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.
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.