View Full Version : hello from the uk, recent sagittal diagnosis
01-03-2008, 06:14 AM
hi everyone, we have been reading your site since our little princess Rose was diagnosed with sagittal suture fusion a couple of weeks ago. it has been a great help.
we are awaiting our surgery date at Great Ormond street hospital london it will be either next week or the week after , she is almost 7 months so it is very tight for time as they only like to do the first type of operation upto 6 months old but they say they have done it at seven months.
it has been the hardest decision we have ever had to make and still are not convinced we are doing the right thing . the surgeons gave the decision to us as it was considered cosmetic surgery,
i'm sure we will think of a few question's over the next couple of days ,but just thouhgt we would introduce ourselves first, thanks for the great site keep it up.
p.s if anyone else has experience from GOS hospital we would love to hear your story of how it went.
Alan + Nicola.
01-03-2008, 07:26 AM
Well welcome. You found a great site. It helped us out alot when Autumn had surgery 2 months ago. What you are feeling is normal...And everyone here is here to help you with this hard time. Can't wait to talk more
01-03-2008, 08:00 AM
Hi Alan and Nicola - welcome to the site. My son Nicholas has metopic cranio and is scheduled for surgery in Wash DC next week. Our NS and Plastic Surgeon are also telling us this is considered a cosmetic surgery at this point, but they also both quickly agreed it was necessary for his emotional well-being and if one of their kids had cranio, they wouldn't hesitate in doing the surgery. The told us that over time, the head deformity will become more pronounced and that will make things harder for Nicholas (acceptance from the other kids, self esteem, etc). I agree with you, though, hearing it's a "cosmetic" surgery is so tough - it makes you doubt whether you are doing the right thing. In my heart I know it's the right thing, but it's such a scary operation, especially at such a young age, that it's a hard decision to make - handing him over to the hospital staff on the day of the surgery will be the hardest thing we'll ever do. I'm sure you feel the same way. We'll keep Rose and your family in our thoughts over the next two weeks. Best of luck to you, and don't feel guilty about making the decision to have the surgery - I personally think it's the right thing to do.
01-03-2008, 08:04 AM
Hi Aan & Nicola, its nice to see yet another cranio family from the uk, i don't know a lot about sagittal as my wee boy is metopic, he is being seen at John Radcliffe in oxford, we have known from Bradley was a couple of months old that he was metopic, but due to problems with our local hospital we have had quite a tough journey, i found out about the 4 supra hospitals in the uk on this forum, and we were seen at oxford a week before christmas, hopefully Bradley will have surgery some time in February. I know exactly what you mean about it being the toughest decision you'll probably ever make, we were in the same boat, but the decision to have surgery now was basically the surgeons choice as things have been left so long, they now feel that Bradley has to have the surgery not just for cosmetic reasons but also his brain isn't happy, thats what the surgeon said, obviously he went into the reasons why, so we now feel a massive sense of relief and at the same time, just absolutely scared out of our witts, as Bradley will be 3 in a couple of weeks, i just wish this was done when he was a baby, anyway l look forward to getting to know you better and will be thinking of you all over the next couple of weeks.xxx
01-03-2008, 08:08 AM
My son's having surgery next week as well. He's 5 months old. Don't doubt for a minute that you are doing the right thing as long as you have your baby's best interest in mind! Keep us posted on you surgery date!
01-03-2008, 11:18 AM
Welcome to the site. I have 2 little sagittal boys. I just noticed another family has joined who is having surgery at the same hospital. Maybe you could get togather with them. Good luck to your family.
01-03-2008, 11:42 AM
HI and welcome! This site was so very helpful to me during and after our sons surgery. Logan was diagnosed with metopic just 3 days after he was born and had his surgery in November at 3 months. They too told us it was cosmetic, but felt that the emotional reasons were worth it. It's scary to think about and you do question if it's the right thing, but as Elizabeth said, if you have your child's best interest in mind it's always the right thing.
