I used to like our pediatrician, until she called my child a Klingon.
Yeah, that really happened at our appointment last Thursday.
But it's not all fun and games and future Trekkie conventions. We heard the words parents never what to hear: "You're going to have to have a specialist look at this."
Baby Girl has a ridge running vertically down the middle of her forehead. I always noticed it but never thought much of it. Apparently I should have. Based on what the doctor said and what I have researched, I feel it's likely that Baby Girl has craniosynostosis. Specifically, trigonocephaly otherwise known as metopic synostosis.
When she first told us I for some reason totally disregarded it. My baby is totally fine, I thought. That's just her skull. But wait, people don't normally have big ridges on their foreheads do they...?
But once Hubby started freaking out, so did I. So I did what any neurotic parent does and googled the shit out of it. So when you're born the different pieces making up your skull are separate to allow your brain to grow rapidly and then the different bones fuse at "sutures" (the point where two plates meet) at around age two. Sometimes one or more of these sutures fuses prematurely or even before birth. Being that Baby Girl has always had this ridge it seems that hers would have closed before birth. Now granted, we have no confirmation that she actually has this but I am pretty darn sure.
So then comes the doom and gloom. Most children who have this condition need surgery to correct it. Surgery is done on the skull to separate the parts that have fused and reconstruct the skull properly and to allow for growth.
So surgery. On baby's head. Wonderful. Specialist. Great.
After many hours worrying, crying, and googling, I'm trying to feel optimistic. Her head is not misshapen besides the ridge and she is developing just as she should. Still don't want someone sawing my baby's skull apart. The pediatrician's office told me it would take months to get an appointment with the specialist. Thank God it didn't, the appointment is Monday.
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Hi, I'm a lurker. A little boy that goes to my church has that. He case was pretty bad and it didn't get recognized until he was older than usual for that diagnosis. I'm not exactly sure why, but the local media even ended up doing stories on the family. I know it's going to take them several surgeries to 'fix' everything, but he always seems happy and healthy. I hope that her drs are good and her treatment is minimal. And don't be afraid to ask questions and get a second opinion if you aren't sure.
ReplyDeleteWow...that's concerning. I'll be lifting you and Baby Girl up in prayer. And your doctor sounds like a jerk...I can't believe he actually said "Klingon". I hope the appointment with the specialist goes well.
ReplyDeleteOh wow, I'm so sorry. I'm glad you were able to get a quick appointment with the specialist. I'll be praying that you get encouraging news from them.
ReplyDelete(((BIG, BIG HUGS)))
ReplyDeleteI am so sorry that you're having to deal with this, and right now when so much else is up in the air for you. You and Baby Girl are, as always, in my prayers.
Though obviously not on the same level as surgery on her head, it stresses me incredibly to know that sometime in the future, P will likely have to have surgery to correct her umbilical hernia. I know how I feel about something that the docs call 'minor', so I can only imagine how you must feel. Wish I were there to hug you in person. :)
PLease let us know how Monday's appointment goes...I'm believing for the best possible news!
Oh my! You are in my thoughts. Hang in there and I am super glad the specialist will see you immediately. No need to hang out on google for months.
ReplyDeleteyikes! that super super scary and definitely something you dont need in your stressful life right now. i'll be praying this turns out OK and it isn't anything that needs major major surgery.
ReplyDeleteSorry things have been so crazy lately. Good, good news that you were able to get an appointment with the specialist so soon... Hopefully everything is okay with Baby Girl!
ReplyDeleteMy niece has the ridge too. My mom used to sit there and try to freak my sister out over it. Told her it wasn't normal. She should get it looked at. Etc. I don't think she ever did. My niece is just fine. She is 11 years old now, completely normal and a bright child. After my mom freaked my sister out, my sister started looking at other people to see if she saw anyone else with it. When you get a chance, check out Jul.ia Rob.erts' head. She totally has it.
ReplyDeleteAt any rate, it never hurts to get it checked out with a professional, just to be safe. I hope that I was able to ease your fears, even just a tiny bit. I hope there isn't anything to worry about with your daughter, and that surgery is not required.
Try to stay sane.
*hugs*
I hope that you are able to remain calm until Monday. I don't know if you are still following my blog (I went private), but we were sent to a geneticist, who said that too many of our doctors have overreacted, and that they need to calm down. So, I take it that your ped is just a ped, and not a specialist on head conditions. Hopefully, they are fretting for nothing. It really is amazing how much more knowledge and education the specialists have. B's opthamalogist was worrying us about several genetic things, and after seeing this geneticist, he brushed them off within one minute. One minute! So, I hope and pray that this is the case for you. If not, I am so sorry. It will be a difficult road, that you will get through, but let's not go there until you see the specialist. (Easier said than done...I'm like the epitome of the pot calling the kettle black!)
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