March 2014 Moms
Options

craniosynostosis & late intro (kinda long, sorry)

Well ladies, I joined TB a while back,but never really gave an intro. I have posted a few comments, lurked for a while, and posted the LO's pics on HDBD. So, I apologize if i'm going about this the wrong way, but I just have a short attention span I guess,lol. I'm always busy, so I haven't found time to really intro myself properly, but I figure now's the time, since I've found out some news about my LO.

First, intro (short as possible, I promise): I'm 34, married for 14 years to my awesome H. We have 4 wonderful sons ages 9, 11, 13 and 7 months. That's the gist of it.

OK. Here goes.DS4 has been officially diagnosed with sagittal craniosynostosis. We found this out just yesterday. For those of you who are unfamiliar with this (I'm guessing most of you),it is the premature fusion of one or more sutures of an infant's skull. This all started when he was around 4months old. Actually, tbh, I have always thought that my baby's head shape was odd, but dismissed it b/c all my babies were big and had rather big heads, lol. I hoped maybe I was just being paranoid, and that his he would "grow" into his head, which had more of an elongated shape, instead of round, so I didn't say anything until his 6 month checkup, and was then x-rayed, and sent to a cranial specialist. Now we've set up a date for surgery just 6 weeks from now, and even thoughI pretty much knew that was going to happen, I am freaking out thinking about blood transfusions, anesthesia, incisions, all on my little baby.

So, I know this is a long shot, but I was wondering if anyone has gone through anything similar? Or I guess I may just need a few words of comfort. DH and I don't have any decent family to lean on for support, so this will be a tough couple of months to get through.

Thanks - a worried momma.

Re: craniosynostosis & late intro (kinda long, sorry)

  • Options
    No experience :-/ but welcome (officially) and I'm sorry you're going through this. My son has hypospadia and has to have surgery in November, and that has my stomach in knots. So I can't imagine how you're feeling with something much more serious and complicated going on. Hugs to you.
  • Options
    Thanks yeah its kinda rare. I've found a support forum, but its a pain to post anything on there. GL with your son's surgery. Hugs back!
  • Loading the player...
  • Options
    My son does not have that, but he has had serious surgery. He had open heart surgery at 11 weeks and corrective surgery on his penis at 5 months. I completely understand the fears. Our children are so incredibly resilient. They handle the surgery better than we do.

    Feel free to vent. I find a lot of comfort in online support. IRL I have to be strong but online I can say how I really feel. Good luck!
  • Options
    Yes, my son had sagittal also!  I was getting level 2 u/s's because of thyroid issues, and they suspected at my 32 week u/s that it was possible and then confirmed it at 36 weeks.  You could see the elongated head with the pinched temples clearly in the u/s.  Because we found out so early, we were able to have him have surgery at 8 weeks.  He had a wide strip craniectomy which is less common.  It's more invasive than endoscopic and less invasive than a CVR (which I'm assuming your LO might be having at his age?), but I was happy we could have it done early and he didn't need helmet therapy.  It was so stressful and emotional leading up to it, I never mentioned it on here, because it was hard to even write about, I was such a wreck.  But he did so great.  We were in the hospital for four nights.  He didn't need a transfusion, and he recovered really well.  His head looks so great now.  I didn't realize how funny it looked at the time, but it's such a difference now.  His hair has completely grown over his incision so you can barely see the scar.  It was definitely the hardest thing I've had to do as a parent so far, but babies are so resilient and I'm glad it's behind us.  Please let me know if you have questions or want to see pictures.  I'm happy to help!
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • Options
    As for scars, I can tell you that I can barely see Will's chest scar. It is just a tiny thin white line. He has chest tube scars that are more obvious since they are jagged. His chest is a bit ridged, but otherwise I don't think people would even notice he has had major surgery. It's amazing how quickly that baby skin heals.
  • Options
    No experience :-/ but welcome (officially) and I'm sorry you're going through this. My son has hypospadia and has to have surgery in November, and that has my stomach in knots. So I can't imagine how you're feeling with something much more serious and complicated going on. Hugs to you.
    I have no real life experience with craniosynostosis (other than knowing what it looks like on a prehistoric skull which doesn't really help you much OP, sorry). I hope everything goes smoothly and please, keep us updated!

    @stephbrim24 J has mild hypospadias too. His surgery is in about three weeks. I know it's not a major operation but I'm still nervous about it.
    image
  • Options
    Praying everything goes well and welcome.
  • Options
    Welcome Op!  Thoughts for you and your lo! 


  • Options
    I should have scrolled down before I posted above. DS2 has to go in for X-rays of his skull since the pedi said his soft spot is really tiny and his head growth has slowed slightly. Freaking out as this is the first they have noticed it and his head is normally shaped. I have noticed that his soft spot was small compared to DS1. I'll keep you updated and please keep me updated.
    Daisypath Anniversary tickers Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • Options
    Thanks everybody for your prayers and hugs! This is the first surgery for ANY of my babies, so needless to say I'm a bundle of nerves regardless.

    @babycaps‌ thanks! I've met the surgeons and asked some of those questions, but you gave me some good ones that I didn't ask. I'm def gonna ask those when he goes for his preop appointment.

    One thing that gets me is that this condition is usually noticed on a u/s or at birth. No one at his pedi office said anything, even though they measured his head each time. I know it's uncommon, but I wish this was noticed earlier, for whatever reason.
  • Options
    I think it's actually relatively uncommon to be found on u/s because they wouldn't be able to catch it at the anatomy scan and many people don't have further u/s's.  The pediatricians who were there at delivery had never had a baby diagnosed through u/s before.  It was kind of a mixed blessing to find out that early.  It made those last weeks of pregnancy and early weeks of his life very stressful and emotional, but I was glad that we were able to have things taken care of early and have it behind us!
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • Options
    @MA&CB‌ I pm'd you earlier. I'm not trying to rush your response or anything, I just wanted to make sure it went through. This tablet ( or maybe it's me, lol) is glitchy at times.
  • Options
    @mommyginab I pm'ed you back and emailed you pictures earlier, let me know if you don't get them!
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • Options
    Welcome! T&P are with your LO and family! I have no experience, but loads of support to give you. Stop by anytime you need it!
  • Options
    @mommyginab‌ I'm a feb mom and my son has cranio.... I pm'd you

    Baby Birthday Ticker Ticker 

    Baby Birthday Ticker Ticker

  • Options
    @kaking78‌ - ugh good luck with the procedure. Ours is in November. What's sad is the specialist said if the normal doctor in the hospital hadn't started the circumcision before noticing it and done the cut the way she did it, it's so minor that he wouldn't have needed the surgery. But now the circumcision has to be finished anyway so he'll correct it.
  • Options
    Good news on our front. DS doesn't have craniosynostiosis. His skull has not fused yet so he still has space to grow. They will keep an eye on his head measurements but it was good news overall.
    Daisypath Anniversary tickers Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
This discussion has been closed.
Choose Another Board
Search Boards
"
"