Hello- my name is Sadie, and I have been married to my wonderful husband, Anthony, for almost 9 years. Here is the story of our cranio journey so far:
We had 2 wonderful little boys, Ethan 4 and Gabe 2 1/2, and were almost out of DIAPERS. We had a summer garage sale and got rid of ALL THINGS BABY! I was scheduled to get my Mirena (5 year birth control implant) in a week so Anthony could take his time getting the big "V"......no more kidos for us!
Then came QUINTIN!!!!
I found out I was pregnant with Quintin after waiting to no avail for my monthly cycle to start (my gyno likes to put in the Mirena during your cycle so he can make sure you are not pregnant) HA HA JOKES ON ME!
Quintin Charles Decker was born April 17th, 2007 after a very easy delivery. However, the pregnancy was hard because Quintin was breech until 39 weeks and stuck firmly in my right rib. Luckily, Quintin flipped and delivery was induced to get him out quick before he flipped back breech! After two almost nine pound babies, I was SO thrilled when my little 7 lb 6 oz baby Quintin "slipped out like a greasy meatball!" (he was predicted to was 9-10 lbs!)
Here we are in the hospital...Me, Anthony, Quintin and my ObGyn (note my hubby flashing three fingers...thus baby boy #3)
We took our beautiful son home 2 days later and felt blessed that he was "normal!" However, I never felt quite right about the fact that I could not feel a "soft spot"....but the doctors at the hospital would have checked that out, right??? Surely they would have told me if there was a problem.
Quintin is such a happy and jovial baby. He started flashing huge smiles at 3.5 weeks old...we were amazed! He also started the loudest belly laugh at about 6 weeks old. Strangers would stop in amazement if he was laughing the the store! They would say, "He's really only 6 weeks old and laughing like that?" Here he is at 5 weeks old (left) and at 4 weeks old (right) with his brothers:
Then, Quintin spiked a fever of 101.4 F at 6 weeks old and was rushed into Children's Mercy Hospital here in Kansas City. After a spinal tap, urine analysis and several blood tests, it was confirmed that Quintin had meningitis....but we did not know if it was viral or bacterial (bacterial is the kind that can kill). After 2 days in the hospital we were informed that it was bacterial and that we would be there for at least 14 more days! He had antibiotics pumped into his IV in his head every 6 hrs around the clock. Here is my little trooper in the hospital:
Luckily for us, it was discovered that the bacteria found in his blood was a "lab contaminant" and that Quintin had the lesser severe viral meningitis. After 4 days in the hospital, we were so happy to take our little guy home!!
After about 3-4 months I started to notice that bulges were developing over Quintin's ears, and that his head was flattening in the back. Also, his temples seem to be sinking in more and more. Here is a picture of him at 5 mos and 6 mos (note the bumps over his ears and shadowing of his temples...also his head was growing WIDER!):
At his 6 month well baby check-up I asked Quintin's doctor about his head shape and lack of a soft spot. She assured me by saying, "I have seen worse...it's really not that bad. It's just from him sleeping on his back" and she followed up by saying, "his head circumference is getting larger, so I am not worried." I stated that, yes, his head was growing larger, but it was growing in the wrong directions. She did agree to send me a referral to a CFS just to make sure she was not missing something. My gut feeling was that something was wrong...my husband also secretly admitted to me one night that he, too, had felt that something was not "right" with Quintin. This was around Halloween 2007.
Also, a note....why didn't the specialists at the childrens hospital notice that something was wrong when he had meningitis? Quintin's metopic suture was already closed at birth and he had NO SOFT SPOT! Look back at the photo of him with the IV in his head....you know they had to be BLIND not to notice the lack of any soft spot while searching his head for a suitable vein for the IV insertion. UGGGGGG!
I did not make the CFS and CT Scan appointment until after Thanksgiving because I had been fooling myself that the pediatrician was right and that I had nothing to be worried about. But, I started "Googling" key words like "premature closure of the soft spot" and eventually found my way to CranioKids.org,as well as other craniosynostosis websites. It is on this very site that I confirmed that my worst fear was probably true...Quintin looked A LOT like the other metopic babies on this sight! My husband refused to consider that Quintin could have craniosynostosis, so for a month until Quitnin's Dec 11th CT Scan, I had only the comfort of the wonderful people on this site to rely on! I don't fault my husband...I'm sure it was very odd and unbelievable to him when I announced that I had "diagnosed" our son's condition on-line and that Quintin would need major skull surgery!! WACKO, I'm sure he thought!
Here are some photos of Quintin that I posted in late November here on CranioKids to get other parent's feedback on if he presented as metopic:
Dec 11th confirmed our worst fears. Quintin has a closed metopic suture and a completely closed soft spot. He would need surgery. Anthony was in SHOCK....I was sad, but had already dealt with the emotions of knowing Quintin needed surgery. Here are his CT Scans:
The CFS we saw here in KANSAS CITY has a lot of practices for the surgery I knew were not state-of-the-art from all of my reading on this site and others. In short, he wanted to do an older type of surgery called a Barrel Stave Ostectomy (SP??) as well as have Quintin wear a helmet for 6 mos!! I head read that there were better procedures where children did not lose as much blood (cranio vault)....and that ANY time that a full cranio vault surgery was performed that the helmet is never used. Rather, the helmet is used more for strip procedures and endoscopic procedures on sagital sutures.
