December 13, 2013

Jackson's Synostosis Surgery Explained

"Your infant's skull has seven bones. Normally, these bones don't fuse until around age 2, giving your baby's brain time to grow. Joints called cranial sutures, made of strong, fibrous tissue, hold these bones together. In the front of your baby's skull, the sutures intersect in the large soft spot (fontanel) on the top of your baby's head. Normally, the sutures remain flexible until the bones fuse."
  • Sagittal synostosis (scaphocephaly). Premature fusion of the suture at the top of the head (sagittal suture) forces the head to grow long and narrow, rather than wide. Scaphocephaly is the most common type of craniosynostosis.


I watched and listened as the chief pediatric plastic surgeon, Dr. Siddiqi, (who also did Alayna's surgery) and the neurosurgeon, Dr. Riva-Cambrin, nonchalantly explain Jackson's surgery to us.

It was not done with an air of not caring, but rather of one who had done this hundreds of times before.

Still, how is one suppose to feel when you are being told that your baby will undergo a serious surgery to have a piece of his skull cut out?

I remember with Alayna's synostosis surgery, each word, every explanation of what she would have to go through was like a blow to the gut.

It was new, foreign, and terrifying.

I had no experience with such a thing, nothing to compare it to.

And of the two forms of surgery used to correct sagittal crainiosynostsis, those being "total vault" and "endoscopic", Alayna had the more serious, invasive one (total vault) since she was older. The endoscopic form can only be done before four months of age. (I'll explain why in a minute)

I knew without a doubt she would be okay. I felt such a sense of peace when Hubby had given her a priesthood blessing. 

But it was still so very, very, very hard.

So as Hubby and I listened and discussed what would happen with Jackson, I couldn't help but feel some relief that his will be safer and far less invasive.

I wish we could have done it this way with Alayna.

But I don't blame anyone for not having caught Alayna's condition sooner. How can I? More than one pediatrician had looked her over and it's probably difficult to diagnose something you've never had personal experience with. Besides, I'm sure it's tough when dealing with little children and babies to catch something new and some-what rare, especially when it would require something like a CT scan to know for sure.

But because of Alayna, they recognized Jackson's problem and moved on it right away.

So when Dr. Siddiqi realized we had two cranio babies among our children, he asked if we'd be willing to have our blood work used in a new study they are conducting in an effort to find out if there is any sort of genetic connection since, as of now, there is no indication that there is.

In fact, he said we were only the third family he's ever known personally to have more than one craniosynostosis baby.

Heh, not sure how I feel about that.

Anyway, I will do my best to explain what will happen and a few of the differences between the two forms of surgeries.

The day before Jackson's surgery, he will have to get his blood drawn so that everything is set up in case he needs a blood transfusion.

With his surgery, there is only a 15% - 20% chance he will need a blood transfusion
With Alayna, it was 100%.


Jackson's surgery should only take about an hour and a half from first cut to sewn up.
Alayna's was over five hours.


With Jackson, they will make two incisions. They will then use a camera to separate the skull from the dura (a thick, leather type layer that covers the brain) since they are actually stuck together in babies, then use scissors to literally cut out a large chunk of bone roughly two inches wide and a few inches long. They will also make a few other minor cuts in other places on his skull.

The surgeon explained that at this age, the skull is only about 2-3 millimeters think in certain places, allowing them to simply cut away the bone. By four months of age, it is much thicker which is why the endoscopic form has to be done before then.

They said that no matter how hard they try to prepare parents for what their baby's head will look like without the bone there, it still tends to freak them out a little.

If you think your baby's soft spot it weird, imagine what it will be like to have a giant one that goes down the back of his head.

But amazingly, that missing chunk of bone will actually grow back in within a year!

With Alayna, they literally cut her scalp from ear to ear so they could pull it down and remove the entire top of her skull so they could fix it.


With Jackson, there is a 90% chance that he will NOT have to spend a night in the PICU.

Alayna, spent one day/night there.


If all goes well with no problems or complications, we will get to leave the second post-op day.

