Trying to find information

[EricksMom]

Can anyone help me find more information on genetic conditions that would involve an elongated skull? We are adopting a baby who may have craniosynostosis, but the doctors cannot tell for sure until he comes home (right now our baby is in foster care in Guatemala). The doctors in Guatemala have noticed an elongated head and also some genetic abnormalities, including low-set ears. They said they don't know what it is and the doctors here in the states said that they won't know anything until they see him.

I am trying to find any information I can on how to recognize craniosynostosis. I was reading on this section of the forum about genetic disorders that involve cranial abnormalities and so I am wondering if our baby may have one of those. I realize that you guys aren't doctors, but if you could help me find out more information, I would really appreciate it!

Thanks in advance for any information you can provide. We are committed to helping this little one (his name is Erick) to reach his full potential and we would like to learn as much as we can before he comes home.

Sincerely,
Rachel Whitmire
www.freewebs.com/erickadoption (http://www.freewebs.com/erickadoption)

Here's a link to pictures of our baby in case it might help (http://www.freewebs.com/erickadoption/february2006.htm). Besides, he's just so cute! :-)

[mikaylasmommy]

Like you said we are not doctors. But, I would say he has some kind of closure. If it is like the Dr's say and his head is oblong from front to back he would have sagital cranio. I think it looks as if he may have multiple closures. This may or may not mean he has a syndrome. Some cranio occurs spontaneously. Either way I can tell from your web site that you already love him so much that you will be able to help him through what ever he may encounter. Some cranio babies only have to have one surgery that is called a Cranial Vault Reconstruction. Some have to have more than one. We have a lot of pictures of our kids on here if you would like to take a look at before and after surgery. Most of the kids on this board have very minimal or no developmental delays at all. The only way you can get a correct diagnosis of cranio is from an MRI. Hope this helps!
:welcome

[craniomommynbaby]

Awww...he is adorable.
I have to agree with Jenny that it looks like there is some kind of closure, possibly multiple sutures. Looking at the tall forehead and slightly uneven eyes, I wonder if one or both coronal sutures are fused.
As far as finding information, many of my questions were answered by the wonderful people on these boards. Otherwise, I did Google searches with craniosynostosis. If you want more technical information, the PubMed site has a searchable database of papers.
If your little one is indeed a cranio kid, maybe the Jorge Posada Foundation can help. They do not help in the States much, but they help children in other countries get the surgery. It seems like they focus their help on children in South or Central America. I could be wrong, but it would not hurt to check them out.
Good luck, and keep us posted.

[Jenny]

first, i would like to say congrats to you! I am so happy to see people adopting children with conditions, and not looking for the "perfect" baby! On another note, i wouldn't say his ears are really low set, because the top of his ears line up with his eyes, which is where they are supposed to be, but it's disillusioning because his head is so tall. My daughter looked just like that when she was born. the sutures on the sides of her head were closed. attached is a pic. Her doctor believes it may be crouzon's syndrome, but we wont know until genetic testing is performed. She had a corrective surgery at 5 months. I hope this may help a little, but i really don't have anywhere to advise you to get more info, since i have the condition as well, so i already knew about it.

[KALEMSMOM]

I just wabted to say welcome. Your little guy is an Angel. It does look like he has some sort of cranio but not sur on which one. It's very hard to tell, you would really need a pic, like the girls have said of a top view. I've seen a lot of cranio babies on these boards and none of them have any real delays and are all doing fabulous!!! Cranio babies are amazing strong little troopers. I hope you get all of the help and answers you need. If you have any questions or just need to talk please feel free.

[Katie]

Welcome to Cranio Kids Rachel! :welcome
Erick sure is a doll, I bet you can't wait until he is home in your arms! :adore
There are actually quite a few cranio related syndromes out there, but some cases are spontanious as well. Here is a link to the most common syndromes. If you click in the row labeled OMIM, there is a brief description of each type of syndrome. http://www-ermm.cbcu.cam.ac.uk/03005805h.htm I hope this helps a little. Please keep us updated on the adoption and let us know when the little man is home!

[Rhonda O]

Welcome, Rachel!! Congrats on adopting such a beautiful baby! My son had an elongated head when he was born, he was diagnosed with sagittal cranio. I hope that you had little Erick home with you soon and have your questions answered.

[verdon2]

:no I can not help in this area, but I would like to welcome you to the site and wish you luck w/ Eric. Hope you have him home and have your questions answered soon!!! Looking forward to getting to know you all!:curtsy

[EricksMom]

Thank you all for your kind words and congratulations. We are so excited about Erick. To us, he is just perfect in every way! We know that if he did not have a special condition then we never would have heard about him because he would not have been listed as a special needs child.

It is good to know that you are all here to support us if he does have a cranial issue. Good luck to all of you and your sweet children.

~Rachel