Sagittal Synostosis/Cranial Facial Reconstrution: Our Story

This post is for all the parents, family members and friends who are Googling “Sagittal Synostosis” for the first, second or hundredth time. This is our story of our baby girl’s journey through Sagittal Synostosis:

The first thing a parent does when they think (or is told) something is wrong with their child is grab their laptop and start Googling.

Google is a wonderful thing but when you search the words “sagittal synostosis” or “fused ridge on skull” it isn’t so wonderful.

The Google Images are terrifying, heart breaking and scary as hell.

After I stopped crying, I started looking past the images and started clicking only on the medical websites and blogs. Both calmed some fears but reading the blogs of other parents who had children diagnosed with Sagittal Synostosis brought the most comfort. All their children were fine. All the moms were amazed by the quick recovery. The Sprik Family blog was great because it had lots of photos through out the recovery. The Marcoftfam blog was helpful too.

Because those blogs, and a handful of others, we are writing this post. We are writing this as a thank you to the families who took the time to blog through the scary process and bring hope to all the future parents who Google “sagittal synostosis” and “fused ridge on skull.” We are writing this for all the parents and families of little ones who are just now, for the first time, Googling those scary & hard to spell words.

This is our story.

Our daughter was born July 28, 2010. She was beautiful and a perfect 8lbs 1oz. We named her Elise after my Great Great Great Grandma who came to America on a boat from Norway but that is another story for another time.

At birth her head look slightly misshaped, but most babies look a little rough around the edges after they are born. Both our boys’ heads were elongated at birth but grew normal within a few weeks.

At her 1 week check up with her pediatrician she didn’t notice anything or say anything.

At 2 weeks Elise still looked elongated and the “ridge” on the top of her head was becoming more apparent. The ridge ran right down the center of her head where you would part her hair for pigtails.

At 4 weeks I took her to my midwife for a well check. She suggested calling our pediatrician and making an appointment as soon as possible. She wrote down the words “fused sagital suture” on a scrap piece of paper. I called and made an appointment as soon as I loaded all the kids into the car. I got an appointment for the following day.

I spent the night Googling and crying.

The next day I took her in and the Pediatrician told us that it did feel like something was different and she gave me the number to Dr. Wood at  Gillete Childrens Hospital. She told me that she didn’t know a lot about sagittal synostosis but that we should keep and eye on Elise for brain swelling and that we should keep her on her back and prop her head straight (while lying down she couldn’t keep her head straight forward it would immediately lean to one side) so that she wouldn’t “deform” the shape of her head any more than it already was.*

In order to keep this post from getting too long I won’t go into the raw fear that came with the Pediatrician telling me to “watch for brain swelling.” Let me just skip to the part where Gillete couldn’t get us in for a month and  half. I couldn’t wait a month and a half so with the encouragement of my mom, I called Mayo Clinic. Mayo was able to get us in two days later to see both a Neurosurgeon and a Plastic Surgeon.

*I am not a doctor, I can only write about our own specific experience. Please do not take this as a truth for your baby, but in our daughter’s case, we were assured within seconds of meeting her Neurosurgeon that there is no need to worry about brain swelling and the Plastic Surgeon added that propping her head so she rests on the “nub” would make no difference. I know our Pediatrician was only giving out the only advice she knew to offer but she was wrong and for a week straight I was terrified of brain swelling and neurotic about keeping Elise’s head resting on her nub to the point of making her uncomfortable. Talk to your doctor about both of these things. If they seem unsure ask for another opinion. There is no need to be terrified for no reason. Get the facts right away. This is scary enough with out adding more fear.

If you live anywhere in the Mid West, Dr. Clay and Dr. Wetjen of Mayo Clinic were our doctors. They are incredible. They both confirmed on our first visit/consultation just by feeling her head that she did have a fused Sagittal suture. I was surprised to learn that the Plastics Doctor, Dr. Clay, was the main surgeon in the procedure. The Neurosurgeon, Dr. Wetjen and his team, scrubbed in and were there to assist in the surgery to make sure that her brain stayed safe. The surgery was scheduled for early January. I took Elise back to Mayo a week later to get an MRI.

Fast-forward to December. I get a call and the surgery has been pushed back until February 23rd 2011 with pre-op appointments on the 22nd. They pushed back the surgery because the latest studies showed that if the surgery was done to early the skull was still to soft to hold the screws in place resulting in the need for further surgeries. She would be 5 days from turning 7 months old.

Fast forward again to Feb 21st. Packing.

