Sydney's Sagittal Story

[JenniferP]

Our youngest daughter, Sydney, was born on July 1, 2008, at 25 weeks gestation, weighing 1 pound 11 ounces. Just before her release from the NICU, at about 3 months old, she was diagnosed with sagittal craniosynostosis, and we were referred to Dr. Dauser (NS). We saw Dr. Dauser and scheduled surgery at Texas Children’s Hospital. We had to wait until she was at least 8 pounds for surgery, which wouldn’t be until January, when she was about 6 months old. In the meantime, I began researching online, and discovered there are doctors doing the same type of surgery with a “less invasive” endoscopic approach. This definitely sounded less scary than the ear to ear incision our current surgeon was planning to do. We live in the Houston area, and decided to see Dr. John Teichgraeber, to find out more about the endoscopic approach to surgery.

When Sydney was 6 months old, Dr. Teichgraeber (PS) and Dr. Baumgartner (NS), performed a strip craniectomy, using the endoscopic technique. Sydney spent 3 nights and 4 days at Children’s Memorial Hermann Hospital. Her surgery and recovery went smoothly. After surgery, she wore a helmet 23 hours a day for 3 months.


Sydney will be 3 years old on July 1, 2011. There are two “soft spots” in her skull now, and we can see pulsating movements in one of the spots. Last week, she had a 3D CT scan of her head, and results show gaps in her skull. We have reviewed the scan with Dr. Teichgraeber, and he has recommended surgery again to fill in the “soft spots”. Sydney is scheduled for surgery on August 9, 2011. They are planning to shave off bone chips from the surrounding skull to fill in the spots, and then cover them with absorbable plates.


At this point, we are trying to get a second opinion regarding the repair of the “soft spots” in our daughter’s skull. I called Dr. Jimemez’s office in San Antonio, but they will not see Sydney until August 24^th. We are on a list to be called if they have a cancellation before her scheduled surgery date (Aug. 9^th). I have also called to schedule an appointment with Dr. Hollier (PS), who works at Texas Children’s Hospital, but have only been able to leave a message, and they have not returned my call.


I have posted Sydney’s story in hopes that someone else here might have experience with this issue. Does anyone else have a child who has had surgery to fill in “soft spots” in the skull, following previous surgery? Thanks so much for reading Sydney’s story, and I would appreciate any insight or information you might have to help us.

[Janet]

Does anyone else have a child who has had surgery to fill in “soft spots” in the skull, following previous surgery? Thanks so much for reading Sydney’s story, and I would appreciate any insight or information you might have to help us.

If you look on my profile you'll see a CT album of my daughter she had a CVR in Sept 2007 but her skull never healed properly. She is 4-1/2 years old. We are waiting for the date that she will be having surgery to fill them in. At sick kids in Toronto, they use titanium plates, she is also having a custom made implant out of PEEK material to help with some bone resorption, it'll help contour her forehead.

[InfinityRogue]

Welcome! I don't know anything about this condition as my daughter has just had her surgery. But, I'm also in Texas and we used the Dell children's hospital in Austin. Maybe contact them to see if they'll see you before August 9? I was very pleased with their work and loved the hospital. Let me know if you want their information. Good luck!

[JenniferP]

Thanks so much for your replies! Janet, Sorry to hear your daughter needs another surgery. Thanks for sharing her photos. I am finding there is more than one way to "fill in the holes". I have heard of surgeons using titanium plates, but ours does not. I am not sure exactly what the absorbable plates he uses are made of. I would definitely like to get a second opinion before following through with this surgery.

Claire, I would love to have the contact information for Dell Children's Hospital in Austin. As of now, I still do not have an appointment to get a second opinion before her surgery date (Aug. 9th). Thanks again for the help!

[InfinityRogue]

I sent you a message with the info. Good luck!

[jjmc123]

My son just had a 2nd surgery at age 4. His wasn't for holes though, his was because his head shape reverted back and needed a 2nd CVR. There are so many different methods that can be used to repair our little one's skulls. You need to go with the dr that you feel the most comfortable with. Our surgeons are recommending my son have a 3rd surgery when he's older to put in a plastic plate over his right temple. The plate gets absorbed into the bone. I don't know much about it though since the surgery, if it does happen, won't be for another 7 years. What I can tell you is that the kids do surprisingly well having surgery at ages 3 or 4. I thought it'd be a lot harder than when my son was baby, but I was happily wrong.

[Janet]

You are correct, different surgeon's use different methods, I don't think one way is better then another, as long as the end results are the same, making sure your child has a solid skull.
Best of luck, please keep us updated.

[Sophia's_mom]

Hi Jennifer and welcome to CK. I am so very interested to follow your Sydney's story. My daughter also had the endoscopic surgery done and has one open soft spot left at 2 years post op. We have been thru multiple CT's and MRI's and the final judgement from her surgeons is to wait and see. Her open spot is only about the size of a dime and sits right below the front scar line.

Our team is hopeful that the spot will eventually close on it's own and not require them to repair. If it does not the plan is to lay down a layer of titanium mesh over the spot to provide the protection and encourage the bone to fill in over it.

Our PS, Dr. Alex Kane, has left St. Louis and moved to Dallas (http://www.childrens.com/patientsfam...es-dr-kane.cfm) we consulted with him via phone when this was discovered and have followed up with our NS who remains in St. Louis. At the time this presented neither of our surgeons had ever heard of this happening and also consulted with Dr. Jimenez in San Antonio, as that is who pioneered the endo approach and who they trained with at the Univ of Missouri. He had also never heard of this happening, we were told we were the only case known to any of them.

I would be interested to hear what Jimenez has told you and what is being recommended by his office. I'm so scared that my Sophie's soft spot will not close on its own and we will have to face another surgery. And I'm so sorry that is the spot you are at now!

[JenniferP]

Thanks so much for all of your input! I have read your kids' stories and viewed pictures. All of them are just precious!

Cindy - Thanks for the reassurance, as I have been thinking surgery will be harder on a 3-year-old than an infant. I am glad to hear your son did so well!

Claire - Thanks for the contact information for Dell Children's Hospital. I contacted them this morning. I was not able to get an appointment with Dr. Kelley, but they scheduled Sydney to see Dr. Harshbarger on July 21st . I also got a call back from Dr. Hollier's office with Texas Children's Hospital. We have an appointment with him on Aug. 2nd. I am feeling better now that we have a couple of appointments scheduled to get another opinion.

Tessa - I am sorry to hear that your daughter is in a similar situation. Sydney has a soft spot about the size of a quarter on the top of her head, where we see pulsating. There is another smaller spot on the back of her head. Did your doctor say how long he wants to "wait and see"? Our doctor always said when Sydney turned 3 he would be ready to do something. I would love to get Dr. Jimenez's opinion, but we are still stuck with the Aug. 24th appointment with him for now. We are on a list to be called if they have a cancellation, but no call yet...

As I mentioned before, Sydney's first surgery was done by Dr. Teichgraeber (PS) and Dr. Baumgartner (NS) in Houston. These two have worked together for 17 years, but Dr. Baumgartner is moving to Florida at the end of August. This is why we have her surgery scheduled for Aug. 9th.

Thanks again for all the help! I will keep you updated.