Everest
07-19-2008, 01:55 PM
It has been a while since I first presented in the welcome mat, so now it´s time for a more detailed post.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
<o:p></o:p>
André was born on the October 27 2007, after a long labor (30 hours), at the very last moment doctors had to use vacuum extractor! He was 8.86 pounds. We named him André. Everything was fine and after two days we went back home. At 1.5 months we noticed a ridge on top of his had and we told the doctor… She said it was just normal.<o:p></o:p>
<o:p></o:p>
During Christmas we went to Portugal (our home country) and there we had an appointment with a pediatrician. We also mentioned the ridge and he said it was fine. His fontanel was clearly open, so no problem! At this moment we stopped thinking about this ridge... two doctors said it was normal so we also assumed the same. However, I started noticing that he head was not developing a round shape, but rather a long and narrow shape. I had a strange feeling about that… But two doctors had told me that his head was just fine…<o:p></o:p>
<o:p></o:p>
Back in the Netherlands, at 3 months he went to the well check up, but at this time the doctor there was a different one. She took a bit more time checking his head, but at the end did not mention anything. At the 6 months well check this same doctor took even more time checking André´s head. She mentioned that he might have a problem with a suture in his head, so she suggested that he should be seen by a pediatrician at the hospital. This was the time I went in the internet, typed craniosynostosis, and when I looked at pictures from other babies, I knew André had it!<o:p></o:p>
<o:p></o:p>
The consultation with the pediatrician went well, the very same day they did the X-ray, but we had to wait one long week for the results… and then the report stated that the sagittal suture was “starting to close, but was still open”. The pediatrician said she thought surgery may not be necessary, but she wanted my son to be seen by a craniofacial team at the Child Hospital in Utrecht. We knew something was not right and the appointment was 1 month ahead. We could not wait that long and we would need second opinions anyway…<o:p></o:p>
<o:p></o:p>
… so the week after we took a flight to Portugal (our home country). There we would meet a pediatrician and a pediatric surgeon (not specialized in cranio, but we knew these two doctors very well). We also made a third appointment with a very well known and experienced PS.<o:p></o:p>
<o:p></o:p>
We arrived to Portugal in the morning and immediately we went to see the pediatrician. He looked at the X-ray and said that everything looked fine, “the suture is open”!!! He advised us to keep an eye and it would be good to see a NS/PS but he thought surgery was a very remote possibility. At that moment we were a bit relieved but in that very same afternoon we would still have the appointments with the general pediatric surgeon and the plastic surgeon. The general pediatric surgeon looked at the X-ray felt André´s head and said that he did not had any craniosynostsis… at all!!! He acknowledge that his head had a boat shape, but “no way, the suture is not closed!!!” (I will need to have a chat with this doctor!!!)<o:p></o:p>
<o:p></o:p>
As you can imagine we were very relieved, we even mentioned of canceling the appointment with the PS, but deep inside I still knew that his head had a strange shape, and I was not getting any answers why that was happening… So we went to see the third doctor in that day… this time a plastic surgeon. He looked at André and while my wife was explaining why we were there I gave him the X-ray. He said: “I can look at it, but my diagnosis is already made… your son has the sagittal suture closed and needs an operation to correct it.” He then started to explain how the procedure would be… but I my mind was away… how could this doctor just say it by looking, while the others said everything was fine! A couple of hours before we were told that André did not had cranio….<o:p></o:p>
<o:p></o:p>
That day really felt like a roller coaster!! We would still have the appointment in Holland with the craniofacial team in three weeks, but we were completely confused with the contradicting diagnosis and we could not wait that long… we were still able to make an appointment with a pediatric NS in just two dayst (can you feel that I like Portugal, because all the appointments were done on a very short notice!). This NS also confirmed “just by looking” that André had craniosynostosis, but then he said what no one likes to hear… in his opinion it´s not proven yet by reliable data that there is an increased risk of developmental delays in a case of a single suture closed. He told us that if not operated our son would have peaks of increase ICP, but if that would end up as development delays, he was not sure, and according to him, research studies still do not make that link. He even mentioned that he had a colleague at the hospital that had sagittal cranio (never had operation). The only problem with him was the fact that cranio was very noticeable. So the opinion of this NS was that our son needed to go though surgery but mostly because of “cosmetic issues”. He said that, even being a NS, he was more concerned about the problems that our son would have from his appearance than any neurological problem. However his medical opinion would still to operate our son. We also asked this doctor, if we decided to operate our son in The Netherlands, how could he access the quality of the surgeons? His response was very simple, check if the surgeons are involved in research and how many operations they perform per year.<o:p></o:p>