Things you will need or should have with you:

  • something to pass the time during the surgery. We handed Elise over at 7:45am and didn’t see her again until a little after 1pm. That is a long time.
  • comfy clothes to hang out in the hospital in. I was in pajamas and workout pants most the time. Be comfortable because hospitals are not.
  • as a gift we received kimono style onesies. these were great. we didn’t have to worry about pulling anything over the head dressings. Hospitals can be chilly.
  • baby legs- for the same reasons as above.
  • camera. you will want pictures. it is hard to see your baby in pain but you will want the photos later- i promise. At the very least some day your baby will want to see the pics of their wicked scar!
  • breast pump if you are breast feeding. Elise had a hard time latching on when she was at the peek of her swelling. She was only able to feed with a special preemie sized nipple.
  • Formula and diapers. The hospital will try and provide these but at an extreme cost and lots of insurance companies will not pay for them.
  • baby comfort items for baby. We had Elise’s taggy blanky and her favorite doll with. Both of her eyes were swollen shut for a while and her taggy blanky was comforting for her because it was so familiar.
  • Boppy. Swelling is enemy number one post surgery. When ever Elise was laying down she was propped up on the Boppy to help keep the swelling down. This also seemed to help her comfort levels.
  • We received this dog as a gift. It was a great comfort to Elise since she didn’t have her mobile. When her eyes were swollen shut it helped her to hear familiar sounds.
  • Along the same lines as above, a few months before the surgery I began singing to her one specific song, “My Favorite Things.” It doesn’t matter what the song is but I had read a lot about Music Therapy and how a familiar song can bring comfort. I “set the stage” so to speak by singing the song over and over again so that she would know that when I sang to her, I was there even if her eyes were swollen shut and she couldn’t see me.

Here is what you probably most wanted to know.

The timeline of the pre-op, surgery, and post-op recovery. We wrote about these at length during the process. Follow the links below for a detailed timeline.

Pre-Op Appointment Day – This photo was taken in the Plastics waiting area. She was so sleepy she fell asleep right on the floor.

Day of Surgery - Photo taken waiting to go in for surgery prep. I wore her in a sling so we wouldn’t have to deal with a stroller or car seat. It worked really nicely.


Recovery Day one

Recovery Day Two

 

And the last thing on a parents mind when they first hear something is wrong, but still it should be addressed, the cost of it all…

Before insurance coverage the cost of all the consultations, the MRI, pre-op appointments, the actual surgery, the hospital say (1 night in Pediatric ICU and 2 nights in the Pediatric wing) and the follow up visits thus far (1 week out,  3 months out) totaled up to just under $70,000.

Elise at One Year Old!

She is healthy. She is happy. Her hair is growing great. You can’t see the scar at all. She still has a bit of a “nub” but you only know it is there if you feel for it on the back of her head. Both of her follow up appointments went well. Dr. Clay says she looks great. We will have another check up before she starts preschool to make sure it is safe for her to play sports. She is healthy. She is happy. She is beautiful.

24 thoughts on “Sagittal Synostosis/Cranial Facial Reconstrution: Our Story

  1. Tiffany

    Thank you thank you thank you!!!! We’re still waiting on the results from the CT from last week, but after perusing the internet, I’m feeling fairly confident my daughter will need the surgery. Thank you for taking some of the fear out of it for me, I can’t thank you enough!

  2. Meg

    Good luck Tiffany. Both our plastic surgeon and neurosurgeon could tell Elise needed the surgery just by feeling her head. They did do a CT scan just to confirm. That is a big machine to see your baby in. Take comfort in knowing that kids heal amazingly quick. I wish you, your family and your daughter the best of luck. Feel free to ask any questions. I will reply as best as i can.

  3. Rebecca

    Thank you so much for sharing Elise’s story with this post and the slide show. Elise is beautiful both pre- and post-op. We are about to go through this for our daughter, Elsie who will be exactly 7 months old when she has the operation! It is reassuring to read/see someone else’s journey step by step as the surgeons are, although reassuring, very general. Thank you, thank you.

  4. Meg

    Good luck and blessings! It is scary but they are so strong. I wish Elsie the best! Remember to take care of yourself too.

  5. Linsey

    Thank you so much for posting your story!!! You are right, I turned to google and only 3 blogs gave me the info I needed and I’m feeling comfort! My little man is barely 7 weeks and the X-ray confirmed today he has SMS. So our journey starts today. I would love to chat more with you about this if you are willing!!!

  6. Steven

    Hey guys,good luck and hope everything goes well with your daughter,looking at your photos brought back memories of our son who was diagnosed with cranial systenosis which is what it was called then..when he was six months old..originally picked up by the baby health clinic…that was in 1992. I have a story if you are interested..but I don’t want to worry or scare you..so if you want you can email me and I also have heaps of photos..oh do you know that this condition is rarer in girls????Our son is doing well today thanks to Charlie Teo.. Send me a line if you would like more info

  7. Ethylin Wang Jabs

    Dear Elise and her family, I am a physician who cares for patients with craniosynostosis.

    I wonder if you would be willing to let me share photos of Elise for the public to learn more about sagittal craniosynostosis.

