My Intro...

[Lisa]

Hello all. I am Lisa from Virginia, mom to Trevor 4, and our newest little guy Bradley 11/27/07 who has been diagnosed with Bilateral Coronal Cranio. With just being two weeks old, I am completely overwhelmed with all of the information out there, and all the appointments we are already having. We have met with a genetecist, and they have taken blood to do the first of several syndrome tests. We won't hear the results from the first for about 2 more weeks.
We meet with one neurosurgeon in January, and are looking at others so that we know all of our options. We have met with a opthamologist, and have a ENT appt in Jan. also.
I found this site a couple days ago, and already am feeling better, just to see others going through some of the same things that we are. I had NO idea that this was so common.
I hope to get to know you all a little better, and look forward to knowing all I can about this condition.

[Abby'sMom]

Hi Lisa,

I'm new here as well and I'm already amazed by how supportive and helpful everyone has been to me. I know you'll find the same to be true. My daughter Abby is just a month older than your Bradley and she is also bilateral coronal. When Abby was two weeks old I was going through exactly what you are and if you are anything like me postpartum hormones do not help! The more I am learning about craniosynostosis and seeing all the beautiful kids who have been treated and are doing just fine, the better I have felt. I hope this helps a little during this very stressful time. Welcome to the site!

[three.little.boys]

Hi Lisa-
Sorry to hear you are dealing with this too. My 8 month old son was just diagnosed with metopic and partial bicoronal today at the CT scan. (I just put a new post after this one on "the welcome mat" thread if you want to see my story). I asumed he was metopic, but was not ready for the bicoronal! Like you, we walked out the office in a dizzy stuper with a list of 4 additional doctors we have to see. The good news is that we will only have to wait about 1-2 months for the surgery. I think the anticipation is one of the worst parts! I can't imagine having to process all this information and emotions while recovering from childbirth and caring for a newborn around the clock! Make sure to take care of yourself first, because if mommy is not emotionally and physically well then she can not take good care of those sweet little ones!

Good luck, and just know that I am going through this with you!! And, by the way, I am mom of three little boys (8 mos, 3 and 5, but all three are at home with me as the 5 yr old did not make the Kindergarten age cut-off this year...agggg!!)...so I know you have your hands full with 2 little boys! Congrats and try to relish this time with your baby boy. He'll be ok and this will be behind you someday!

Sincerely,
Sadie

[Jenny]

wow.. nice to see all the newbies meeting each other!! I'm jenny, mom to mikayla who is 4, both my daughter and I are bi-coronal. I would love to chat with you if you have questions. Mikayla had surgery at 5 months old, a complete cranial vault remodel. All the appointments are quite overwhelming, but you'll get through it one day at a time!

[jenniferann75]

Hi Lisa, welcome to Cranio Kids! Congratulations on the birth of your son! I don't have much advice for the type of cranio you are dealing with (my son was sagittal) but I did want to introduce myself. :)

[Lisa]

Thank you all for the warm welcome. I am sure I will have LOADS of questions for you as we get closer to surgery!

[marisajo]

Welcome, Lisa! Sorry to hear that you are starting this journey with you new little man, but you've found an amazing place for support, and you live in a great area of the country with lots of good surgical teams around. I know it can feel so overwhelming at first, but early diagnosis is so important, so it's good that you have that part under your belt.

[sky16cb]

Welcome, we were also told about my little girl at 2 weeks of age that she she has cranio. Her saggital suture was closed. at 3 months of sge she had surgery and is in her helmet now full time. you are really lucky they found it young. The bones are softer in the head and the kids seem to bounce back better then having the surgery done when they are younger. My team of doc's is writeing a paper on how it's better to do the surgey younger then with an oldrer child.
welcome you found a great site that has helped me and my family alot. Can't wait to talk to you more.
Cat

[charliesmummy]

Welcome Lisa, im sorry to hear Bradley has cranio. You have found a great site with lots of wonderful people to offer support. x

[melsch]

Hi Lisa, welcome. I just responded to your other post, I too live in VA, are you in the DC area? I'm glad you found this site it is so helpful.

[Koops]

HI Lisa. It is scary finding out at birth isn't it. We were told Bailey may have to have an op when he was 1 say old. Our paedrition was great though and said "don't worry...it may fix itself...only cosmetic...come back at 6 weeks.." We put it out of our mind and enjoyed being parents..besides it a paed says it's ok..then it is...isn't it?!
Anyway when Bailey was only about 4 weeks old I was having a checkup with a nurse in my local town who informed me that Bailey should go straight to the doctor (after looking at his head) as he may have brain damage if it wasn't treated and would definetely have development issues (all not true). As you can imagine I was devasted and cried for a long time. She was wondering what was wrong! Silly cow! Anyway we rushed forward our appointment and the rest is history...Bailey had his op for sagital in June and is a beautiful, happy and so far as we know normal little boy. That nurse eventually apologised and I have forgiven her. I just wish people who don't have experience in particular fields stayed out of it and just referred people...not meddled!
Anyway...I am in a very waffling mood.
Your baby will be fine and before you know it you will be on the other side. It is a very difficult time but at least when they have it done as babies they have no memory of the op. Bailey just hates medicine now!!!!
Goodluck and keep us posted.

