Upcoming Surgery for My Son

[Synne]

Hi to everyone,

I've been lurking through these forums for a few weeks now, but decided it was time for me to share my story. I have a 6 month old (on the 29th) named James who was diagnosed with moderate metopic craniosynostosis at 2 weeks. He's scheduled for surgery on the 10th of April at our local Children's Hospital. From everything I've read and researched, I believe his was due to biomechanical factors like womb positioning and constriction. The midwife always said he was head down and I felt like my uterus reached its growth limit towards the tail end of my pregnancy. I was also 1 week overdue when I went into labor, and had to get a c-section after three hours of pushing since he was taking forever to come out. Little did we know it was because of his fused suture!
Needless to say, when the doctor said something was wrong with his head and surgery was imminent, I was absolutely devastated. I'm dealing much better with it now. I just don't want the surgery to change his personality or anything about him. I know it's for the best. I just hope there are no long-term consequences to getting it. Not getting it is unimaginable, I know. :/ He's an amazingly healthy and wonderful baby. He's on target development-wise and doesn't have any other health problems. We have his pre-op appointment next week. Are there any questions I should be asking?

Here's a few pics of him to get an idea of his condition:

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Any advice/comments would be greatly appreciated.

[MikeysDad]

I would like to formally welcome you to CK! You have a handsome young man on your hands there. As you stated, it is a very difficult decision--not only to make, but to deal with all the way up until the day of surgery. I wish I could tell you that it is all peaches and cream, but the truth is the journey is a little different for everyone. You have done the right thing joining this group. There is a lot of support here. I feared the same thing with Mikey. He, prior to surgery, was the happiest baby in the world. So easy to please and make laugh, not normal laughs but belly laughs--good ones! I wondered if maybe there was pressure on a certain lobe that perhaps gave us such an easy-going, happy baby! "What if he is cranky all the time after surgery?" "Will this take away from his disposition?" Were the strange questions I would ask myself. Luckily, the only change we have noticed is his fussiness due to the pain from surgery. We have to give him tylenol almost daily, and it has been a month now. Not sure if this is the norm, but for me I guess this would be a good question for the doctors. For you, maybe ask things like, "How much time do they anticipate he will be in the hospital? How long is the surgery, hours? What kind of care do I need to take afterwards? Are there alternative procedures available? Would they consider endoscopic?" Typically the cutoff for this is six months, but apparently different surgeons have varying opinions. I am not sure how much help this reply has been, but I would like to wish you the best of luck on your upcoming surgery. It is a roller coaster the entire time. You are going to second guess yourself, but making an informed decision and trusting your maternal instincts is the best you can do!

[jjmc123]

[AJ's Mommy]

Welcome to Cranio Kids!!

[Synne]

Thanks for the welcome! He's getting the traditional surgery, not endoscopic. It's with Dr. Cohen and Dr. Meltzer at Rady Children's Hospital. We have 12 days to go. He's a strong little guy that is always happy and laughing, so I hope he doesn't take it too hard. :)

[BabyGabey]

Welcome to CK!! I am a metopic mom and had all the same concerns about Gabe pre-op. I can attest to you that now 9 months post op he is still a happy, joyful baby and besides the helmet that he wears (we had endoscopic) you would never know he had surgery! Just hang in there the next 12 days are an absolute roller coaster of emotions... You can do this... Your little guy will do amazing and will be back to his happy self before you know it!!!! The attached pic below is Gabe the morning after his surgery and he still gave us some smiles..... xoxo

[Synne]

Awww, what a cutie! Here's another pic of him where you can get an idea of his forehead. He's waiting for the doc to see him.
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[China]

OMG! I love your last pic. Your baby is adorable!! Welcome to CK I am glad you found us. I am a mom of 2 metopic babies. Little ones are amazing and very strong. You little guy will do great! I know the waiting is very stressful but soon you will be in the other side. We are here for you.

[tammylh]

Aw... he is so cute!! Welcome to CK!

Good luck to you and let us know how everything goes. BTW, I'm in SD as well. :)

[*Jessica*]

Welcome to CK! Another Metopic momma here! Feel free to look at my album of before/during/after pics if it helps. Your little man is adorable! I have a softspot for the sweet metopics. My son had surgery almost 3 years ago and is doing great! Please let me know if you have any questions!