Scared to death of possible CS diagnosis

[Dean'smom]

Hi. I found this website and I am surprised to hear about so many cases of Craniosynostosis, as I had never heard of it before. I have a three month old son who has had x-rays and a CT this week. My husband and I have noticed a mildly crooked forehead since birth, but dr's weren't concerned- he was a big baby and attributed the flatness to being squished in the womb. At his 2 month appointment, I asked again about it, and our pediatrician went ahead and had us go for x-rays, then a CT. There is some fusing, not sure what suture, or how many, we see a ped. neurosurgeon next week. I am really scared about the prospect of surgery for my little guy, who I think is perfect just the way he is. It was hard enough for me to watch him get his 2 month shots. Not sure what the prognosis will be, but I am preparing myself for surgery. I am so afraid that something will happen to him, and I am also afraid of learning disabilities down the line, and long term problems. Any words of advice or encouragement would be very appreciated!

[forgvn724]

Let me be the first to say :colors . I am so sorry to hear about your son. This group is an awesome support. I read that you do not know which sutures are fused, it might be a good idea to ask for a copy of the CT report to have on hand as well as a copy of the scan itself. Not all NS use the scan for final diagnoses (although I think that this is a little scary in itself).
It is alwasy good to go into the appointments armed with as much information as possible. This website as well as CAPPSKIDS.org has a lot of info to offer.
Please feel free to post any questions that you may have.

[MikenAustinsMommy]

Welcome to the board! You have definately found the right place for support. Everyone here is wonderful.

If your baby has a mildly crooked forehead, it may be coronal craniosynostosis?

We know what you are going through. The waiting for the diagnosis, and the waiting for the surgery is the hardest part. Thankfully babies bounce back quickly, and will never remember a thing. I know that this is a very scary time, but if you think about the positives, it will help you get through it. You have a very happy healthy baby and craniosynostosis is treatable.

Take Care,

[Katie]

:welcome

All of us here can identify what you are feeling right now :hugg It is a difficult and scary journey, but you will be amazed by how well these little ones do. I often feel that the surgery is harder for us than it is them. Many times within days the kids act as though nothing happened. Permannent disabilites, though possible, are very rare with treated craniosynostis. Your son is so young and it sounds like you have a good Dr. who listened to your concerns and is taking action quickly, which is awesome. Please let us know how your appointment goes :hugg

[Jennifer]

Welcome to the site. The girls are right---- it is such a scary time, but please remember- this is fixable. With a 'crooked' head-- I'd guess coronal- but that's a complete guess. The good news- IF it is cranio, you've caught it early- that gives you more options and more opportunities to research what needs to be done.

We're here to help, if you have a question- ASK. If your feeling bad- VENT.....we've been there or some are there.....It's an amazing journey that you may be going on, but in the end- these babies are amazing, and do so well with surgery and with most there are no long term effects. Many :huggs to you. Please keep us posted and know that were here!

[ExpatJen]

Welcome! You have come to the right place for information and support. And it is very good news that you got a diagnosis so early. That is so important. It also sounds to me that it is liekly one of the coronal sutures is fused. The good news is that, when timely, the surgery can correct it - the surgery may be frightening but it is also miraculous. Ask as many questions as you can - most of the people here are so well informed and can pretty much give you an answer on anything to do with cranio.

(((HUG)))

[craniomommynbaby]

Welcome!

Cranio is more common than people think, but for some reason it is not well known. Hopefully that makes sense. :lol Sites like these as well as the great parents on this journey are working hard to get the word out so that the awareness will help with earlier diagnoses and research and all.

When my son was first born, he also had a squished face from being in the birth canal for over 4-1/2 hours. I was in denial at first, but a doctor pointed out that cranio (bicoronal in our case) was the cause of the tall forehead. They could tell because of the absence of palpable sutures. To me, my baby looked fine, but the professionals could definitely see a problem. It took a little while to come to acceptance, but the CT scan gave confirmation and helped me to come to terms with it all. The journey is definitely a roller coaster, but we are here to help you with your ride. As previously mentioned, it is much harder on the parents than it is on the kids. I am living proof of that. I had cranio surgery when I was 2 months old. I never understood what my parents went through until I had to do it with my son. It really gives you a new perspective on life.
By the way, most cranio cases treated in a timely manner turn out fine. My parents were told back in 1977 that I was going to have some mental retardation because doctors were not aware of the pliability of the brain. Today, I am happily married, and I am a math professor. I have no mental retardation whatsoever.

[Dean'smom]

Thank you all so much for your replies. I am glad I found this site, I think it will help me get through this. After our appointment next Wednesday, I will share what the next step will be for us. I may be getting ahead of myself, as I am not sure if surgery is needed (but I'm assuming that it is), but I am most worried about my son being in pain after surgery, I am terrified that he will be scared and confused. Also, I am still nursing, and I wonder when he will be able to nurse after surgery. Thanks!

[MikenAustinsMommy]

He will definately be able to nurse after surgery. I just stopped nursing my baby 2 months ago (at 12 months), and he had surgery at 4.5 months.

You will have alot of questions and worries that come to mind... Feel free to ask away

[ExpatJen]

pain after surgery was what most frightened me too, other than the obvious. But as it turns out, the skull has very few nerves and there really isn't a huge issue with pain afterwards - it is there, of course, but not to an extent that cannot be managed well. It will amaze you how quickly children who have this surgery are off pain meds - a matter of days. I constantly asked my daughter if she was in pain and she never once said "yes" (she was 4 years old when she had her surgery).

[mom2mykidos3]

:welcome My daughter is due to have surgery in October for Left coronal CS. I felt the same way, it is so overwhelming. Just know that we are here for you. What you are feeling is normal. We have all felt it. That was the biggest comfort to me. Just knowing that I wasn't out of my mind. I wish you the best.

[plukids]

Welcome to Craniokids! Yes, you can nurse!! You have come to the right place for education and support. Know that you can count on us ....CranioMoms & Dads.....to do the best we can to ease your fears and answer your questions. We're here for you! Keep us posted and I will definitely keep your family in my thoughts and prayers.

[Danandtricial]

:colors I have just been trough this and I will tell you, this is a great scorce for info and support. My daughter (sagittal) is just 1 week post op and we are not even giving her tylonol any more. If surgery is needed you will be suprised how quickly these little guys and gals recover. I have said that if it were me that had the surgery I would still be flat on my back hitting the morphine button. It is a very emotional and frightning time we all know but once your on "the other side " That worry is like a rocking chair you keep movinig and moving but never going any where . I am not saying don't worry If you didn't you would not be a parent. our NS said to us that we took a bigger risk getting in the car to go see him than the risk of the surgery.