[mrs j]

Hi Lisa, my Bradley is metopic, so don't know much about other types of cranio, just wanted to welcome you and Bradley to this brilliant site.xx

[Lisa]

Yes, it was very scary finding out at birth. He was a c-section and we knew as soon as he was out that something was wrong. The peds and others were standing around him pointing, talking for the longest time. My husnband went over and brought him over to me. Right after birth, his forehead was so protruding that he didn't have a bridge to his nose at all. We had no idea at that time what was wrong or if he would even be ok.
On top of that, a little less than 36 hours after he was born, when doing a CT scan to figure out what was going on, they found a mass in the back of his head. They rushed in, telling us that he had to be transported ASAP to the nearest NICU hospital, all the while I wasn't even able to walk to the bathroom yet. So for over 24 hours I was still in the original hospital not able to be discharged, while my husband went to the other to be with Bradley. It was the most devastating and scary thing I have ever been through. I was able to get to the other one the next day, right before they took him to do the MRI. Two days later, the other hospital informed us that the mass was gone! We truly believe God took that mass away. Obviously it was there, since the other hospital was so fearful and acted so quickly. After they were no longer concerned about the mass, they were able to concentrate on diagnosing his cranio. And from there we were set up with all the specialists appointments and everything.
It has been a unforgettable almost 3 weeks, full of tears, fears, happiness, and joy. I am so grateful I have found this site. I can already tell you all will be a wonderful support to me and my family.

[melsch]

What an amazing story! I'm so sorry you had to experience that all while healing yourself. Thank god the mass went away! Stay strong, your little man will do wonderfully!

[sarahob]

Welcome to CranioKids. The support I received on here has been incredible. We didn't get Gavin's diagnosis until he was about 8 months old so I can't imagine having to deal with the diagnosis in a newborn. I look forward to learning more about you and your family. Hang in there and keep us posted with any updates.

[mayanetser]

Hi Lisa,
My child also has Bi-coronal and is scheduled for her surgery January 15, she will be 4.5 months old.
If you have any questions please feel free to ask, I will be happy to try and help.
Good luck, Maya

[Momof2Boys]

Welcome Lisa!
I know the appointments can be overwhelming, especially with a newborn. We knew Justin may had cranio before he was born with the thousand of ultra sounds and we had a scheduled C-section three weeks before he was due incase he needed any medical attention right away. He was born healthy and had a CT scan at one month to confirm that the right back suture had closed - one of the rarest forms of cranio. We did surgery when he was 5 1/2 months and that was the hardest wait. The surgery went well and he is doing great. Justin was colic too and had acid reflux so the first few months was extremely difficult to handle. My advice is to take each day by day and cherish every day. I look back now and I feel like I didn't get to enjoy Justin as a newborn as much as I wished I could have. They grow up so fast. It sounds like you are in good hands with doctors who caught this early.

[mayanetser]

wow.. nice to see all the newbies meeting each other!! I'm jenny, mom to mikayla who is 4, both my daughter and I are bi-coronal. I would love to chat with you if you have questions. Mikayla had surgery at 5 months old, a complete cranial vault remodel. All the appointments are quite overwhelming, but you'll get through it one day at a time!

Jenny, I was wondering if I may ask why did you do a complete cranial vault remodel, we are thinking of it. how long did it take?
thanks

[Jenny]

Maya,
We were actually very naive when it came to the CVR. Mikayla came along well before craniokids was born, so i didn't have the informative resource all of you have now. I knew surgery was the option, as i was also born with the same and surgery was done. I just followed due process. We saught out the best doctor that we could have come up with at childens hosp in detroit, and this was the option she provided to us. She went over the stats and showed us pics of many children she's worked on. We went with a cvr because of mikayla's head shape. She didn't have a normal shape, was tall, sort of box like, so for her to be cosmetically normal, they would have to do a cvr to remove and shape all the bones. Any other option would have left her with an unnatural shape. If they were to go in and "fix" her, i wanted them to do it right the first time.. I was completely against having a second surgery.. sooo.. all that said, basically what it comes down to is how natural you want the head to look. Also keep in mind, if you choose to do a lesser option that doesn't change the shape of the head, hats and things aren't going to fit right, cover the ears, etc.. not that thats a big deal, but I really wanted kayla to fit in. I didnt want her to grow up thinking why she looked "different" and why kids teased her. After all, she didn't ask to be born this way.
As far as the surgery, it took a little over 8 hours. She had a craniofacial plastic reconstructive surgeon, and a neurosurgeon. She had the best team i think than anyone could have ever asked for. I was concerned with the length of her being under anesthesia, but i knew it was what was best for her, and since it was performed at a childrens hospital with a pediatric anesthesiologist, i felt more at ease. They also gave me updates throughout the surgery to let me know how things were going.
I hope this helps you a little bit, each case is different.. do what feels best to you and what you think is best for your baby. I knew what was best for us, because of what i had already gone through as a child. And i was tired of everyone asking me what was wrong with my beautiful baby girl. She was perfect to me, but she didn't need to grow up like that and hating how she looked.