01-03-2008, 11:46 AM
Welcome to the site. I'm glad you found it. The support here is amazing. My son had sagittal surgery last July. He had a strip craniectomy. What type of surgery do they plan on for Rose?
01-03-2008, 12:59 PM
My name is Laura and im new to this site to..Im already addicted. I did write you a message it will be in your in box i think. But my little boy is having surgery at Great Ormond Street aswell. His surgery is booked for 28th Jan 08 so about 4 weeks to go. Beau will be exactly 5 months when he has the op. Professor Hayward is performing it.
When we was at the hospital for our cat scan and other test we met a little boy called Seb who had had the operation the week before, he looked amazing. The scar looked brillant also. In our mind there was never a question but seeing that little boy really set our mind at ease. Also the staff at GOSH have been amazing couldnt ask for a better hospital. Hope this all helps. Love Laura x
01-03-2008, 01:34 PM
Welcome to Cranio Kids, you really have found a fantastic site & we will give you all the support you need to get you through your journey with Cranio. There are a few UK mums and some lovely ones from Ireland too so feel free to ask as many questions as you want. My son Charlie had Metopic surgery at John Radcliffe Oxford and he is doing great. He was 14 months at the time of surgery. Looking forward to getting to know you both xx
01-03-2008, 01:53 PM
hi again everyone, thank you all for your support, it has helped us alot already,
Cant believe it, we have just had a call from Great Ormond street to ask us if we would be able
to go tomorrow for the op. !!! we know in our hearts that it is good news and best for Rose
due to her age ( being over 6 months already ) and she seems well within herself.
but we don't feel ready in ours minds yet ( but maybe we never will).
so we have pulled ourselves together and agreed to go.!
we have to be there early in morning for pre-op checks ready for afternoon surgery.
we think she is having a strip cranio and another manouver to realign the plates,
(can't remember the exact terms they used )
i'm sure we will be on here all night to see what else we can find out and read some of your stories.
so any advice for tomorrow would be much appreciated, thanks again,
(p.s laura we will reply to your p.m as soon as grandparents leave with our nother to kids
who they are looking after for us.)
love to all Alan + Nicola.x
01-03-2008, 02:30 PM
Welcome to the site. This is a great resource for you to ask questions and just be able vent your feelings. It is such an emotional roller coaster and so nice to know that you are not alone. There are many families here (from Canada, US and UK) that are either going through this or have gone through it. My daughter Emma had surgery for sagittal (and as it turned out metopic as well) on Dec 13th. We were also told that it was a cosmetic procedure and that she would not have any developmental delays if we didn't do the surgery (how they know this for sure, I don't know) but unlike others on this site we weren't actually given a choice. I mean I guess in a way we could have chosen not to do it, but we were never asked, it was just assumed once they had diagnosed us that we would be going through with it. I never once questioned it. Even though I knew that there are risks involved with surgery I felt like if she had been diagnosed with something that could actually be fixed, than we should everything we can to get it fixed so she could grow and develop normally. We were already starting to notice her mishapen head and it would've only gotten worse had we not done the surgery. Our baby girl was 7 months old and 3 days when she had her surgery. I've heard so many different things about age when it comes to this surgery. Our NS's opinion was that the younger babies (3 months old) have skull bones that aren't too thick yet, thus are easier to cut through. Also, with the sagittal, the head shape becomes elongated and if you do the surgery early the elongation hasn't quite occured yet. With Emma, she was already bulging in the back and slightly in the forehead so the procedure he used to open her skul and widen it was called the PI procedure. He then did a Squeeze procedure to kind of squish her head from front to back so it was not so long (more round). I hope I'm not confusing you with too many details, but he felt that by doing her surgery this way it would be immediate results and she wouldn't need a helmet. You can see from my before and after pictures that they results were indeed immediate. Her brain can now grow width ways as well as length ways.
