View Full Version : Another Baby after Craniosynostosis....
12-27-2006, 07:03 PM
This question is for all you parents out there that have had another baby following your child that had craniosynostosis. Did you have special tests run?
My OB's office just called and said they want me to regularly visit a Perinatalogist (sp?) as well as them during this pregnancy. Is this normal? When we went to genetic counseling after Austin's diagnosis, we were told that his cranio was not genetic and was probably from placement in the uterus (he was smashed up against my hip with the right side of his forehead). I have no problem being extra cautious with this pregnancy, but this was just dumped in my lap as there was no discussion of it during my visit earlier this month.
What should I expect?
12-27-2006, 08:18 PM
Ok with Amber I had to have level 2 ultra sounds 1x in every trimester and they measured her head and watched the growth very carefully. Thank god after the last one they told us she will not be born with Cranio, her head growth was perfect and there were no fused bones.
12-27-2006, 09:08 PM
I know it has been a while (Hello girls!:wink ) But I wanted to chime in on this. When I had my son I was seeing a perinatologist also. No offense but we never knew why. I asked him point blank if we could prevent cranio and he said "No". :umno Whats the point then? Whether he had it or not we couldn't stop it, just maybe prepare for it better.:thinking Good luck and hope all is well... :hugg
12-27-2006, 10:03 PM
I didn't see any one other than my normal OB with my second pregnancy. I was treated the same with both pregnancy.
12-27-2006, 11:30 PM
When my OB heard about cranio being genetic in my family, the office sent me to a special clinic in addition to my regular visits with them. This second place did a genetic consult and then regularly conducted Level 2 ultrasounds. If they had found the cranio in utero, nothing could have been done to fix it. I still went through it to possibly prepare myself. If nothing else, it was an excuse to get several ultrasounds covered by insurance. By the end, I knew for sure that Simon was a boy and was healthy in other respects. Also, if the cranio does show up in utero, it helps to prepare the OB for any possible complications during delivery due to the inability of the baby's head to properly mold.
12-28-2006, 09:58 AM
Aimee... That's how I feel, what's the point. Am I going to terminate a baby for having cranio if it is found... No way! Can it be prevented.... No.
Cindy... I agree, I don't mind being able to "see" my baby a whole lot more during this pregnancy, and all I have to pay is my $10 co-pay.
01-03-2007, 08:29 PM
Now see, one thing I was told was that even if the Cranio was noted inutero it wouldn't be for the last few weeks of the pregnancy (36-40), then, even if the decision would be to terminate, here anyways, it's not legal after 20 weeks and why would you if it's "fixable?"
I'm worried being pregnant again, not knowing Hubbies family history (He's adopted) he's terrified and said that he didn't want to have another. He can't go through what we did with Doodles again. So far, everything is going well, but what can we do? The only thing is the extra ultrasounds near the end of the pregnancy as Holly was born with it and the delivery was excrutiating!! LOL!! :pullhair So I believe just to ensure the delivery went okay, and there were no complications, I would opt for a C-Section. Holly came out with a bruised and swollen head and even though I'd had other kids Bigger (Jordan was 9lbs 11oz) she could have gotten stuck I still think.
It's so scary, but I'm so happy to be pregnant again and if "God forbid" we have another child with Cranio, I know I have all you wonderful women on hee for more support! :hugg
01-04-2007, 01:31 PM
Tracey--Mazel tov on your pregnancy! I hpe all goes smoothly.
When I was pregnant w/my second daughter, I had one level II ultrasound. Interestingly, when Kayla was emerging, my ob announced that all sutures appeared to be open. He said that he now routinely checks for this after delivering Eden, the only craniokid he's ever delivered. With eden, I had 3 hours of pushing and a forceps delivery. Kayla came out after 15 mins of pushing. It was so much easier! She was smaller (6 lbs, 1 oz), but Eden was only 6lbs., 6 oz. Good luck to you! I hope all goes well for both of you.
01-04-2007, 05:37 PM
Congrats Tracey...yay! I think the prego thing is getting contagious in here...STAY BACK GIRLS....LOL.
01-05-2007, 05:20 PM
Now see, one thing I was told was that even if the Cranio was noted inutero it wouldn't be for the last few weeks of the pregnancy (36-40)
This absolutley untrue. Ultimately, Callum was diagnosed with bi-coronal at 25 weeks. The word Kansas still disgusts us.
I agree, knowing only helps you prepare because nothing have would convinced us not to continue. This sort of information is good. In our books Callum is "fixed", he is advanced developmentally and physically. We only hope that continues.
01-05-2007, 10:16 PM
See I guess that's just where you get your information from. I got that from our old GP, the new one is now running regular ultrasounds on me to see if this one will also have it inutero. Just so that we can do the C-section rather than natural to put less stress on her.
I never trusted my pediatrician as the first time I saw her and mentioned the cranio, she said "Children aren't born with it, they develope it in the first month or so" she felt Holly had a tumor that was causing the bulging to her left side. :pullhair
We need so much more education out there on this subject don't we??