    Dr. Jabs

  8. meg

    Dr. Jabs, That is fine. we put her story on the internet so someday she could look back and see how brave she was and also in hopes that other familes find comfort in her success.

  9. anne-marie

    hello thanks for your blog it has really helped me alot my son is currently 7 and half month old and he were diagnosed yesterday which were a hell of a big scare to me. they are waiting to do his operration between 12 month and 18 month. so atleast we can have christmas and his first birthday out of the way which means alot to me. i am a single mum to four children so its not only me thats going through this my other children are and at the ages of 7/9/10 so i need blogs like yours to show them so thank u for shareing this and hope u can help with me cos i would like to do the same for other unfotunate parents thanks again anne-marie middleton (Amber) xxxx

  10. amber

    hiya i have just looked at the site and when i go to order a care pack its for zip code i am in united kingdom i aint yet got my operation date so think i should leave the care pack till i go on the 15th january which is when i will find more out. do u know of any other websites which are child friendly for my children thanks again amber xxx

  11. mashana

    Elsie is adorable. I was wondering. Did the surgeons reconstruct her forehead as well as open the saggital suture?

  12. Megan Post author

    Thank you.
    No they didn’t do anything to the forehead besides opening the suture.

  13. Angie Bode

    My daughter had her surgery done at Mayo Clinic also. She had surgery at 3 and a half months for cloverleaf crainosynotosis which all of her sutures were closed and was like that at birth. Her condition happens 1-50 thousand births and may be genetic. She had to wear a helmet after and now recently does not have to wear it anymore at ten months! I know exactly what its like and how scary it was in the beginning but it definitely makes you stronger later on! She will have to have an additional surgery when she turns 1 in November or December of this year. Thanks for sharing your story!

  14. Megan Post author

    Angie thank your comment.
    Good luck with the next surgery. Mayo is so great. Did you also have Dr. Clay?
    I have a friend who’s son had to wear a helmet… sometimes I think that would be even more difficult than the surgery and you and your daughter have gone through both!
    Blessings to you and your family. I will pray for your daughter.
    you are right, it does make you stronger!

  15. Beth

    Saw you commented on this, and read it again! still brings tears to my eyes seeing her like that and knowing she is so great now (minus her little princess/snot phase) ;)

  16. Diana

    Thanks for all the great info. I was told my 3 month old would need this surgery this past week. When I came out of the appointment everybody in the waiting room could see from my red and swollen eyes that I didn’t get good news. I did the same thing you did, googled and cried. The mind of a mom (parent) can do terrible things. The “what if….” scenarios. His surgery is at Vanderbilt Children’s hospital in Nashville, and I’m thankful for a great place to get treatment but it doesn’t lessen the pain. Anyway I’m terrified but I’m dealing with it the best I can. Thanks for all the good insight, I took some notes down. :) I’m wondering why they are telling me that not only will have have to stay in the hospital for over a week but will also have to wear a helmet for a little over a year… hmmmm.

  17. Linsey

    Diana: my heart goes out to you! My so was diagnosed at 6 weeks and had the surgery when he was 4 months old in September last year. So many unknowns I know. There is not slot of info out there! He was out in 3 nights… No helmet, no transfusion. I’m more than happy to talk to you and tell you about our experience and what I’ve learned along the way! You can email me at sefcovicest2006@hotmail.com

  18. Megan Post author

    Diana we were told that we might have to stay up to 5 nights but in the end we only had to stay 3 nights. Elise didn’t need a helmet because we chose to do a more invasive surgery. If your doctor has recommended the endoscopic surgery that may be the reason for the helmet. There is less scarring and it is less invasive than the surgery that was recommended to us for ELise by her doctors. There is a great community on Facebook: https://www.facebook.com/craniocarebearsinc that you should look into. It is families that have gone through this in many different forms. Good luck and if you have any further questions feel free to email me (no spaces): info @ timandmeg . net

  19. Renee Aguirre

    My baby is only 3 mon old and they are wanting to do surgery on him once he turns 4 mon old and I am so terrified i am really having a hard time excepting this it is really hard I am glad that I found your blog it has really been helpful . Who and where did u get your daughter surgery done at ? I am in somerset ky . Could you please help me with some of my questions ?

  20. Megan Post author

    @Renee It is terrifying and very surreal. I am glad our blog could be helpful to you. Please ask any questions you can always email me privately at info @ timandmeg . net (no spaces)

  21. Eryn

    Elise looks great! What an adorable little girl.
    I’m so happy to have found her story. I’ve been googling again…..my son is 9 months post op for saggital and at his last follow up there was some concern that his head hasn’t widened as much as expected and he still has a little bit of a nub in the back. I feel like his head is constantly changing and I’m just hopeful that by his 1 year post op he will have made even more improvement.

    It brightened my day to read that Elise had a bit of a nub too but was considered just fine.

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