Twins with Craniosynostosis

[Toby & Will's Mum]

Hello there,
My name is Kristen, and I have 3 year old twin boys (Toby & Will) who were both born with Sagittal Craniosynostosis. They both had two lots of surgery, the first at 7 weeks old, and the second at 5 months. The procedure that they had was called a strip craniectomy, which is where a large rectangular shape of skull is removed along the sagittal suture area. Although it was very scary at the time, we haven't looked back. The boys are very normal little 3 year olds, and I have trouble keeping up with them and all their energy. We also have a 6 year old daughter who has been a fantastic big sister.

I would love to hear from other parents, and am especially interested in finding other sets of twins with this condition. :elmo

[Wyatt's Mom]

Hello and welcome! I'm glad your twins made it through their surgeries and are doing well. What an ordeal that must have been.

Glad you found craniokids. I'm sure there are other twin moms on here although I'm not sure I've seen any other twins who both had cranio. Interesting though.

I would LOVE to see some pictures of your kids if you are willing to share.

[Holly]

Welcome to craniokids. I don't have twins but i have 2 boys that are 2 years apart that had sagittal cranio. They both had the strip cranioetomy. How come your boys had to have it done twice?

[amizzle]

Hello. I have twins also (boy & girl) only our boy had cranio. He also had the strip craniectomy (endoscopically) at 10 weeks old. He is now in helmet therapy. Did your boys wear helmets? I know of a family that goes to our same doctor who also had 2 boys that were sagittal. Glad your boys are doing so well post op. I would also love to know about the 2nd surgery.

[Everest]

Hi and welcome to CK! Glad to her that everything went fine with your twins. I know a case in which one of the twins had cranio (sagittal) but the other didn't. It would be nice to see some pictures of your boys.

[mckennasmum]

hi and welcome! Great to have another aussie on here! Must have been such a hard and stressful time to have both boys going through surgery! But welcome and would love to see some photos!

[beccad]

Hello and welcome!! I'm so glad you found CK you will be a big help to other parents. Having older children that have been through this is so reassuring to those of us that have just gone through it with our babies. I would love to see pictures and hear more of your story.

[three.little.boys]

hi and welcome!! I am sure it was TWICE as hard to go through the surgeries with two kiddos at once! We admire your strength! Nice to meet you! We'd all LOVE to see pics of your little bubbies....

[Toby & Will's Mum]

Hello all. This is so great to be able to talk with people who are going through what we went through...wish I'd found this site 3 years ago!! Well lots of you wanted to know why the boys had the surgery twice. After the first surgery thier skull grew back and fused again too quickly and their heads were still very out of shape. So exactly the same procedure was done again, and it was a pretty good result. The boys were both quite severe, and they still have very prominent foreheads, and the back of Toby's head is still long and narrow. Our boys didn't have to wear helmets. Our neurosurgeon told us that helmets weren't really used much in Australia. I sometimes think it probably should have been an option for us, but we are definately happy with how it has all turned out. And now that they are older and have longer hair, it isn't as noticeable. Now, I will try and put a photo on here...hope it works!! I have also got an album on my profile page, so check that out too!



http://www.craniokids.org/support/picture.php?albumid=79&pictureid=838

[charliesmummy]

Hi Kristen & welcome to craniokids im glad you've finally found us. Your boys are adorable, i love the picture of them wrestling on the ground. There are lot's of Saggital mums on here that im sure will be intouch, im a Metopic mum myself. Looking forward to getting to know you x

[Tawnia]

Welcome to CK! I just have the one little munchkin so far but I wanted to say welcome and your boys are adorable! I always wanted twins :)

[Amy K]

Welcome to CK! My little guy was born with sagittal synostosis too. Your boys are adorable!!

[mattricia]

Hi Kristen! Welcome to CK!!! Your kiddos look like such happy boys. It's good to have you here.

(Where is Orange? I spent time in Perth in June/July, 1998. I loved it there!!!)

[Toby & Will's Mum]

Hi Kristen! Welcome to CK!!! Your kiddos look like such happy boys. It's good to have you here.

(Where is Orange? I spent time in Perth in June/July, 1998. I loved it there!!!)
Hi Tricia, Orange is on the opposite side of Australia to Perth! it's in the state of New South Wales.

[Toby & Will's Mum]

Welcome to CK! I just have the one little munchkin so far but I wanted to say welcome and your boys are adorable! I always wanted twins :)
Ha Ha, I always wanted twins too...but I don't think I could do it again!!! They are great, but soooo much work!

[Toby & Will's Mum]

Welcome to CK! My little guy was born with sagittal synostosis too. Your boys are adorable!!
Thank you, your little boy looks gorgeous too...I can see mischief in those eyes!! Does he have to have any more surgery or anything?

[kking]

Kristen ~ welcome! Your boys are the cutest thing ever! Their smiles are priceless.

We don't have twins, but have 2 kiddos that both have metopic cranio. One has had 2 surgeries, the other only one.

[stina101803]

Welcome to CK!
:colors
Wow, you must have your hands full with twin boys! They look wonderful! I just have one boy and he's very "spirited" (I think that's the PC term at the moment). Ha!

[twinmom]

Hi
And welcome to CK. It is a great place to be. I also have twins ( 7½ months old) but only the girl has cranio. She will have her first surgery in a months time.

I must say, that your boys look absolutely adorable.