01-07-2007, 08:34 PM
Children aren't born with it??? Wake up and welcome to the new age of medicine, Doc! Bryson was born with ALL of his sutures closed - if he'd have waited a couple of months because some pediatrician didn't think babies could be born with it, he would have died.
As for extra diagnostic work with subsequent pregnancies, we just had extra ultrasounds through our regular OB with Zack. I was told that it was very unlikely that he would have it, since Bryson's is a syndrome with autosomal dominant inheritance, and he is just fine - no cranio. You guys are talking about "Level 2" ultrasounds and such - Zack was born 11 years ago, so I don't know what 'level' we had - we were just told "ultrasounds". I don't know if they had more than one level back then or not, LOL...
01-07-2007, 09:58 PM
We went to genetic counseling, but we were told the same thing. Not likely, but our chances went from 1 in 1000 to 1 in 100 of having another. I really didn't care. I didn't feel that we needed the genetic counseling either, but I had a different doctor with Danny and I spent much of both the initial OB appointment and the genetic counseling appointment explaining about cranio. So much for specialists! We did have the level 2 ultrasound, but that was it. The idea of doing surgery again wasn't enough to keep me from wanting another baby so I didn't put much stock in what anyone else's concerns were.
01-08-2007, 11:27 AM
Okay, sorry guys, I have to vent....
If I had a quarter for every time someone asked me why I'm having another baby because my last one didn't turn out so good, I think I'd be close to a millionaire. Most of the time they then ask if this baby was an "accident". I can't believe how rude people are, I feel like saying "Shut up and mind your own business".
This baby was definately planned, I had already been on prenatals for 3 months, and, if this baby is in fact born with cranio... we will deal with it. Austin's surgery was stressful and emotional but he is, and always has been, one of the loves of our lives and worth every second of stress and turmoil.
Sorry... I had to get this out
01-08-2007, 11:40 AM
Heather I know how you feel! Except most people say things to other people in my family behind my back. Like, "I can't believe they are having another one" or "Are they sure they can handle it if it happens again?" The worst being my mom when I told her we were trying for another said " You need to stop and think about it, do you want to take that chance? You had one "perfect" baby, David, and then Vance." What in the heck is that suppose to mean??? Sorry but I think Vance is just as perfect as David! I just tell everyone if the worst thing that happens is I have another one just like Vance I can't lose! Some people are just ignorant!!
01-08-2007, 11:59 AM
I totally agree Denise!
Hey, your due date is 5 days before mine. Do you have to have the Level 2 ultrasounds too? Are you going to find out if the baby is a boy or girl?
01-08-2007, 03:50 PM
Since my husband is in the Army I have to go to the military hospital, but I know they are going to send me to a civilian perinatologist for atleast one level 2 ultrasound. I am going to push for them to give me a referral so I can be seen there throughout the rest of the pregnancy. That is where I had Vance, and I felt so much more comfortable because they were more experianced to deal with Vance's cleft lip and feeding issues. We are going to find out what we are having, I couldn't make it without knowing! haha Are you finding out?
01-08-2007, 07:00 PM
Yes, we will definately find out if we can. I hear sometimes legs are crossed, but hopefully that won't be the case.
01-09-2007, 03:05 PM
Chris and I went through genetics counseling when I was pregnant. I was about to turn 35 and Chris had a brother who was born with treacher collins syndrome and died when he was 11 days old. I had an amniocentisis and the level 2 ultra sound at 5 months. All of that and they still could not have predicted the CS. They even told us that they wouldn't be able to predict the treacher collins until I was 6-7 months pregnant. Heather & Denise, I wish you all the very best. Chris and I have been talking about having another child. The only voice I pay attention to is one in my heart. You all are going to do great! I'm so excitied for you!
01-10-2007, 10:24 AM
I have had two babies since Mikayla and if I was rich I would have ten more! People said the same thing to me and I just said I didn't care. That usually got them to be quiet about it. If I had to do it all over again knowing what we would have to live through with Mikayla's surgery I would do it a million times. Mikayla is such a wonderful, smart, caring little girl. She wants to be a doctor that fixes heads when she grows up. I really think that she will help people with cranio someday in some way. Some people are just so dumb!
02-18-2007, 07:40 PM
I had my perinatal ultrasound last Wednesday and everything looks great so far. They even checked all the sutures to be sure they were open (although I believe Austin's closed in the last couple of weeks before birth). They let us know that the baby is going to be large (Austin was 9lbs 1 oz, born 12 days early) and that wasnt much of a surprise. They want to bring me back in for an EKG on the baby, I guess larger babies are more suseptible to heart problems but everything looks great in the heart so far.
Oh, and guess what... It's A Boy!! :adore
02-18-2007, 08:11 PM
Congrats on finding out what you are having! That's great that everything is looking good. =)
02-18-2007, 09:08 PM
I am so glad to hear everything is looking good! Congrats on another boy! Any names picked out yet? My ultrasound is on Tuesday, I'll let you know what happens!
02-19-2007, 10:18 PM
We've had one more after Matthew, Dora, and she has no problems whatsoever. And so far, neither has little Drayce, who is due 29 days from now.
