View Full Version : New Here
02-23-2010, 06:47 PM
I am new here but I have been 'lurking' the past few weeks. Here is *the beginning* of our story:
My son, Samuel was born via urgent C-section on 2/7/10, due to breech presentation. My OB/GYN immediately suspected craniosynostosis and brought it to our attention later that day (after talking with the pediatrician). A head ultrasound was ordered to rule out hydrocephalus (it was negative). The rest of our hospital stay is such a blur. We cried, and prayed, and cried some more. It was truly the best and worst few days of our lives.
We are very blessed to have such a wonderful OB/GYN. I have always known that he is excellent, but now I am pretty convinced that he is a saint. When we left the hospital, we had already spoken to a geneticist and had an appointment set up with a neurosurgeon, all courtesy of our OB.
By the way, it appears that our son has saggital synostosis.
We see the neurosurgeon next week (March 2). We are anxiously awaiting that appointment and the NS's recommendations. I am sure this will be the first of many postings/updates. Any advice or words of encouragement are very much appreciated.
02-23-2010, 07:41 PM
It's wonderful to meet you. I only wish it could be under better circumstances :)
Congratulations on your new baby Sam. I'm not very familiar with sagittal synostosis (my son was metopic), but many of our moms are. I'm sure they'll be on to welcome you asap! In the meantime, I'd be happy to help answer any questions you have that aren't suture specific.
This site is amazing (as I'm sure you've noticed if you've been "lurking", lol) and the ladies are all very knowledgeable and supportive. You're in great hands here!
Best of luck at your NS appt. I don't know if you're already aware, but there is a thread with questions to ask in the testing and surgery forum.
02-23-2010, 08:55 PM
Congratulations on your new baby boy!
It must be so hard to go through this from day 1 but thankfully it is a condition that can be fixed. My daughter was sagittal too. She was officially diagnosed at 4 months and had surgery at 4 1/2 months. We just had our 4 month post-op check and she's doing wonderfully. Just remember that things will get better and easier. It's impossible not to worry but don't forget to enjoy this time with your little guy too.
Good luck with your appointment. Let us know if you have any questions.
02-23-2010, 09:11 PM
Welcome and congrats on your baby! I know with alot of unexpected doctor appointments ahead, things can be so emotional but take each day by day. They grow up so fast and you want to enjoy these moments.
That is awesome that your OB/GYN was the one to get the ball rolling. Too many doctors really do not have much knowledge of cranio. For your first appointment since you may want to write down your questions prior. It can be overwhelming once the NS starts talking and you want to make sure you leave with all your questions answered. Good luck with the appointment and I am glad you found us here. It is an amazing support.
02-23-2010, 09:41 PM
Welcome to CK! Congrats on the birth of Sam! He is precious!!! I'm sorry to hear he may have sagittal synostosis. My son was born with it too! However, we didn't find out until 9 months! It was discovered by our pediatrician. There are pros and cons to finding out right away.
I'm so pleased to hear that your OB discovered it. It's great that he coordinated everything for you. There is enough to worry about with a newborn... And...sometimes trying to get Dr appts scheduled can be the hardest part. Many people have to wait a long time to see the NS. It's great that you'll be able to get some answers quickly. (Although, I know March 2 feels like it's very far away right now. )
I'm glad you decided to join CK. I think the others gave great advice. The next several months will be very busy. Remember to enjoy every moment with Sam. I look forward to getting to know you and Sam!
02-23-2010, 09:54 PM
Welcome! I am sorry you are going through this, but this is an awesome support system! I am just a little further into this journey than you. My son is having surgery on 3/3.
Please feel free to PM me if you have any questions. I think you are lucky to get an early diagnosis. Depending on the severity, you could have the choice of 2 different procedures. We just made our decision last week after thoroughly exploring both options. Feel free to check out my blog if you want to know more about our meetings and doctors.
I know how anxious you must feel about meeting the neurosurgeon. It will help so much to get some questions answered, I am sure! As the other moms have said, enjoy your baby!! Know that you have found a great place for support!
02-24-2010, 02:13 AM
Hi and welcome to CK, congratulations on the birth of your little baby son sam. so sorry this has hit you from day 1. Our story started when Josh was 10 days old and that was bad enough. keep us posted on your appointment. you will get through this, we are all hear for you night and day xxxxx
02-24-2010, 03:37 AM
Welcome! We are almost a year out from our surgery now and I can tell you, you will all be great! It is scary right now and hard to be calm and have faith in anything, learning as much as you can will help you to be prepared and calm and know that it will all turn out ok. We are sagittal too, my son and my husband.. so I have seen baby and recovery and grown up awesome hot man... cranio is scary but when you are a year past you'll be so proud of your whole family! My husband trimmed our babies hair today and I can tell you I love that scar! It is amazing and so are they.
