zachary born with metopic craniosynostosis on 10-26-07

[zacksmommy102607]

on october 26, 2007, i unexpectedly went in to early labor. i was only 37 1/2 weeks along when my water broke, and then edured 20 hrs of painful labor followed by a c-section. after all that my handsome son zachary was born. our very first baby!!

i kinda noticed his head was a little pointy, but didnt think anything of it since everyone has different shaped heads. the next morning a pediatrician came into my room and told me they had concerns about my sons head. saying they didnt know if he had a syndrom or not. i was shocked! my husband and i are both 26, and healthy. things like this didnt happen to healthy people (or so i thought) zack had an x-ray at the hospital at one day old. i was terrified. they mentioned that they then decided that he didnt have a syndrom. and that he didnt exhibit any syndromic characteristics. what a relief! but we still needed to follow up with a geneticist.

zachary also had a ct scan at 1 month old confirming the metopic craniosynostosis. no one in either side of our families has anything remotely like this. it was a shock, im still in shock. ive been on such a rollercoaster ride of emotions. ive been angry, angry that this has happened, and not understanding why. pissed off that people who do drugs or drink durring their pregnancies have perfect babies, yet people like us who took care of themselves, have babies who are as the doctors call it "deformed". that is such a hard word to hear. i look at my son, and think he's absolutly perfect! ive mostly been sad and scared. sad that my son has to go through so much, and scared of the unknown, scared this will happen again.

we saw a genecist and they confirmed that zachary does not have a syndrom, and that it is an isolated non-syndromic occurance of metopic craniosynostosis. its a reliefe, but im still terrified. we just had an appointment with a pediatric neurosurgen, and alhtough this is cosmetic, we made the very hard decision to have it corrected. we have an appointment on monday with a pediatric plastic surgen who works with the neurosurgon. we're very very scared, but know this is the best thing for him. surgery has not been scheduled yet, they want to wait a few months. so now its just a waiting game. waiting for that phone call.

everyne we've talked to says metopic is the easiest to correct, and the fact that his soft spots are wide open is a plus. im still terrifiedthough.

im glad that i found this site and know that im not alone. ive felt very alone for the past 3 months. we have such a supportive family, but they have no idea what im really going through.

thank you for letting me vent

[Candice]

Welcome to Cranio Kids! You are not alone, I am so glad you found us! Thank you for sharing your story. We're here for you!!! :hugg

[Nicholas' Mom]

Welcome to cranio kids. Everything you are feeling is exactly what I felt! It is so hard hearing that your child has to go through a long surgery, and it's such a whirlwind of emotions. I also thought it was so unfair that I was so careful during my pregnancy and yet this still happened. As you'll here from everyone on this board, it has NOTHING to do with anything you did. It's just something that happens.

You are lucky that you had a good pediatrician. Most of us here on the board had to self-diagnose our kids. My son was in the NICU because he was premature, and from the beginning, we wondered about his head shape (he also has metopic cranio). We asked 5 different pediatricians, including the NICU "experts" and they all said it wasn't anything to worry about. Little did they know, as we soon found out...

I know this is easier said than done, but try not to worry too much. Zachary will do great with the surgery. It is a long surgery, and it will be hard on you, but you'll be surprised how quickly Zachary bounces back. My son, Nicholas, was back to his old self within 3 days (outside of sleeping, that is, but that is a short term side effect I can live with!).

You have found a great group of folks here, and you will get all of the support you need. Please keep us updated. If you have any pictures of Zachary, we'd love to see them! :-)

Where will Zachary's surgery be? At what age is your NS/PS team recommending the surgery? Nicholas was diagnosed at about 4 weeks, and we waited until he was 6 months old for the surgery. You'll find many moms on the board whose kids had surgery earlier, and many later. It seems different NS have varying opinions on what the "best" age is. Regardless of age, it seems like all of the kids did great with the surgery.

Again, welcome to the site!

[Wyatt's Mom]

Welcome to Cranio Kids! My son Wyatt (almost 10 months) has metopic cranio as well. He is set to have surgery on February 27th.

Everything you are feeling is very similar to most moms on here. It really sucks that our beautiful kids have to go through all of this when we are so careful during our pregnancies.

Zachary will do great I'm sure. The worrying and waiting is the hardest. We were told it was our decision to go ahead with surgery as well and it was the hardest decision my husband and I have ever had to make. Just know that you are NOT alone and no question is a stupid one. I've asked so many questions and gotten so many awesome answers. You have found the best resource for yourself in finding this website. There are so many awesome moms on here.