03-16-2007, 02:40 PM
Is the new little one here yet Michael?
Denise, have you had an ultrasound where you got to bring home pics yet?
Here's our new little guy... I think we are naming him Braden
03-16-2007, 04:02 PM
How amazing. I love the ultrasound pictures. So many of you having babies, I am definitely getting the baby bug! No more for us tho., dh was fixed!
I like the name Braden too. What about you Denise? Any girl names yet?
03-16-2007, 09:34 PM
Wow! Not sure how I missed these updates. Love the u/s pics. I'm glad all looks well. You all are definantly giving me baby fever......I'm glad everything looks healthy!
Michael- How do you pronounce Dracye? (In my head I'm saying it like Race- with a D at the beginging?
03-21-2007, 12:01 PM
AWWWWW, love the ultrasound pictures Denise Congrats I did not know you were having another miracle :hugg ! Well as said b4 STAY BACK LADIES!....LMAO I am not pregnant as thought, my husband was so disappointed. I keep telling him we should wait another year so I can put Amber in Pre-K. I did the 2 or 3 kids home thing with a newborn :no not again if I am to give 1:1 loving to a baby I need the kids to be occupied for a few hours at school or something.
I know how you feel ladies about the are you crazy thing being the boys are autistic, I have 5 already, and Matt had cranio everyone thinks I am nuts for even debating another child but I don't care it's my decision and I am a very patient person :icon_mrgr .
Keep posted on the pregos girls!
03-21-2007, 01:29 PM
Sorry girls, not sure how I missed all of these posts!
Heather, I did get to bring home some ultrasound pics, I'll scan them and post them later today. The boys just loved them! Infact David wanted a picture of his baby sister, so they have one framed in their bedroom. I think Braden is such a cute name!
Kim, I think we are going to name her Savannah, but I'm still not sure! I have such a hard time with girl names! I am open to suggestions!
Thanks Josette! I say if you want another one, go for it! Not many have the patience to handle all that you do! I don't think wanting another makes you crazy, I think it makes you an amazing mother! I was the youngest of six and I loved growning up in such a big family!
06-02-2007, 07:27 PM
I went to my final ultrasound last week and all the sutures still appear to be open. The little guy is measuring large though, which is no surprise because Austin was a big baby too. The average baby is supposed to be 3.5 lbs at that point, and this baby was a little over 5.5 lbs already. Yikes!
06-03-2007, 11:03 AM
Oh, I love hearing all the updates. Keep 'em coming! I am happy for you all that things are looking good so far.
06-04-2007, 09:00 AM
Heather are you having a c-section or are the going to schedule an induction? Right now my c-section in scheduled for July 14th, they don't want to do it any later because they are afraid I will go into labor on my own. I guess that would be a bad thing since this is my 3rd c-section. At my last u/s the baby was measuring about a pound bigger, but that was a few months ago. They didn't seem concerned and I won't be getting any more u/s. I can't believe we are already at the end!!
06-04-2007, 09:34 AM
I do believe they are going to induce me on 7/12... but the specialists are recommending a C-Section because of his size. I told my Dr that I thought I could handle it, especially since Austin was 9lbs 1oz, and he passed through just fine.
Austin was born 2 days after I went in to be induced, so we may very well have babies on the same day! : )
It seems like it has gone by really fast, doesn't it?
06-04-2007, 09:10 PM
<TABLE id=HB_Mail_Container height="100%" cellSpacing=0 cellPadding=0 width="100%" border=0 UNSELECTABLE="on"><TBODY><TR height="100%" UNSELECTABLE="on" width="100%"><TD id=HB_Focus_Element vAlign=top width="100%" background="" height=250 UNSELECTABLE="off">I always wanted a big family. I now have to girls and would of loved to go for another but my husband and i are just so scared with everything that we have been thru with mandi. We say its all in gods hands lol
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07-14-2007, 11:35 AM
Well, he arrived at 11:36PM on 7/11 weighing 9lbs 2oz and 21.5" long.
I am sooooo proud to report that he has a perfectly round noggin.
I will try to post some pictures sometime this week.
07-14-2007, 12:42 PM
Congrats Heather!!! I am so happy for you! I can't wait to see pics!
07-14-2007, 12:49 PM
07-14-2007, 01:55 PM
CONGRATS!!!!!! I'm so happy for you and your family!!! :hugg
07-14-2007, 02:08 PM
'CONGRATULATIONS', Oh I cant wait to see a piccy i just love newborns xx
07-14-2007, 04:02 PM
Congratulations!!! I thought that you probably had him from the message I had seen on your myspace! I can't wait to see pictures! Oh, and you picked a great name! I can't wait to be done too!! Less than 2 days now!
07-14-2007, 05:36 PM
Congrats! Yeah on the perfect little head. Can't wait to see pictures! :adore
07-14-2007, 07:20 PM
I'll definately be thinking about you on Monday Denise. Wishing you a speedy recovery
07-14-2007, 08:24 PM
Congratulations - what a lovely name! So glad he's healthy and you're happy. My eldest is called Dillan, bit different but the same aswell.
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