kept being paged, he stayed with us without making us feel rushed and he answered all of our questions without making us feel that we were holding him up. I felt very comfortable with him being the person to operate on Abby.
He referred us to a Neurosurgeon who we have now seen. He was also very confident about Abby's outcome after surgery and was quick to reassure us that they had done many of these surgeries together. I have to say though, that the Neurosurgeon was a bit less hesitant about telling us all the 'what ifs' but I suppose you have to know the worst case scenario to be prepared!
After this visit I started looking up Cranio on the internet again and came across Allycat's caring bridge page. I sent her an email and she told me about Cranio Kids. I had already found this website but after talking with Allison I finally decided to join and the comfort I am finding from everyone on here is amazing. It helps me so much to realise that we are not the only ones dealing with this and whilst I wish that no other children had to endure the cranio nightmare, I am glad to have found you all.
We have now been given a surgery date in November and Abby will have a CT scan in October. We are trying very hard to enjoy every day with our girls before November is upon us but I do find it more difficult sometimes when I look at Abby and see more changes in her head shape. I know I have to be strong though for both of my girls and I know that we will get through this.
Thanks for reading this if you got this far. I am so happy to be able to share our story and I hope that by doing this we can help someone else out there who might be looking up 'misshapen heads' and beginning their cranio journey!
About 4 weeks before she was due, we found out that our second daughter was breech. As she was a planned c-section the doctor wasn't too worried about this. He said that it was unusual to have two breech babies (first daughter was undiagnosed breech which resulted in emergency section) and that it was probably something to do with my anatomy!! This pregnancy had been much easier than my first but I often felt that the baby didn't have enough room as her movements tended to feel uncomfortable and painful.
Anyway, the c-section went ahead and when she was born we were so shocked at how small she was and how much jet black hair she had. She was gorgeous! We noticed right away that the left hand side of her face was swollen and droopy. When the pediatrician came round he said it was nothing to worry about and that she probably had her arm or leg smooshed into her face before she was born. He assured us that this would even out in the next few days. We accepted this without question as we had no reason not to.
The next few weeks were hectic as we had my parents staying from the UK and all sorts of visitors and well wishers. It was tiring but great to show off our new addition. During this time the left hand side of Abby's face started to look less swollen and droopy and she appeared to be evening out. At one point my husband did say that he wasn't sure which side of her face was the 'normal' side as something still seemed a bit off, but still we didn't think it was anything to worry about.
When Abby was about 5 weeks old I realised that I kept hearing my elder daughter tell her that she had one eye bigger than the other. We already knew this but it seemed strange that a child would keep saying it. Abby also had a blocked tear duct in her right eye so not only was it bigger but it was often weepy and swollen. All of a sudden I truly LOOKED at her. I realised that her eye's were VERY misaligned and her forehead didn't look right. Then I started looking harder and realised that her ears were also misaligned. It was a Friday night and I started to look up misshapen heads on the internet and that's when I went into panic mode.
By Monday morning I was hysterical. My friend had to come and collect Anna as I couldn't cope and was in constant tears. I called my doctor but felt stupid saying to the receptionist that I wanted to see him because my daughter had a funny shaped head. I had to wait until the Friday to see him because of that stupid feeling!! All week (in between total breakdowns) I looked up about babies heads on the internet and although deep down I knew that she had cranio I desperately hoped it would be positional plagiocephaly and we could just have a helmet to make it better. I even imagined how she would look in a helmet and how I would decorate it! My doctor listened to my fears and gave me an instant referral to Children's and we had an appointment within a week.
Before the appointment I called Dean Clinic who specialise in helmets and they agreed to see Abby straight away. We took her and saw a wonderful lady who took one look at Abby and told us that she had Unicoronal Synostosis. She was so kind and although I was devastated to hear it aloud, I somehow held it together until we got to the car. I have to say having gone there first made it much easier for me to talk to the Plastic Surgeon at Children's because I had a couple of days to come to terms with it and also to get some questions down on paper. The Plastic Surgeon confirmed the diagnosis and was able to put our minds at ease about Abby's outcome. He was so nice and even though he kept being paged, he stayed with us without making us feel rushed and he answered all of our questions without making us feel that we were holding him up. I felt very comfortable with him being the person to operate on Abby.
He referred us to a Neurosurgeon who we have now seen. He was also very confident about Abby's outcome after surgery and was quick to reassure us that they had done many of these surgeries together. I have to say though, that the Neurosurgeon was a bit less hesitant about telling us all the 'what ifs' but I suppose you have to know the worst case scenario to be prepared!
After this visit I started looking up Cranio on the internet again and came across Allycat's caring bridge page. I sent her an email and she told me about Cranio Kids. I had already found this website but after talking with Allison I finally decided to join and the comfort I am finding from everyone on here is amazing. It helps me so much to realise that we are not the only ones dealing with this and whilst I wish that no other children had to endure the cranio nightmare, I am glad to have found you all.
We have now been given a surgery date in November and Abby will have a CT scan in October. We are trying very hard to enjoy every day with our girls before November is upon us but I do find it more difficult sometimes when I look at Abby and see more changes in her head shape. I know I have to be strong though for both of my girls and I know that we will get through this.
Thanks for reading this if you got this far. I am so happy to be able to share our story and I hope that by doing this we can help someone else out there who might be looking up 'misshapen heads' and beginning their cranio journey!