<o:p></o:p>
What a week! We came back to the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:country-region w:st="on"><st1:place w:st="on">Netherlands</st1:place></st1:country-region>, convinced that André needed the operation, but now we needed to make sure that he would be operated by the most experience team. It was not difficult to find out that the Craniofacial team in Rotterdam performs around 85% of the total cranio surgeries in the Netherlands, but we had the appointment at Utrecht, the difficult part was convincing the pediatrician to change the appointment from Utrecht to Rotterdam. Strangely enough she came with the weirdest excuses… that in <st1:City w:st="on">Utrecht</st1:City> they are also very good and in <st1:City w:st="on"><st1:place w:st="on">Rotterdam</st1:place></st1:City> it would take months until we would get an appointment. So I phoned to <st1:City w:st="on"><st1:place w:st="on">Rotterdam</st1:place></st1:City> and they could see Andre the following week!!! I got really mad at the pediatrician and finally she referred us to Rotterdam… phew!<o:p></o:p>
<o:p></o:p>
The appointment in <st1:City w:st="on"><st1:place w:st="on">Rotterdam</st1:place></st1:City> just confirmed what we knew, André needs surgery, and they stressed the fact that the surgery is not only “cosmetic”, because there is a risk that he gets problems if not operated. We were very pleased with the PS surgeon and the team in general. A NS will also be at the operation. At that appointment, while in the waiting room, we saw so many babies with cranio (Friday is cranio weekly day). On one hand we did not feel alone, on the other one, we were sad to see so many babies that would face surgery. The only question that still remained was the timing of the operation. André was 7 months. In Portugal they would prefer to do the operation (Pi procedure) ASAP. In The Netherlands, the PS told us, that when babies are between 6 and 9 months they do not operate and prefer to wait until they are 9 – 12 months to perform a CVR. We then realized (with some helpful comments from CK parents) that the timing of the operation is highly dependent on what the PS/NS prefer. So we decided to have the surgery done at the Erasmus MC in Rotterdam. This meant that we need to wait longer, which is very hard, but the most important thing is that the surgery goes well!<o:p></o:p>
<o:p></o:p>
We have the CT scan scheduled for the 22<SUP>nd</SUP> of August. The surgery will probably take place in September or October.<o:p></o:p>
<o:p></o:p>
I would like to thank you all. This site is pretty amazing and all your stories and posts helped me very much so far, I hope that our story will also help new parents. To them, I can only say: Be very strong… everything will be just fine!! :wink
http://i347.photobucket.com/albums/p455/goncaloas/DSC_0020-1.jpg
<o:p></o:p>
André was born on the October 27 2007, after a long labor (30 hours), at the very last moment doctors had to use vacuum extractor! He was 8.86 pounds. We named him André. Everything was fine and after two days we went back home. At 1.5 months we noticed a ridge on top of his had and we told the doctor… She said it was just normal.<o:p></o:p>
<o:p></o:p>
During Christmas we went to Portugal (our home country) and there we had an appointment with a pediatrician. We also mentioned the ridge and he said it was fine. His fontanel was clearly open, so no problem! At this moment we stopped thinking about this ridge... two doctors said it was normal so we also assumed the same. However, I started noticing that he head was not developing a round shape, but rather a long and narrow shape. I had a strange feeling about that… But two doctors had told me that his head was just fine…<o:p></o:p>
<o:p></o:p>
Back in the Netherlands, at 3 months he went to the well check up, but at this time the doctor there was a different one. She took a bit more time checking his head, but at the end did not mention anything. At the 6 months well check this same doctor took even more time checking André´s head. She mentioned that he might have a problem with a suture in his head, so she suggested that he should be seen by a pediatrician at the hospital. This was the time I went in the internet, typed craniosynostosis, and when I looked at pictures from other babies, I knew André had it!<o:p></o:p>
<o:p></o:p>
The consultation with the pediatrician went well, the very same day they did the X-ray, but we had to wait one long week for the results… and then the report stated that the sagittal suture was “starting to close, but was still open”. The pediatrician said she thought surgery may not be necessary, but she wanted my son to be seen by a craniofacial team at the Child Hospital in Utrecht. We knew something was not right and the appointment was 1 month ahead. We could not wait that long and we would need second opinions anyway…<o:p></o:p>
<o:p></o:p>
… so the week after we took a flight to Portugal (our home country). There we would meet a pediatrician and a pediatric surgeon (not specialized in cranio, but we knew these two doctors very well). We also made a third appointment with a very well known and experienced PS.<o:p></o:p>
<o:p></o:p>
We arrived to Portugal in the morning and immediately we went to see the pediatrician. He looked at the X-ray and said that everything looked fine, “the suture is open”!!! He advised us to keep an eye and it would be good to see a NS/PS but he thought surgery was a very remote possibility. At that moment we were a bit relieved but in that very same afternoon we would still have the appointments with the general pediatric surgeon and the plastic surgeon. The general pediatric surgeon looked at the X-ray felt André´s head and said that he did not had any craniosynostsis… at all!!! He acknowledge that his head had a boat shape, but “no way, the suture is not closed!!!” (I will need to have a chat with this doctor!!!)<o:p></o:p>
