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BABY HAS BIRTH DEFECT & needs surgery to fix it || Harrison’s Craniosynostosis Journey

BABY HAS BIRTH DEFECT & needs surgery to fix it || Harrison’s Craniosynostosis Journey


Oh big stretch Hey boogers Look how handsome you are. Hey what ya doing? Yeah so today is the day that we are taking Harrison to go get his CT scan to see what We can find out about his head. So let’s go Look at the cute little hat on your head Yeah, look how cute this is We made it to the hospital Gonna go walk down the hallway to Go get his head checked out. The last time that I was here was when I was in college and I actually used to volunteer here Yes, they have totally remodeled the place It’s been a long time since I’ve been here So I got off the phone not too long ago with Harrison’s doctor and He confirmed that he does have sagittal craniosynostosis and He gave us a phone number to call for the pediatric neurosurgeons office to Get an appointment set up to go have him to go talk to the neurosurgeons down there at Primary Children’s so Just waiting for a phone call back from then to get an appointment scheduled but that is what is that’s what we’re currently waiting for right now, but I’m Still in shock. I had a feeling that he had sagittal cranio But you know until the doctor actually called and said yes, he has this, you know it was just kind of like not necessarily a blow but just scary No video You’re going to wake the baby up. Oh well Yep, how do you feel about about it? You’re not helping I’m just just Harrison talk. Here’s Harrison talk. Yeah, so he learned a new thing the other day learned how to blow raspberries I’ll see if I can try to get a Video of him doing it, but he’ll just sit there and with his lips and its really cute But how do you feel about this Diagnosis he got diagnosed Needs to be done. Sucks, but it’s better for him in the future. Yeah And its more common than you think In a sense like one out of every 2,000 to 3,000 babies are born with it, so It’s not you know as common as like heart conditions are because that’s one out of every 100 babies are born with heart conditions, but So yeah, it’s more common than we know but you know not as not as common. It’s still considered a rare rare disorder Regardless he’ll have to have surgery For it so now the next step is just figuring out what surgery he’s going to have to have if it’s supposed to be The endoscopic or if it’s going to be the complete The complete reconstruction on his skull so That is the next step. So we’re not able to schedule the neurosurgery appointment today because the person that we need to talk to is out of the office and They said that they would give me a call on Monday to get all that scheduled so we should know next week on Monday when we can get in and Talk with the neurosurgeons and start talking about getting Hairston scheduled for his Appointment so I’ll keep you guys updated when we get to that point so in my last video I talked a little bit about what craniosynostosis is and I’m gonna go over it a little bit again for you guys. Just so to kind of give you a little bit of a refresher but it’s where the baby’s sutures at the top of their head fuse prematurely and so when a baby is born they have Sutures or open spots in their skull it helps them move through the birth canal so that’s why when you see a baby after they’re born they have abnormal shaped heads When they fuse prematurely it Makes it so that the baby’s skull isn’t able to Conform and move throughout the birth canal and then also – it starts to create growth restrictions within their skull Harrison has what is called the sagittal cranial synostosis, which is the suture at the top of his head So he has the soft spot right here at the top But then the opening the sutures that run from that soft spot all the way back to the back of the head where the sutures the very Back sides that come up at the base of the skull. They kind of come up at like a V angle that entire suture from the front of his head all the way to the back is closed is fused that has created his Football looking head where it’s really long and narrow at the top and then at the very back of his head it kind of bulges out and kind of comes to a point and so the only option for them to fix that is surgery and There’s two different types of surgeries I don’t know which one he’s going to be eligible for we’ll have to see when we go into his neurosurgery appointment see what surgery he can have But the two different ones are the endoscopic one where they go in and they just do a slit at the top of their head and they move remove portions of the bone so that They can like the skull can open up and then they it can grow and fuse back together again when it should I’ve read that surgery is more suitable for younger babies I’ve read that it’s suitable for babies up to three months But then I’ve also read that it’s suitable for babies up to six months. The other option is the complete Remodel they call it the CVR the cranial vault reconstruction That’s the one where they make a zigzag incision from one ear to the next all the way up to the top of the head and then they peel the skin back and remove the top portion of the skull and reconstruct it that way with dissolvable screws and plates and So that one is the more That one’s more invasive and that one requires longer hospital stays and it’s a bigger scar and a bigger surgery. And so he’s Right in that middle age between them He’s four months old. So, you know, he might be eligible for the endo or he might not and have to do the CVR one The main difference between the endo and the CVR is the endo the endoscopic surgery the babies wear The moulding helmets they wear those helmets for about a year because they They have soft spots and so their head isn’t completely fixed after surgery so they wear the helmet for the next year so their head can You know mold back together the way that it should Whereas with the CVR the complete vault reconstruction That one is done. Their head is remodeled 100% or you know, essentially 100% right after surgery is over so they don’t have to wear a helmet and And so the reason why it’s more Invasive is because it’s a longer surgery. They don’t have to wear the helmet They have the plates and the screws they keep their head together. So We’ll eventually find out next week what option he gets so I guess we’ll wait and see for that [background music]

2 thoughts on “BABY HAS BIRTH DEFECT & needs surgery to fix it || Harrison’s Craniosynostosis Journey”

  1. My heart is with your family! I am here for your needs. Cleaning, order food, helping with laundry.
    Anything. Prayers

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