twinmom
08-29-2008, 03:42 AM
Here I will try to tell our whole story.
Aug. 29th, 2008
When Victoria and William was born, Victorias cranium was very much out of shape, at first they told us that it was due to the position in my uterus. But to be safe, they took some clinical photos of her, when she was only 1 day old and we got an appointment to the pediatrician one month later.
In February 2008 we went to the first appointment expecting to be told that Victoria was okay and there was nothing to be worried about. So it came as a shock to us, when the pediatrician said that she might need surgery and that her sutures might be prematurely fused. She wasn*t an expert though, so she referred us to Aarhus University hospital for further examinations.
Ultimo March 2008 we had our first consultation with the Neurosurgeon Leif Christensen. A very competent man! He looked at our daughter for less than 2 min. and gave the diagnosis "right coronal synostosis" He explained that she had to be operated when she was about 8-9 months old.
Ultimo June 2008 we went to pre-op consultation at the hospital. We were presented to alle the staff we will meet during the time we are admitted to the hospital. The explained the proceedure in details for us.
CT and MR scans will take place on the day of surgery, so they do not have to put her in anesthesia so many times. They do not use helmets here in DK so unfortunately her back head will alway be crooked.
Ultimo August 2008 we had a checkup, they checked if the eye nerve was okay (they said that this is they way they can check if the brainpressure is rising) So she is a healthy little girl, they were very pleased with her, the only downer was that the docter ( not the NS ) was sure that Victoria has multiple fuses, as the flatning has begun to appear over her left eye too.
Right now, I just wish we were on the other side. My thoughts are on the operation every day now, and I'm so scared, that she might be sick before surgery, so they will postpone it...
Sep. 8th, 2008
Today I have corresponded with the NS to clarify whether or not they can fix her back head. Here is the translated version:
"The operation, which Victoria is going to have is principly the same which you have described ( CVR and FOA).
The positional flatness and croockedness in the bag head is not something which can be fixed with an operation. There is a global agreement about this, that eventhough there might be some places where the try to fix it.
As far as I recall, Victoria is having a CT scan before the surgery, with this we can see how many closed sutures there is.
It is not possible to do a surgery in the back head in the same seance as we do the forehead. This is because she will be lying on her back for the operation. Should we operate her backhead, she will be positioned on the stomack."
Well much can be said about the NS, he is not good with parents, but his reputation here in DK is, that he is the absolut best in the country.
So I guess, we just have to live with the fact that she will always have a crooked backhead.
March 15th, 2009
Time passed by soo fast and sometimes you wonder what struck you :)
Victoria had her operation Oct 1st. and it went really well. Considering that it has probably been the most difficult thing in my life. And seeing you little baby after this kind of operation, that is never funny, It is scary!!!
On the other hand, it wasn't as scary as I had thought. Victoria was a little trooper. 3 days after the operation, we were home again, She was terrible swollen, and wanted to be with us the whole time, understandably. But after 7-10 days, when she could see again, she wanted to be on the floor, so she could play with her brother. After that time just passed, the scar healed so nicely that today it is almost invisible and if you don't know it is there, you cannot see it. Here in Denmark we do not have any post-op interviews with the docter (which I find really weird!) So May 5th, 2009 is the first time the neuro surgeon is going to see Victoria since he released us from the hospital. I must say that she has changed quite a lot, and much of the facial croockedness has gone. Her scull is still in an abnormal shape, and is probably not goint to change.
3 weeks ago we got the result of her genetesting, and it showed that she had Saethre-Chotzen syndrome! I have now started to learn a lot about SCS and I would really like to get in touch with others that also have kids with this diagnosis. Unfortunately due to long waiting time at the hospitals, they cannot see us before May :( So all I can do is, to search the internet, trying to learn all there is to learn. We have been referred to an ear doctor and an eye doctor to get that sorted out.
Aug. 29th, 2008
When Victoria and William was born, Victorias cranium was very much out of shape, at first they told us that it was due to the position in my uterus. But to be safe, they took some clinical photos of her, when she was only 1 day old and we got an appointment to the pediatrician one month later.
In February 2008 we went to the first appointment expecting to be told that Victoria was okay and there was nothing to be worried about. So it came as a shock to us, when the pediatrician said that she might need surgery and that her sutures might be prematurely fused. She wasn*t an expert though, so she referred us to Aarhus University hospital for further examinations.
Ultimo March 2008 we had our first consultation with the Neurosurgeon Leif Christensen. A very competent man! He looked at our daughter for less than 2 min. and gave the diagnosis "right coronal synostosis" He explained that she had to be operated when she was about 8-9 months old.
Ultimo June 2008 we went to pre-op consultation at the hospital. We were presented to alle the staff we will meet during the time we are admitted to the hospital. The explained the proceedure in details for us.
CT and MR scans will take place on the day of surgery, so they do not have to put her in anesthesia so many times. They do not use helmets here in DK so unfortunately her back head will alway be crooked.
Ultimo August 2008 we had a checkup, they checked if the eye nerve was okay (they said that this is they way they can check if the brainpressure is rising) So she is a healthy little girl, they were very pleased with her, the only downer was that the docter ( not the NS ) was sure that Victoria has multiple fuses, as the flatning has begun to appear over her left eye too.
Right now, I just wish we were on the other side. My thoughts are on the operation every day now, and I'm so scared, that she might be sick before surgery, so they will postpone it...
Sep. 8th, 2008
Today I have corresponded with the NS to clarify whether or not they can fix her back head. Here is the translated version:
"The operation, which Victoria is going to have is principly the same which you have described ( CVR and FOA).
The positional flatness and croockedness in the bag head is not something which can be fixed with an operation. There is a global agreement about this, that eventhough there might be some places where the try to fix it.
As far as I recall, Victoria is having a CT scan before the surgery, with this we can see how many closed sutures there is.
It is not possible to do a surgery in the back head in the same seance as we do the forehead. This is because she will be lying on her back for the operation. Should we operate her backhead, she will be positioned on the stomack."
Well much can be said about the NS, he is not good with parents, but his reputation here in DK is, that he is the absolut best in the country.
So I guess, we just have to live with the fact that she will always have a crooked backhead.
March 15th, 2009
Time passed by soo fast and sometimes you wonder what struck you :)
Victoria had her operation Oct 1st. and it went really well. Considering that it has probably been the most difficult thing in my life. And seeing you little baby after this kind of operation, that is never funny, It is scary!!!
On the other hand, it wasn't as scary as I had thought. Victoria was a little trooper. 3 days after the operation, we were home again, She was terrible swollen, and wanted to be with us the whole time, understandably. But after 7-10 days, when she could see again, she wanted to be on the floor, so she could play with her brother. After that time just passed, the scar healed so nicely that today it is almost invisible and if you don't know it is there, you cannot see it. Here in Denmark we do not have any post-op interviews with the docter (which I find really weird!) So May 5th, 2009 is the first time the neuro surgeon is going to see Victoria since he released us from the hospital. I must say that she has changed quite a lot, and much of the facial croockedness has gone. Her scull is still in an abnormal shape, and is probably not goint to change.
3 weeks ago we got the result of her genetesting, and it showed that she had Saethre-Chotzen syndrome! I have now started to learn a lot about SCS and I would really like to get in touch with others that also have kids with this diagnosis. Unfortunately due to long waiting time at the hospitals, they cannot see us before May :( So all I can do is, to search the internet, trying to learn all there is to learn. We have been referred to an ear doctor and an eye doctor to get that sorted out.