"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.