Experience with craniosynostosis?
Our eight month old has been recently diagnosed with unilateral coronal craniosynostosis. His head and face were always a bit asymmetric, but it became clear that he wasn't growing out of it - in fact it was getting more noticeable. We're working with Dr Sun (neurosurgery) and Dr Pomerantz (plastic surgery) at UCSF Children's Hospital, and have been happy with our experience there so far, but just to cover our bases we're scheduling a second opinion appointment at Stanford. We're probably looking at surgery in the next few months, since Dr Pomerantz prefers to operate somewhere around the child's first birthday. In the meantime, we'd love to connect with other families who've also dealt with or are currently dealing with craniosynostosis!
Jul 15, 2020
Parent Replies
Hello! I am a Pediatric Anesthesiologist at UCSF Benioff Children's Hospital in SF.
I'd be happy to chat if you have questions about the surgical period/anesthesia. It can be pretty stressful facing surgery for a young one, but things overall tend to go pretty well.
Angela
Our baby was diagnosed with sagittal craniosynostosis by his pediatrician at his 2-month checkup; we met Dr. Sun a few days later and had endoscopic surgery the week baby turned 3 months, followed by roughly 3 months of helmet therapy. He's almost a year now and doing great overall. We also met Dr Pomerantz but ended up not needing him to be part of our baby's surgical experience. Our surgery and followup visits have all happened at Children's in Oakland.
I know our situation's not quite the same as yours, but I'm happy to answer any questions you have -- please please feel free to contact me! Some highlights of our experience:
-- we were in the hospital 2 nights, one in ICU and one in the regular surgical ward. It was not a lot of fun, but it was overall quite manageable -- they provided a breast pump and a place for 1 parent to actually stretch out and sleep. We did have to share a room in the surgical ward which was a little rough. I have no idea how COVID may have impacted any of this stuff or how UCSF's practices are different.
-- the helmet was kind of annoying but not a big deal at all. The orthotist at Children's, Bobby Smith, is fantastic.
-- our baby has definitely had some 'after-effects' of his surgical experience; nothing major, but they're there. His motor skills are a little 'behind-the-curve' (he didn't crawl til 9 months and now at almost 11 months is juuust starting to work reliably on pulling up); he's had ongoing minor digestive issues that we suspect may be related to the antibiotics he got or just the general 'slow-down' the surgery put on his system; and his sleep was kind of a mess for months after the surgery (though he was also 3-4-5-6 months old, so I don't know that I'd even call that one a relevant correlation). Overall, though, he's a healthy, happy, round-headed kid :)
happy to talk more if you think it'd be helpful. The team at UCSF and CHO is fantastic and your son is in the best hands (quite literally: people fly from all over the country to have Dr. Sun do their kids' cranio surgeries, so can't get much better than that). <3
Our daughter also had unilateral coronal craniosynostosis and had surgery when she was 8 months old at Stanford. She is now 11 years old and doing well. We did get a second opinion at UCSF at the time, and were very happy with the teams at both hospitals, we lived in Palo Alto at the time, so Stanford was just closer for us. I think the care teams at both locations have turned over since our daughter's surgery, so I can't provide feedback on the doctors, but I'm happy to discuss our experience with you.