Laura
01-03-2008, 09:57 AM
My name is Laura. I live in Surrey in the UK. I have two children. Elliemae who is neraly 7 (no cranio), and a liitle boy, Beau who is 4 months and has Saggital Cranio.
Beau was born on the 28th Aug 07 and weighed 8lb 6oz. As soon as he was born me and my partner commented on the shape of Beaus head. It seemed to be a little elongated and his forhead seemed a little protruding. I stayed in hospital for two days and commented on his head numerous times to the midwifes on duty but was told that it was the moulding and it would go down. Before you get discharged from the hospital the ped has to come to check the baby over and to discharge you. Again i commented that i was not happy with Beaus head, and i could already feel a little ridge but was told again that it would go down as long as they have a soft spot it is fine. So away we went. My partner Scott told me that they were the doctors so they should no and i should just forget about it.. I couldnt forget about it though, ive had a child before so i no what shape a babys head should be. So i went to my doctor who was understanding a said he would measure Beaus head which turned out to be in normal sizing for his age. I went to my health vistior who said it was fine. It was actually starting to get on my nerves that people thought i was being to paranoid. I went back to my doctor and he said that he would measure Beaus head on a weekly basis. Again i saw my health vistiors three separate ones actually and each said it was fine. I even went as far as to ring the Nhs hotline and spoke to a nurse who told me in not so many words that i was imagining it and all babies have a ridge down there head. I also took Beau to the local A&E again i was told it was not there field. In the end i got so annoyed and frustrated with people ignoring my concerns that i did some investigating on the internet. I typed in Skull Problems in infants on google and as soon as Craniosynstosis popped up on the screen and i read the signs, i already knew this is what Beau had. I then looked at the photos of children with different types of cranio and saw Saggital Synostosis and it felt like a weight finally being lifted. I also read that the quicker it is diagnosied the better as the operatons are less invasive the younger the child is. Beau was 6 weeks. I printed everything up from the internet including pictures and took them to my doctors and demanded to be refered to a pedo at the hospital, funnily enough it was the same hospital where Beau had been born and the same hospital where i took Beau to A&E ad was told it wasnt there field. Well as soon as we went in for the appointment i let it all out. How i knew Beau had Saggital cranio how no one had listened to me. I showed her my findings off the internet and i gave her the pictures i printed up. She sent us for xrays i dint really give her a choice and they came back that Beau did indeed have Saggital....I was right all along !!
She refered me to Great Ormond Street Hospital in London. We were told that Professor Hayward who proforms the operations has to see all the referals first and ok the oppointment. So at this stage we might not of even of got seen if the professor didnt think it bad enough. Anyway thank god he booked us in for an appointment the foolowing week. We saw the Professors right hand man a doctor called David Dunaway and another specialist doctor also a cranio facial nurse specailist called Cathy. We were told Beau could have an operation if we wanted it, there was no question. You get bullied now days for having the wrong coloured hair so to have a funny shape head which could be corrected, there was just no question about it. The opperation they performed can only be done when the child is between 5-6 months. After that they have to do a whole skull remoulding, which is a longer and more harder opperation. Thank God i never did leave off asking questions and following my gut or otherwise Beau might of had to have the harder opperation. We were shown pictures of before and after operations that had been performed on children previosly. They also showed us pictures of the swelling which looked horible and upsetting but it worth it. We were given appointments to have a ct scan, eye tests, see the genetics and have blood tests, which all went fine. Beaus opperation is due on the 28th Jan 07 he will be five months. I am so scared, yet i seemed to be on auto pilot just acting as if nothings wrong maybe ive just put it to the back of my mind. Anyway thanks for listening and i will keep you updated with further appointments that are taking place, and of course the opperation. Love Laura x x
Beau was born on the 28th Aug 07 and weighed 8lb 6oz. As soon as he was born me and my partner commented on the shape of Beaus head. It seemed to be a little elongated and his forhead seemed a little protruding. I stayed in hospital for two days and commented on his head numerous times to the midwifes on duty but was told that it was the moulding and it would go down. Before you get discharged from the hospital the ped has to come to check the baby over and to discharge you. Again i commented that i was not happy with Beaus head, and i could already feel a little ridge but was told again that it would go down as long as they have a soft spot it is fine. So away we went. My partner Scott told me that they were the doctors so they should no and i should just forget about it.. I couldnt forget about it though, ive had a child before so i no what shape a babys head should be. So i went to my doctor who was understanding a said he would measure Beaus head which turned out to be in normal sizing for his age. I went to my health vistior who said it was fine. It was actually starting to get on my nerves that people thought i was being to paranoid. I went back to my doctor and he said that he would measure Beaus head on a weekly basis. Again i saw my health vistiors three separate ones actually and each said it was fine. I even went as far as to ring the Nhs hotline and spoke to a nurse who told me in not so many words that i was imagining it and all babies have a ridge down there head. I also took Beau to the local A&E again i was told it was not there field. In the end i got so annoyed and frustrated with people ignoring my concerns that i did some investigating on the internet. I typed in Skull Problems in infants on google and as soon as Craniosynstosis popped up on the screen and i read the signs, i already knew this is what Beau had. I then looked at the photos of children with different types of cranio and saw Saggital Synostosis and it felt like a weight finally being lifted. I also read that the quicker it is diagnosied the better as the operatons are less invasive the younger the child is. Beau was 6 weeks. I printed everything up from the internet including pictures and took them to my doctors and demanded to be refered to a pedo at the hospital, funnily enough it was the same hospital where Beau had been born and the same hospital where i took Beau to A&E ad was told it wasnt there field. Well as soon as we went in for the appointment i let it all out. How i knew Beau had Saggital cranio how no one had listened to me. I showed her my findings off the internet and i gave her the pictures i printed up. She sent us for xrays i dint really give her a choice and they came back that Beau did indeed have Saggital....I was right all along !!
She refered me to Great Ormond Street Hospital in London. We were told that Professor Hayward who proforms the operations has to see all the referals first and ok the oppointment. So at this stage we might not of even of got seen if the professor didnt think it bad enough. Anyway thank god he booked us in for an appointment the foolowing week. We saw the Professors right hand man a doctor called David Dunaway and another specialist doctor also a cranio facial nurse specailist called Cathy. We were told Beau could have an operation if we wanted it, there was no question. You get bullied now days for having the wrong coloured hair so to have a funny shape head which could be corrected, there was just no question about it. The opperation they performed can only be done when the child is between 5-6 months. After that they have to do a whole skull remoulding, which is a longer and more harder opperation. Thank God i never did leave off asking questions and following my gut or otherwise Beau might of had to have the harder opperation. We were shown pictures of before and after operations that had been performed on children previosly. They also showed us pictures of the swelling which looked horible and upsetting but it worth it. We were given appointments to have a ct scan, eye tests, see the genetics and have blood tests, which all went fine. Beaus opperation is due on the 28th Jan 07 he will be five months. I am so scared, yet i seemed to be on auto pilot just acting as if nothings wrong maybe ive just put it to the back of my mind. Anyway thanks for listening and i will keep you updated with further appointments that are taking place, and of course the opperation. Love Laura x x