With Alayna, we didn't leave until the fifth post-op day.


Now, here is where it all becomes new for us.

With the endoscopic form of surgery, the key to making it all work is the bivalve helmet.

Yes, Jackson will have to wear a helmet for about six months after surgery.

Essentially, this is how it will work.

Five days after surgery, we will need to take Jackson into the "helmet people" as Dr. Siddiqi calls them, and have his head scanned, then they will go about making his helmet.

About two weeks later, they will get it and Jackson will have it put on.

From there, we will need to go back in three months, not only for a post-op check-up with Dr. Siddiqi, but also with the helmet people to get his head re-scanned. Then again, two weeks later, they'll have a new helmet for him.

If all goes well, he can get it off three months after that!

The reason why the helmet is vital, is because it will hold the front and back of Jackson's head in place, allowing the brain, as it continues to grow, to push the side plates back out, rounding out Jackson's head naturally.

It takes roughly 3 - 3.5 hours for us to get to Salt Lake. I'm not sure how we are going to swing all these needed trips to and from with school, five other kids, and Hubby's work.

*cringe* That's a lot of hours, and a lot of gas.

Still, I feel like a ping pong ball. My emotions are constantly jumping from one extreme to the other.

My very soul detests that my sweet little guy will have to go through this.
Yet to my core, I feel so grateful it is not something more serious or life-threatening.

I cry every time I think about handing him over to someone else and trust that they will do the best they can in surgery.
Yet, I thank God every day for the miracle of modern medicine and that there are such talented and capable people to take care of my baby.

I hate that we will have to drive so many hours back and forth.
Yet, I am so very grateful there is such an amazing hospital so close and that we don't have to fly anywhere.

I really don't like the idea of Jackson having to wear a helmet after having had to deal with surgery.
Yet I am grateful for this safer and less invasive form of surgery.

I down-right hate that he is so very small and little and unknowing and still has to go through this.
Yet, for those very same reasons, I feel grateful. Because if all goes well, by the end of his first year of life, it will all just be another memory for me, and he will have no memory of it at all.

So there you have it in a nut-shell.

Surgery is set for January 3rd, just three weeks away.

Jackson will be exactly 7 weeks and 2 days old.

Even if the holidays aren't going to be as relaxed and carefree as usual, I feel that perhaps it will be one filled with a bit more gratitude.

Please continue to pray for us.

18 super cool people speak:

Lalani said...

I will continue to cry and pray with you. Jackson is a beautiful baby and I have so much to learn from you.

Megan Jones said...

I love you and your family even though we havr never met. I think of this trial you guys face and while it is hard, you are a perfect-loving mother who watches and protects her children. You are a strong woman who can do wondrous things. I will continue to pray for you and sweet lityle Jackson. Love you!

Lisa S said...

You have a beautiful family...and I will keep you in my prayers.

Christy Carlson said...

My cousin has had to have two kids wear the helmet, not sure about the surgery part, but both kids are great now. While your driving hear if you need anything let me know. We are about 30 minutes from the hospital, in Kaysville. That's a lot of trips and if the weather is bad or something, you are welcome to stay.

Saimi said...

Oh Serene my heartfelt prayers will be with you and baby Jackson. Such a sweet lil guy!

Emily said...

that first picture is SO gorgeous. what a darling little guy he is!! thanks for the explanation. i can't imagine having to do this, but at the same time it's wonderful to know that we can pray and find comfort. you are still in my thoughts and prayers. hang in there!!! and merry christmas!!

ldsjaneite said...

Let me know if you need a place to stay. I'm in Murray. Close to TRAX. I'm a 20 minute drive from Primary children's. I have a a couple of couches and a hideaway bed that are at your service. And if it is easier for you to bring some of the younger kids, there is room for them as well and I have neighbors/ward members who could watch them during the day when you need to be at the hospital. And I can watch them most evenings if that is the time you need.

Joanna said...

