View Full Version : Also new. Son diagnosed at 10 days old.
03-26-2008, 05:17 PM
I'm so glad to find this site. Our second son has left coronal. We are grateful there is something to help him.
I delivered on the floor where I work and once all my coworkers cleared the room to let us rest, I really had time to look at Rohan and see that his face was really crooked. It wasn't just swelling either, the bones felt uneven. In the back of my mind, I said "He has cranio" as I had seen this one other time. I envisioned all these surgeries and such until the pediatrician came in. He reassured me that the asymmetry was just because of the way Rohan was stuffed in my pelvis. He had been all in one place and very low, so that made sense.
Over the next couple of days, His face seemed to level out a bit, but it was still visibly asymmetrical. Our pediatrician was out of town and when we went in for his 3 day check up, the doctor standing in for her said the same thing as the ped in the hospital, but suggested we come back for our 2 week appt early since we were so worried.
At 10 days old, we arrived for our appt, sure that our ped would say the same thing as the other two. She did not. She took some photos of his head and consulted a geneticist while we were there. We did x-rays and the skull asymmetry was really obvious, even to my untrained eye. A CT scan was next and that clinched it. Unlike so many of the posts I've read here, she called me from home that day to tell me that the CT showed left unicoronal synostosis. I'm grateful she was so on top of everything.
We had an appt with the neurosurgeon and plastics on Monday. We had researched on the internet and were sure we could do the endoscopic procedure. Even though the NS uses that procedure for many other cranial surgeries, he did not recommend it for our son. The CVR sounds so horrible! When we researched exactly what bones were removed, reshaped, and replaced, it was WORSE than we had envisioned from the two doctors' descriptions.
We know he's in good hands and there is no way we would let this go uncorrected, but the surgery sounds so awful! We are still trying to get our brains around it and what will happen with our beautiful boy.
He has to have a consult with an ophthalmologist in a few weeks as his eyes are not tracking together either. It's all so scary.
Glad I've found this group and we are looking forward to reading this board who are kind enough to post their experiences.
03-26-2008, 05:21 PM
I don't know anything about the type of cranio your son has but wanted to welcome you to the site. There are moms of babies who have the same cranio so I'm sure they will be lots of help.
I know you are very scared about the CVR surgery but I'm sure your son will do fine. There are so many success stories on here.
Please feel free to post any questions you have. There are no stupid questions. I've asked so many already. Everyone on here is great. You are in the best place possible. Your son is lucky to have such a great mom who is on top of everything. He'll do great!
03-26-2008, 06:05 PM
OMG, scary for you, i would hate to deliver at work, as I work at taco bell! My first daughter was bicoronal, and she had the CVR.. luckily we were naive then, but we didn't have this wonderful support either. Katie is my SIL, and she's the one who came up with this site, an inspiration from her son Dillon, my nephew, only that was after my daughter's surgery. The CVR is pretty extensive, but the docs know what they are doing, and they have been doing this for over 20 years, as I had it done too as a baby. My advise to you is to learn as much as possible, but not sa to how the exact procedure is done, because it will scare the living you know what out of you.. Many moms here vouch the same. The reason the like to do CVR's is because of the asymetry caused by coronal cranio, and a lot of times they have to reconstruct the orbits of the eyes. My daughter got a nose job too! Honestly, it is heart wrenching for a parent to go through this journey, but we have awesome support here, and so many of us are here for you whenever you need us! Good Luck!
03-26-2008, 06:30 PM
:welcome I am glad that you have found this site! I cant believe you had deliver at work!! Wow that is WOW!!
03-26-2008, 06:46 PM
Welcome! You have an amazing story!!! Yes, the CVR sounds horrible, but it is all over so fast and they are back to themselves in 3-4 days. Beats the heak out of lifelong brain damage!!!
Nice to meet you!
03-26-2008, 07:22 PM
Welcome to the boards!
03-26-2008, 07:35 PM
Um guys, I'm assuming she works at a hospital. I don't think she delivered at work like you guys are thinking! LOL I could be wrong though! that is just how I figured it. hee hee.
03-26-2008, 07:45 PM
LOL!!! Never thought of that... temporary blonde moment??
03-26-2008, 08:19 PM
Ha ha ha! Oh jeez, I led you all down a wrong path...not intentionally, though. I'd just registered and filled out my profile stating I was an OB nurse. Had it in my brain I guess, and then didn't clarify in my post. Sorry!
Actually, I was taking care of another labor patient and her family when I went into labor myself. Ended up in the room right next to them :icon_mrgr
Thanks for the warm welcome. Just had a call from a family who used our surgeons for their daughter's CVR. That helped us too.
03-26-2008, 08:25 PM
Hi Ally. Welcome to craniokids. I'm sorry that your new baby has cranio, but as others have said, you've landed in a wonderful place. The emotional support and information i've gotten from the moms here, has truly gotten me through the past few months. We're all here for you.
I remember going through what you've described as far as trying to wrap your brain around what's going to happen. Just get as much information as you absolutely need, and then STOP. After i got my questions answered and freaked out about the surgical details, i had to sort of block them out a bit. I think your mind does that naturally to help you cope. You just sort of go into auto-mode and keep thinking about that "surgery date" in the weeks that lead up to it. The beauty of this site is all the expertise of parents who've gone before you, as well as the friendships that develop.