Where are you located? Where will your sons surgery be?

Keep us posted on how your appointments go. Oh, and if you want maybe check out the list of questions to take with you to appointments. It really helped me to have a list of questions to ask the neurosurgeon and the plastic surgeon.

Good luck. We are all here for you.

Post some pictures of your little guy too, we always love to see those!

[charliesmummy]

Welcome to Cranio Kids, you are certainly not alone & im glad you found us. My son had surgery for Metopic in September at the age of 14 months and he is doing great. Please ask as many questions as you want as there is always someone only too willing to help xx

[xl1200c]

I'm so glad you have found us, we will be happy to help. My son had surgery in December for metopic. He is doing great. Everyone will tell you how well these babies do, but it's so hard to believe until you see for yourself - and you will.

It's such a rollercoaster, we all go through it and we understand. For goodness sake, these are our kids, and its staggering news to hear. It sounds like you have an excellent team of doctors and you are doing all the right things.

Please don't hesitate to ask if you have ANY questions at all.

[Jenny]

welcome! I know it is such an aweful roller coaster ride of emotions. It sounds like you've gotten a great start on the diagnosis and the process of things. A large majority of us haven't been so lucky. Our babies bounce back so fast! Zach will do well, i'm sure. Myself and my daughter are both bi-coronal, so we can't relate in that aspect, but i had my surgery 27 years ago, at 6 months of age, and my daughter at 5 months. Ours is obviously syndromic, but the most of the time for everyone else, it just happens. I'm sure i'm not being very reassurring, but try not to think it's your fault. I've been there, and it takes a lot to get out of it. At least you have a great resource to help you through it!

[amanda0502]

welcome to cranio kids my daughter amanda had metopic surgery in september at the age of 16mths and is doing very well. where are you from and at what hospital will you be having the surgery. This site is a wonderful place to be.

keri

[three.little.boys]

Welcome...sorry you have felt so alone in the past 3 months! You are wrong on one part, though. Your son still is perfect!!! He always will be. Challenges such as this surgery will become part of his his story of life that makes up who he is!! He will have THE BEST scar on the playground! (although, he will have to move some hair to show it off!)

Our surgeon prefers to call it "reconstructive" surgery..not just cosmetic. He says cosmetic is when you take something that is OK and enhance it. Reconstructive is when you take something that is not right and make it right!! It's a good way to look at it!

While metopic may be easy to fix, I know it can cause some of the worst swelling of the eyes and face because the area they are working on is close to these features.

We offically found out that Quintin was metopic in Dec via CT scan, but I *knew* in my heart that he was metopic since October. It has been a long journey...and his surgery is creeping closer in 3 weeks! Talk A LOT with all of the parents on this site. We are all here for one another!!

Please keep us posted on what is going on! Also, you can read many of our stories in the "our stories" section. I know that the following stories are children who are also metopic: David, Fiona, Wyatt, Quintin...and several others.

Take care...you are doing a great thing for your son!
Sadie

[mrs j]

Hi and welcome to the boards, you have come across an excellent source of help and advice with fantastic parents. My son is also metopic, he is going for surgery in 2wks, we have had a long journey to get to this point, everyone here knows exactly how you're feeling, terrified, we will all be on the other side of surgery before you know it, but in the mean time, we are all here for you through the good & bad days that lie ahead, keep us updated with your progress, and welcome again.xx

[marisajo]

Welcome! My Zachary had surgery for metopic at 8 months of age, and is now a happy, healthy 4 year old. I know it all seems overwhelming right now, but this is a great place for support and advice...lean on the expertise here as much as you need too!

[Janet]

Welcome to Cranio Kids...I'm also a Metopic Mommy!!! My daughter Fiona had her surgery 4 months ago...she did great!!! SHe has healed well and looks wonderful. If you have any questions, please ask!!

[kelly27]

Just wanted to say hi and welcome. My daughter Jasmine is also metopic and is due to have her operation in 2 1/2 weeks. This site is fantastic, there is so much info and support here and people are always willing to help.
Kelly x

[seth's mommy]

Hi
I just wanted to add my Hello!

Im new here too and Feel just like you do Very scared. The only thing I can say is how lovely the people on here are and how much they have helped me and responded so quickly to my messages, I feel like I have know them for ages and in fact its been about a week.

So welcome

Becky and Seth xx

[Kaitlynn's Mommy]

Hello, and Welcome! Like everyone has said you've found some great mom's here! Good luck with everythign! :)