We will pray for him and your family! I have always remembered your great example from way back in Wymount; you are a great family and will get through this, eventually, as you said, just having a memory of it all!

Raelyn said...

When I was facing craniosynostosis surgery thirty years ago, Dr. J. apparently took one look at my rapidly deformed skull and said this. "It's just like fixing a broken arm.". Wait. What? ;)
"Because of Alayna, they recognized Jackson's problem and moved on it right away.". Consider that a "blessing in disguise", as that phrase goes!! Doctors can repair Jackson's craniosynostosis sooner than with Alayna's!! ;)
There is a new study going on about whether or not craniosynostosis is genetic? Interesting.... My sister is convinced that it is!! Are you going to partake in the study? Whoa. You are the third family he has ever known?! I repeat. Whoa. And, remember. Alayna is a girl!! Based on research, craniosynostosis mostly only effects boys!! ;)
I needed blood transfusions. And it was not even my own!! Poor Mom cannot remember if I needed blood transfusions because of the craniosynostosis, or congenital diaphragmatic hernia. 1984 was not good to me!! Praying that Jackson doesn't need any blood transfusions!! ;)
The missing chunk of bone should grow back? My goodness, did God make our bodies amazing!! ;)
Jackson may not have to spend the night in that hospital? You will get to leave on his second post-operation day? Oh, I am so very glad!! ;)
Jackson is going to look adorably handsome in his helmet!! I cannot wait to see pictures!! I happen to kike "helmet babies". No clue why!! I could have most likely benefited from the helmet. I wouldn't have "Mt. Cranio" on top, and the back/front of my skull might not seem quite as "bony". But they weren't practicing with helmets thirty years ago!! ;)
I get your "ping-ponging" of thoughts/emotions/feelings. Trust me. I do. Entrusting your sweet little prince to a neurosurgeon is not easy!! It shouldn't be. Why? Because you love this little dude with life itself. You're a good Mom, Friend. ;)
January 3rd. 7 weeks and 2 days old. I will be praying!! My Mom is too, by the way. She gets it far better than I ever will. ;)
PS. I tried to keep this comment brief. Honest!! Now. I need to head to bed. Is it really past 11:30?! Yikes!! I lost complete track of time!! And I am going Christmas shopping tomorrow!! ;)

Raelyn said...

PS. {Again!!} I will repost this--sans pictures--come Monday on my main Blog, Beautifully Unique. If you do not mind!! ;)

Brandy Lynn said...

Serene- My heart is breaking for you guys to have to go through this with your sweet little man. Please know that you are in our thoughts and prayers and that everything will work out the way that it is supposed to. Stay strong!

Sara Lyn said...

I get that ping-pong feeling of emotions. It's so hard. Yet, I'm glad that you can feel gratitude as well as all the negative feelings. You're very strong. We'll be praying for your family. Be easy on yourself. You're under immense stress. Love you!

Raelyn said...

One day later than promised, I posted an update about Jackson on my Blog, Beautifully Unique!! Thoughts and prayers abound!! ;)

Seth said...

Love the picture of you and Jackson - brilliant. Y'all are still in our prayers. Thanks for your strong example.

Kourtnie :) said...

Hi Serene. Not sure if you remember or not, but about 3 years ago we emailed a little about Dr. Siddiqi and helmets. After reading that you are now facing another scary surgery, my heart aches for you. My thoughts, prayers, and positive vibes are with you, your family, and the doctors.

On the flip side, the helmet people are pretty amazing and the technology is really fascinating. Continued thoughts and prayers!

Valerie said...

Since I'm studying biotechnology and we do a lot genetic stuff, I had been wondering if there really is a genetic link that they don't know about after you said they didn't think there was. I'm glad someone is studying it.

That is so much for you guys to handle and I hope that you have lots of help with the trips and watching children. Lots of prayers!

balloongal said...

Definitely praying for you.
Our new baby has the same red, white, and green striped sleeper.

Anonymous said...

On the flip side, the helmet people are pretty amazing and the technology is really fascinating. Continued thoughts and prayers!

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