If you have any questions, don't hesitate to PM me or anyone else here I'm sure. You will find a ton of info on this site if you read back through the posts as I think there is at least 2 or 3 babies a month on here who have had surgery.
01-03-2008, 02:30 PM
Omg, thats brilliant news, i know you probably don't think it is, but the sooner its over and done with the better, well thats how i feel anyway. I will be thinking of all 3 of you all day tomorrow and send lots and lots of prayers for little Rose, i can't imagine how you are feeling right now, but you will all get through it, big hugs to you all.xxx
01-03-2008, 02:36 PM
I just read your post that you are going for surgery tomorrow!!!! Wow, yes it will be good to get it over with. Getting through the surgery is obviously difficult, but I have to say, the waiting for the surgery was even harder. You will have a rough couple of days ahead of you, but you will get through it and so will Rose. She will do great and amaze you!! Just think, a week from today you will probably be home from the hospital and it will all be behind you. Hopefully you will have internet access at the hospital and you can sign on and let us know how she is doing! Good luck to you and make sure you check out the posts about what to bring to the hospital for baby and for you. There is some good information on here about that - not sure where, but you'll find it.
01-03-2008, 05:07 PM
Welcome to the boards. What an exciting time for you to have your surgery moved so close, you are so brave and strong to go for it on the short notice. I don't think you'll regret it, I truly believe you will be amazed. We'll be thinking of you.
01-03-2008, 07:47 PM
WOW, tomorrow?? Good luck...I'll be praying for you!
01-04-2008, 01:47 AM
Hi, welcome! my name is Anna and my daughter Lily had surgery last january for saggital - she was 18 months a the time. We live in New Zealand, but my husband is a pom so have spent much time in UK. We had a late diagnosis which was very traumatic for us and Lily had to have a longer, more difficult proceedure done. We really had the decision made for us, our surgeon had worked all over the world with cranio and said that the reasons for doing the surgery for cranio go beyond cosmetic and I can see that he was right. At 17 months my Lily was a very happy and bright little thing but immediately following her surgery at 18 months i noticed some subtle changes. I counted that she understood and said 37 words at the time of her surgery and six weeks later this jumped to well over 100! The surgeon said her brain was visibly quite squashed. Lilys surgery went amazingly well and she is a beautiful little peach. I wish you all the best for your surgery, it will soon all be over and you will be able to put it all behind you.
01-04-2008, 06:27 AM
Alan & Nicola, im thinking of you all day today, sending lots of prayers, and look forward to little Rose's progress report, good luck.xxx
01-04-2008, 08:38 AM
Alan, Nicola and Rose. I will be thinking of you and praying for your family. I wish I could wrap my arms around you and tell you that everything will be okay. You will get through it and she will be great!! Please let us know how she is when you get a chance.
01-04-2008, 11:43 AM
I just read your posts and wanted to welcome you and let you know I'm lifting your little Rose up in Prayer today!
01-05-2008, 01:41 AM
I'm prayin too for your little Rose! She will amaze you!
01-05-2008, 03:40 AM
Welcome to Cranio Kids! My daughter Azia had surgery for metopic cranio 3 months ago and I am SO glad that I did the surgery now. I wasn't sure before but now that I look at her I am so glad I did it!
01-05-2008, 02:37 PM
Welcome to the site!!! I am so sorry that I didn't see this thread sooner. I will keep Rose and your family in my thoughts!
01-05-2008, 10:09 PM
I also just saw your post. I will keep you all in my thoughts and prayers. Please give us an update when you get a chance.
01-06-2008, 09:10 AM
OMG, i just read the update so i guess surgery is over with by now. Hope everything went well for your little one x
01-08-2008, 05:28 PM
hi everyone ,we are home at last, .
i think i had better move this post to the 'our stories ' section ,
so i will let you all know how it went on there
see you there. x nicola.
01-08-2008, 05:49 PM
Yehh, littlerose, well done, glad shes home, you must be sooo over the moon nicola.xxx
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