<o:p></o:p>
As you can imagine we were very relieved, we even mentioned of canceling the appointment with the PS, but deep inside I still knew that his head had a strange shape, and I was not getting any answers why that was happening… So we went to see the third doctor in that day… this time a plastic surgeon. He looked at André and while my wife was explaining why we were there I gave him the X-ray. He said: “I can look at it, but my diagnosis is already made… your son has the sagittal suture closed and needs an operation to correct it.” He then started to explain how the procedure would be… but I my mind was away… how could this doctor just say it by looking, while the others said everything was fine! A couple of hours before we were told that André did not had cranio….<o:p></o:p>
<o:p></o:p>
That day really felt like a roller coaster!! We would still have the appointment in Holland with the craniofacial team in three weeks, but we were completely confused with the contradicting diagnosis and we could not wait that long… we were still able to make an appointment with a pediatric NS in just two dayst (can you feel that I like Portugal, because all the appointments were done on a very short notice!). This NS also confirmed “just by looking” that André had craniosynostosis, but then he said what no one likes to hear… in his opinion it´s not proven yet by reliable data that there is an increased risk of developmental delays in a case of a single suture closed. He told us that if not operated our son would have peaks of increase ICP, but if that would end up as development delays, he was not sure, and according to him, research studies still do not make that link. He even mentioned that he had a colleague at the hospital that had sagittal cranio (never had operation). The only problem with him was the fact that cranio was very noticeable. So the opinion of this NS was that our son needed to go though surgery but mostly because of “cosmetic issues”. He said that, even being a NS, he was more concerned about the problems that our son would have from his appearance than any neurological problem. However his medical opinion would still to operate our son. We also asked this doctor, if we decided to operate our son in The Netherlands, how could he access the quality of the surgeons? His response was very simple, check if the surgeons are involved in research and how many operations they perform per year.<o:p></o:p>
<o:p></o:p>
What a week! We came back to the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:country-region w:st="on"><st1:place w:st="on">Netherlands</st1:place></st1:country-region>, convinced that André needed the operation, but now we needed to make sure that he would be operated by the most experience team. It was not difficult to find out that the Craniofacial team in Rotterdam performs around 85% of the total cranio surgeries in the Netherlands, but we had the appointment at Utrecht, the difficult part was convincing the pediatrician to change the appointment from Utrecht to Rotterdam. Strangely enough she came with the weirdest excuses… that in <st1:City w:st="on">Utrecht</st1:City> they are also very good and in <st1:City w:st="on"><st1:place w:st="on">Rotterdam</st1:place></st1:City> it would take months until we would get an appointment. So I phoned to <st1:City w:st="on"><st1:place w:st="on">Rotterdam</st1:place></st1:City> and they could see Andre the following week!!! I got really mad at the pediatrician and finally she referred us to Rotterdam… phew!<o:p></o:p>
<o:p></o:p>
The appointment in <st1:City w:st="on"><st1:place w:st="on">Rotterdam</st1:place></st1:City> just confirmed what we knew, André needs surgery, and they stressed the fact that the surgery is not only “cosmetic”, because there is a risk that he gets problems if not operated. We were very pleased with the PS surgeon and the team in general. A NS will also be at the operation. At that appointment, while in the waiting room, we saw so many babies with cranio (Friday is cranio weekly day). On one hand we did not feel alone, on the other one, we were sad to see so many babies that would face surgery. The only question that still remained was the timing of the operation. André was 7 months. In Portugal they would prefer to do the operation (Pi procedure) ASAP. In The Netherlands, the PS told us, that when babies are between 6 and 9 months they do not operate and prefer to wait until they are 9 – 12 months to perform a CVR. We then realized (with some helpful comments from CK parents) that the timing of the operation is highly dependent on what the PS/NS prefer. So we decided to have the surgery done at the Erasmus MC in Rotterdam. This meant that we need to wait longer, which is very hard, but the most important thing is that the surgery goes well!<o:p></o:p>
<o:p></o:p>
We have the CT scan scheduled for the 22<SUP>nd</SUP> of August. The surgery will probably take place in September or October.<o:p></o:p>
<o:p></o:p>
I would like to thank you all. This site is pretty amazing and all your stories and posts helped me very much so far, I hope that our story will also help new parents. To them, I can only say: Be very strong… everything will be just fine!! :wink
http://i347.photobucket.com/albums/p455/goncaloas/DSC_0020-1.jpg