View Full Version : New, need advice please
11-30-2006, 03:31 PM
Well I found out this week that my 3 month old daughter Kaysa has to have surgery on her head because the bones have fused too quickly...the plates that have fused are the ones that go from ear to ear. I'm not exactly sure what this is called yet it was all very overwhelming. My dilemma is that I live in small town Montana and my Dr told me that he does the cranio surgery here maybe once every other month and explained to me that the surgery my daughter would need would be more difficult because of which plates had fused together. He continued to say that I am welcome to look elsewhere in bigger cities, but then he said I probobly wouldn't get as much personal attention, plus there is the extra costs of travel and such. I have checked around and found the craniofacial childrens hospital in seattle and they have told me they do surgeries like this 1-2 times a week. Seattle is 8 hrs away from me but that wouldn't be the issue as long as my daughter gets the help she needs. So my question is what would you guys do? Trust the small town yet says he's experienced dr in MT or Travel to the actual craniofacial hospital in Seattle? Also, What was recovery like for some of the smaller babies who had to have the surgery?
11-30-2006, 04:03 PM
I just wanted to say :welcome to this site! Your daughter has a beautiful name - Kaysa! I love it!
I know that the news that your baby needs surgery is very overwhelming. You will get a lot of information and help and support from this site. I know that my life seemed like a crazy roller coaster ride with my emotions when I knew that my son needed the surgery. But everyone on these sites is so supportive and helpful and they helped me thru.the whole cranio "journey".
To answer your question. I would at least consult with the craniofacial children's hospital in Seattle and then you could make your decision about the doctors. Once you meet with them face-to-face and take a list of questions for them to answer and then make your decision about the doctors. Personally, I would go to the specialists in Seattle because of their experience of the entire staff with children. We went to a specialist at a children's hospital and the staff was very personal and worked very closely with us. They worked with my son, he was 3 years old when he had surgery, to prep him for the surgery and workded with us closely. There are also the Ronald Mcdonald houses that you can stay at should be close to the hospital to help with the travel expenses.
My son was back to almost normal in two weeks. He was ready to play and run around. These babies are so strong and bounce back so quickly that you will be amazed. It is really a lot harder on mom and dad than it is on the little ones.
Many hugs to you. Hopefully, there is someone on here that has experience with the Seattle hospital! They could give you more info on the hosp. and doctors.
11-30-2006, 06:50 PM
Welcome to the group. I, too, would check out the bigger city hospitals... especially since he said your daughters would be more difficult.
I found a link to a childrens hospital in Montana that has a cranialfacial team. The info can be found at
Living in the Los Angeles area, we had 3 childrens hospitals to choose from. We actually chose the one furthest away from us based on our comfort with the surgeons. Your daughter should have 2 surgeons, a plastic surgeon, and a pediatric neurosurgeon.
Austin had surgery at 4.5 months, and after a few weeks of sleepless nights, he was back to "normal". As Kim said, they bounce back very quickly.
11-30-2006, 08:35 PM
Welcome! I'm glad you found us. This is a very scary time, but remember that it is fixable and these babies are soooo strong! Personally, I would get a 2nd opinion. For the reason stated above-- experience does count. Our team (1-2 per week) is a NS and PS that work together- but the entire staff- she uses just a few select anesticiologists (you'd think I could spell that by now!), the nurses are the same....they've all worked w/ these babies/scenarios before, so they know more of what to expect. On the flip- your doc could be an amazing surgeon who just happens to live in a small town......If you can meet w/ someone else, do...just for your peace of mind and to see what you are comfortable with. Your daughter has been diagnosed at a young age-- that gives you more time and options. Our NS wouldn't perform sugery until 4 months, some won't until they are 6-10 months...and surgery has been done later than that also.
On a personal note- Where in Montana are you? I grew up in Billings.......
11-30-2006, 08:37 PM
we wish you all the best for your baby girl.
everyone is right, the children to bounce back quickly.
lucas is almost back to normal, and it's only been two weeks since his surgery on nov 14.
the only real trouble were having are sleep issues.
we hope you find this site as helpful as we do.
11-30-2006, 09:45 PM
I am interested where in Montana you are too? Is Washington state the closest to you? I am in Utah and absolutly loved our doctor. He is very personal and very helpful to the parents.
I am so sorry that you have to go through this. You little girl will amaze you. My daughter just had surgery for left coronal. She did wonderful. I know that doen't really help your stress, just know you can vent to us anytime. We all understand what you are going through. You aren't alone in the way you feel.
11-30-2006, 09:54 PM
I, too, would get a second opinion. If your doc is expressing some hesitation, that would make me nervous. I know of someone who used that hospital in Seattle. Let me know if you are interested in possibly having her speak to you. She's not usually on these boards anymore, but i could email her and ask her. I'm sure she'd be willing to talk w/you. Good luck. She'll do fine, as all have said.
11-30-2006, 10:25 PM
Thanks very much everyone for the support...and to all those who were questioning...I am in Missoula, MT.
12-04-2006, 07:00 AM
Welcome to the group! I'd definitely go with someone who has more experience. We were lucky enough to have a very experienced team practically in our backyard (20 minutes away), but I know some people who travel hundreds or thousands of miles for good care. (One friend lives in Vermont and her child's surgeon is in Texas...that's the doc they liked best, so that's where they went.)
You asked about how the little babies do - they do great. My son had his first cranial surgery at 3 weeks old (his was a pretty extreme case), and he really amazed me at how well he did. When he was a little older (4 mo, 10 mo) and had more cranial operations, he would be back to sitting up and playing within around 5 days, and would be back to normal in a couple of weeks, easy. But he would be doing really well even before he was back to normal.
Your daughter will amaze you at how well she handles everything - and you will find that the worst part is all the fear and stress that leads up to the surgery. After it's over, there is sort of a calmness and you're able to breathe again. :)
12-09-2006, 10:02 PM
I live in Coeur d' Alene, Idaho which isn't very far from you at all. Have you looked in to getting the surgery done in Spokane, WA? That is where we are getting it done...it's not near as far as Seattle. We are seeing Dr. Gruber (here is the page about him... http://www.shmcchildren.org//index.php/physicians/59 )
My daughter is only 2 months old right now and she will be having the surgery on January 8th at the Sacred Heart Medical Center Children's Hospital. Maybe you could look in to having your daughter's surgery there also since it is a lot closer to you than Seattle. =) I wish you the best of luck, and my thoughts and prayers are with you.
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