SO, we decided to go to the best doctor we could find. After taking a poll here on CranioKids of who is the best surgeon to see, we decided to look further into Dr. Fearon of Dallas. My sister is a PhD and professor of Genetics at the University of Texas in Austin, so I had her do some "checking" into this surgeon for me and his published papers. I was also lucky that a good friend of mine is married to a renowned heart surgeon doing heart transplants at UCLA. He also looked into Dr. Fearon for me and said that he would choose this surgeon for his own child! That is all we needed (Oh...and about 100 hrs of my own on-line research!)
I sent Dr. Fearon some photos of Quintin, his CT Scan and a brief history via e-mail in mid December...and I had a personal reply within 12 hours!! We decided to use Dr Fearon and have a surgery date scheduled for Feb 19th 2008.
Quintin will start Procrit injections once a week for three weeks prior to his surgery (1st injection is in about 2 weeks from now, Feb 29) to help boost his blood quality and platelet count in hopes that he will not need a blood transfusion.
Here is a photo timeline of the changes in Quintin's head shape. I wish I had top-of-the-head view photos...but I did not suspect there was a problem until 5 mos old....and who takes "top of head" shots of their normal baby, anyway! LOL!
Anyway, sorry this was long...but I hope it is helpful to anyone who just found this site and is desperate, as I was, to see what others went through and how they learned of their child's diagnosis....as well as "signs to look for" in craniosynostosis. Remember, you are your child's best advocate....we always have to fight for our children!!!
Quintin may be our "surprise baby" and a lot of trouble, medically speaking...but he is SOOOOO worth it! I wouldn't trade him for anything.....not even a girl! LOL!!!!
_________________WooHooo!!! I can finally add SURGERY info!!_________________________________
Quintin had his surgery on Feb 19th, 2008 in Dallas with Dr. Fearon. After being sick with a bad cold, and having mucus sucked from his lungs 6 days before the surgery, Quintin was well enough to proceed. He lost a lot of blood during surgery, and needed some plasma to help his blood clot (our surgeon uses a "cell aver" that gives the babies back their own blood that was lost!!) Overall, it was a sucess!!!
NOTHING...I mean NOTHING can prepare you to have your child taken from your arms, or seeing them all swollen up and in pain after surgery! Everyone says this, but it is so very true that you will never be prepared to see YOUR child in this condition no matter how many "after" surgery photos you see.
Click here for a 5 min. montage video of Quintin's surgery and recovery:
Here are his surgery pics;
Quintin in the hotel bath tub the night before surgery
In the pediatric play room passing time before start of surgery
In the surgical waiting room right before thay took Q away for surgery....
As we saw Quintin for the first time right after surgery...and a shot of his incision:
A couple of hours post-op (sorry so big..will not resize)
Early the next morning (20 hrs post-op)
Holding Quintin for the first time and his first bottle;
48 hrs post-op and a view of the PICU room;
60 hrs post-op riding in the wagon on the pediatric floor...a favorite fro Quintin!
With mommy in the hotel trying to get some sleep. Also, Aunt Sara cuddling with Quintin in the hotel 72 hrs post-op (so mommy can try to pack!)
On the airplane ride home day 3 after surgery;
Back home with my bros! Afternoon of day 3;
4 days post-op;
5 days post-op;
6 days post-op;
8 days post-op;
Here is a picture from his 6 week post-op check up with Dr. Fearon:
Quintin is 6 mos post-op as of Sept 19th!!! I was posting some before and after pics of him as a response to another thread, so I thought I'd post them here to share how far he's come!
(all photos on the left are "before's" and on the right are "afters") I DID resize...but my screen still shows them HUGE! Whats up with this guys????
MY forehead is not all bumpy and wavy any more!!!
And my head is more round
My silly ridge is GONE!!
My temples are not "pinched" anymore!!
And, my head is nice and round....not flat like before!!!
BUT..the saga continues!!! I have learned that one can't shut the door on craniosynostosis on the way out of surgery. It appears it is a lifelong worry and concern for us parents! I am posting some pictures of Quintin that show some "bone loss" on his forehead. We will be taking Quintin back down to Dallas on October 3rd to make sure that no action is needed! (PLEASE...pray that no action is needed!)
NO ACTIO NEEDED!! WooHoo!!!! Quintin's bone grafts did disolve, but they will fill back in by themselves!!! Woo HOOOOO!
UPDATE: Almost 3 years post-op!
Quintin got glasses last April when he turned 3. Turns out he has pretty bad astigmatism in both eyes and needed corrective glasses. I was concerned this had something to do with cranio, but the drs have assured me that it is not associated. Poor little guy could only see large objects and everything else was blury. He LOVES his glasses and keeps very good care of them!
We were a bit worried about a year ago about Q's speech....or lack there of. I was hoping his speech delay was because he was a 3rd child. Quintin has made leaps and bounds in speech and has overcome any deficit. So, if your little one is doing the same thing, give them some time (especially is they have older siblings that will "talk" for them!)
Q seems to be on track all around...he can write several letters (ESPECIALLY "Q for Quinny!" and counts to 15. He will be 4 in April. I am only writing this to help any other mom or dad who may be wondering what their cranio child's outlook is for the future....he is 100% normal and no one ever knows he had a CVR/FOA. These kiddos are really amazing!!
For those of you that I know well, let me say I miss all of my dear friends and enjoy keeping track of you on FB. I have stuck to my goal of losing 75 lbs after the surgery, and keep working every day to keep it off. The surgery stressed me out so much that I let myself go! Not anymore..... :-) I encourage others to do the same after things die down after surgery....invest some time in yourself because it has been all about cranio for sooo long that you need to do something for yourself! (ok, I'll get off my soap box now!)
Anyway, here are some recent pics of Q
QUINTIN IS FIVE TOMORROW!!!