Haha, Sarah, i bet you're right. I was thinking the same thing and going to say, well don't hospitals have beds??? Silly me...
03-26-2008, 08:27 PM
Welcome to Cranio Kids...you'll get so much support here. Glad you found us, you have an amazing story!!!
03-26-2008, 08:27 PM
Oops, i took too long typing, i didn't notice your update about being an OB nurse. How weird to go into labor while taking care of another laboring mother!!! Fun story for them to tell. :)
03-26-2008, 10:17 PM
I just posted the other day too. My son was also diagnosed the first week by his pediatrician. We are very lucky that he was so proactive, although at first we just wanted to think it was how he sat in my pelvis...I can totally relate to what you are going through. Patrick's surgery date is May 14th. His Metopic and saggital sutures are closed. It is very scary and overwhelming, although he is 3 1/2 months now so we have had allot of time to digest all the information and I can now think and talk about it without always breaking down. I am thinking about all the positives and giving thanks that his situation isn't any worse than it is. I always think there is someone else out there in a worse situation and I am grateful that he, and we, will all come out of this just fine. Keep us posted how things are going. I have been lucky to find this site nd have read some very inspirational stories.
Nice to meet you.
Patrick 2 and 3 months
03-26-2008, 11:38 PM
Welcome to the boards here. My daughter Julianna has Left Coronal and is having surgery April 15. She was referred to a NS at her 2 month check-up at the urging of me. My ped didn't think anything was wrong with her. Boy was he wrong. I was like you and researched everything before our visit with the NS and PS and new everything there was to know during the appointments. That was a refreshing feeling for me because I had already had that initial shock and good cry out before our doctor's appointment.
Good luck with everything!! I'm glad you found us.
03-27-2008, 12:12 AM
Welcome!! I've been posting her about a month now and LOVE the support and encouragement I've received. Reading one successful surgery after another has really been a lifeline for me!!!!
I too had thought you delievered on the "floor" at "work." haha....I went back and reread after the clarification and now it makes perfect sense.
My daughter Leah has right coronal cranio and was diagnosed at her 2 week well check...I too was glad it was caught early. She is having surgery in 18 days (April 14) and is having the CVR but it is being done with ENDOCSCOPES with smaller incisions in a minimally-invasive fashion. They will also be doing a FOA (frontal orbit advancement). You can see my daughters CT scans on our blog listed in my signature if you are interested. The only drs I know of that do this surgery method are ours in Hollywood, FL and Drs. Cohen and Meltzer out of San Diego. She will be in a helmet for 3-6 months afterward.
Leah was born the week before your baby so we are in the same boat as far as finding this out right after birth....not too much time living a "normal" life before this was thrust at us!! It has been an overwhelming roller coaster but has been much easier by the moms here!!
03-27-2008, 01:12 AM
Seagrape...Leah and I share the same birthday! I'll be interested to hear how her surgery goes. Pls keep us posted!
03-27-2008, 07:19 AM
Seth, my 20 month old son also has left uni coronal, we were not as lucky and he was not diagnosed until he ws around 13 months old, he is due for surgery end of May, You have found a great sight, and Im so glad you didnt work in the local super market!!! Not a good place to give birth! lol
good luck with your sons surgery he is a gorgeous baby.
03-28-2008, 01:17 AM
Thanks for your post! I had to post you back our children look very similiar, I remember finding this website and the capps one and when I looked at other children with left or right coronal, it almost made me cry, because I felt I was looking right at my own child, you will find great support here and the journey will make the reward all worth while! I can't say it won't be easy cause I am on the same journey as you!! Welcome aboard!
03-28-2008, 01:21 AM
By the way I use to live in Appleton, WI originally from the UP of Michigan, I have a close friend whose son had an extremely rare genetic condition called ectodermaldysplasia and he went to the Madison's Childrens Hospital and told me that it was an awesome hospital and the people are exceptional, I am sure they will be able to help you there!
03-28-2008, 09:18 AM
Slesage...I used to live in Colo. Sprgs!
Thanks for the good word on Madison's Hospital. We found a surgeon there who came highly recommended from a friend, our ped, and a nurse friend of mine at work.
We've considered a second opinion, but all the driving and not knowing how to get info on the surgeons in a place we don't know sounds not so good to us. I am pretty sure we will go with them.
Blessings your way as you head down this path too! Keep us posted.
03-28-2008, 09:25 AM
Welcome to the site!
03-28-2008, 09:28 AM
Ally, you're in the neighborhood, so make sure you check out the details for the first annual craniokids gathering on Lake Erie in Sandusky. It's the first weekend in August. The Meet Up planning thread is in The Lounge at the top.
Btw, we went to the Dells several times when i was a kid. We also visited Appleton and Madison. I LOVED Madison!
03-29-2008, 09:31 PM
I replied to one of your other threads but just realized I didn't give you an official...
Love the misunderstanding about giving birth at work...I used to work in an animal shelter. :giggle
03-30-2008, 09:12 AM
03-31-2008, 11:59 AM
Sorry I missed your post! But welcome! The surgery is daunting, but our little ones do so amazingly well! You have found a wonderful site full of support and wisdom!
03-31-2008, 12:21 PM
Hi - Somehow I missed your post. Just wanted to welcome you to this wonderful, informative and super-friendly site.
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