My daughter Mackenzie, with Metopic...

[Mackenzies_MOM]

Hi, I am Bonnie. I have an eleven month old daughter, who has just been diagnosed with Metopic Cranio.. Such a blow.. We thought that we had truly been blessed with a healthy child. (Well, we are definately blessed to have her.. and she is so beautiful to us.. Just unfortunate that she has to go through this.)

Mackenzie was born with a ridge down the middle of her forehead (and it was a little large). I didn't worry too much because I dont' have the smallest forehead in the world... Just chalked it up to a bad gene..LOL.. We took Mackenzie to check-ups every month, and at least one "sick" visit per month... Nothing was EVER sad about her head. The growth was normal and her "soft spot" was there, so I guess the doctors seem to be blind to that fact that something was wrong. Well, one day when she was ten months old, she got sick with a sinus infection. I tried my best to get her an appointment but they didn't have any until late that evening (which I couldn't do.. I had to pick my stepchildren up from there mothers)... So I got up early the next day (Saturday AM) and took her in. The doctor that happen to be on call (I have never seen her in my life) walks in the door and says "What's the matter with her head?" ALMOST INSTANTLY... It's hard to believe that the other two or three doctors she has been seeing failed to even notice... but she did automatically. Well, anyway... she sent her for a CT scan and called me at about ten that night and here we are. Surgery is set for December 12th... (five days after her first bday).. I am scared to death. Everything happens for a reason, and God will see us through.

Bonnie

[xl1200c]

Welcome to the boards. Our son is also having surgery for his metopic on December 12th. The waiting and the worrying are definately alot. I am given so much confidence by seeing the success stories of the other familes here. Our family wishes you the best, we'll be thinking of you.

[sarahob]

Hi Bonnie. Welcome to CranioKids and thank you for sharing your story. I know how scared you are right now but you will be amazed at how well Mackenzie will do and how fast she will bounce back. Gavin had surgery 5 days before his first birthday. Where are you from? I know we would all love to see pictures of Mackenzie.

[Janet]

Hi Bonnie~
My baby girl had metopic surgery on Seopt 26, I know it's such a shock to hear that your baby has to have surgery, but honestly they bounce back so fast. If you have any questions please ask. You can see Fiona's surgery pictures under the surgery before and after forum. Fiona was born with the ridge too, the OB and my family doctor (who I love) didn't say anything about it. I think a lot of doctor's don't really look for it, or just they just think it was because of the birth. One of the nurses said to my husband after FIona was born, not to worry about her head, it'll "pop" out and look normal soon, (he just told me that about 1 week ago). Welcome to cranio kids!!!

[mrs j]

Hi Bonnie, and welcome, thankyou for sharing your story, my son has is metopic as well, when he was 4wks his softspot was completely gone he was diagnosed quite early, but unfortunately here we are still waiting for susrgery, he will be 3 in january.
I'll be following Mckenzie's progress.
And i wish you all the best for her surgery. I will be thinking of you both and Cathy & David. xx

[charliesmummy]

Welcome to Cranio Kids Bonnie, as you can see there is a lot of us mummy's with Metopic babies and most of us have had the same struggle as you have. My son had surgery on Sep 6th and he has bounced back so quickly, our babies are truely amazing as i know you will find out when Mackenzie has her surgery. It's much harder on us parents than it is on our children & having surgery so young means they wont even remember a thing. Good luck for December 12th & if you have any questions at all please feel free to as as there is a fantastic bunch of mum's & dad's on this site only too willing to help xx

[Tawnia]

Welcome to the site! My daughter Azia had surgery for metopic cranio almost 7 weeks ago :o)

[MelSydney]

Hi there,

My son Alexander has the ridge too as you can see from his pic. We have our CT scan this Wednesday and follow up with the Paed. Neurosurgeon on Dec 10. We were the same as you, you don't really see anything wrong with your baby until someone points it out - when we came on this site we could so how much Alexanders ridge was like other metopic bubs who had to have surgery.
All the best for the 12th. Would be interested to see before and after pics.

[melsch]

Welcome! My son was diagnosed with metopic before we even left the hospital. Apparently, we are one of the lucky ones in that regard, although at the time it sure didn't feel that way. The surgery is so scary to face, but the recovery time is so amazing! Our son had surgery just under 3 weeks ago and if it weren't for the scar, I doubt anyone would believe us! We'll be praying for you and your family.

[Mackenzies_MOM]

Thanks for all the replies. I can't believe how much the website helps. No one in my family, including my husband wants to even discuss it with me. That's fine if that is how they deal with it... but me on the other hand.. I like to be educated. Makes me feel like I have a hand on the whole situation.


Anyways,
Thanks everyone!
Bonnie

[EmmaLacey]

Bonnie,

I know exactly how you feel. All my family lives far away so I don't get to talk to them much about this. I mostly have my husband and my friends. My husband sounds the same as yours. I tried to show him some pictures on this site of some of the kids and how well they are doing and he didn't want to see them. I made a website for Emma using www.caringbridge.org (http://www.caringbridge.org) to help keep family and friends up to date and I don't think he appreciates that its really helping me to deal with this better. He is still very much in shock and is worried sick about how she will be after the fact. I specifically asked yesterday in one of the forums about recovery as my husband seems to think she is going to be crying all the time and in constant pain for two months!!! I tried to explain to him that from what I've read online I don't think its going to be that bad and he told me I can't believe everything I read on the internet!! So anyways, I'm glad that I found everyone here. I have done so much reading and research that I feel like I know alot about this condition now and to think that 3 weeks ago today I heard the word "Craniosynostosis" for the first time in my life.

It makes me think that there should be more awareness made about this condition. Not only for parents but it seems pediatricians miss it all the time as well. The amount of new people to this board every week with the same story.....nobody new. My daughter wasn't actually diagnosed until the 6 month well check, even though they knew she didn't have a softspot from the time she was 1 month old. I feel like if I had known about this I could have done something between months 1 and 6. However, I don't know if the outcome would have been any different expect that she may have already had her surgery by now. I guess there is a difference of opinion as to the right age for surgery. Each case is different. I've heard anytime before 12 months is ideal. I've also heard around 3 - 4 months is the best time. I've also heard over 6 months is better. So, who knows?

You can read about my daughter Emma in the "our stories" forum or click on the link in my signature below to see her webpage that I created. My daughter's surgery is the day after your McKenzie's. I will thinking about you on the 12th and beyond and hopefully we can connect again. I'm not sure what the internet situation is at my hospital but hopefully I can update everyone on Emma's progress before we come home from the hospital. I plan on staying the entire time even though my 3 year old will be having a fit! PM me if you need to chat or vent or whatever!!

Remember..... Knowledge is Power!!!!!!!

[cheryl2]

I think that's pretty common. I was the one who did most of the research on cranio and Clara's other issues. They just have other ways of dealing with all of this. They are still very concerned, of course, they just have other ways of dealing with it.

Good luck to everyone with surgery coming up!