So the thing to know is they recover fast from surgery, they grow up tough, smart, athletic, and pretty darn good looking too! and no one would ever know my husband ever had an abnormal head shape, and his scar never bothered him ever... and I liked it about him when I first discovered it... cool story having surgery as an infant.... little did I know!
02-24-2010, 08:11 AM
Hi and welcome. Congrats on your new little one! He is precious. I am so sorry you had to find us this way, but you have found a great place for support and information. This is a scary ride and I feel for you that you have to start it so soon. We have not been through our surgery yet, but the ladies on here have been so reassuring. Good luck at your appt and keep us posted! Enjoy that little guy, he's a treasure! : )
02-24-2010, 09:53 AM
Welcome! This is the crazy cranio journey but you have come to the right place! Like all the other women on here I am here to help, no question is too silly. Sam is a cutie tootie!
02-24-2010, 10:36 AM
Welcome to Ck!!! Glad you decided to come out to play! :giggle I am sorry that you have to join us on this ride, but do know that we are all here for eachother and it makes this ride far less rough when you have friends to help brace the bumps. With that being said, I think it is WONDERFUL that your OB was able to identify the cranio! What a blessing to find out so soon...although, I am sure it didn't seem that way in the hospital! :no Take everything day by day and before you know it, you will be on the other side!
02-24-2010, 11:26 AM
Your son is precious!!!! Congratulations!! I'm so sorry that you've had to join our lively bunch here on the crazy cranio coaster, but you've come to the right place for support and information. The kids do amazingly well with the corrective surgery and bounce right back. Feel free to ask anything that comes to mind. There are no stupid questions here... Hang in there and keep us posted. Looking forward to getting to know you...
02-24-2010, 12:17 PM
Welcome to CK- I am sorry you are facing sugery but we will be here evry step of the way. there are no silly questions- so ask away momma-
02-24-2010, 10:07 PM
We were also diagnosed with Saggital before we left the hospital. I knew the moment I saw Layne's ridge that he had Cranio. In some ways it is easier but harder. If you have any questions or need to talk feel free to email firstname.lastname@example.org or message me on here
02-25-2010, 12:25 AM
Thanks to everyone for the warm welcome!
02-25-2010, 10:09 AM
I just crossed over to the other side after being on yours for four and a half months. I know exactly what you are going through...Zeeshaan was diagnosed with Sagittal Synostosis before he left the hospital as well. The first three weeks post partum went in a blur of pediatrician and neurosurgeon visits. The most difficult part was choosing which surgeon and which type of surgery to go with.
The thing is every surgeon usually does just one type of surgery and is a strong advocate of that type usually. We were offered Strip Carniectomy by one, modified clamshell by another and CVR by the third. We decided to go with the most complex one, which is CVR because that has the least chances of resurgery. I don't think I am brave enough to go through this again. Wewent with Dr. Goodrich and Dr staffenberg. They both told us that they used to do Craniectomy in the past but found CVR has much better results and now they only do that. Infact Dr. Staffenberg the plastic surgeon said that with cases like Zeeshaan he has seen cases where Strip or clamshell was done and did not work and he had to go back in later on to either put strip of bone in for holes that never covered up or in some cases do CVR as the craniectomy did not work at all. Hearing all that and reading up onit, we decided to go for the Posterior CVR which took place yesterday. We are one day post op and can't believe it has happened and believe me we are glad we did it...
You can call me if you have any questions or just need to talk. 646 678 9725. I wil be glad to help in any which way I can.. Good luck to you ans Sam...
Sending hugs your way.
02-26-2010, 08:20 PM
Congrats on the new baby! You must be going crazy with emotions right now. I'm so glad you have found us. This site has been God sent for me. My daughter was diagnosed with sagittal at 2 months. she was so close to the deadline for endoscopic that I almost wished it was caught earlier. But anyway these babies do heal amazingly well and so do the parents. Please feel free to write me anytime if u want info about the endoscopic procedure or helmet therapy. We have had a great journey and we are all stronger for it.
02-26-2010, 11:21 PM
WELCOME!!! your story sounds much like mine!!! my ob didn't notice anything but his first dr apt. with his Pedi when he was 4 days old he told me. He was the Pedi @ the hospital and knew immediatly what he had and ordered a ct! My son was diagnosed with metopic and had surgery jan 22, 08 at six months old. Its a lot to take in but its good to know and know things are ok! Congrats on your new baby... let me know if you need anything!
02-28-2010, 01:46 PM
Waiting is the tough part. Glad you found us.
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