#Momlife, Family Health

Our Baby Has Sagittal Synostosis

There’s not…I don’t even…

Sagittal synostosis is the most common form of craniosynostosis. Craniosynostosis is a birth defect in which one or more of the sutures in a baby’s skull fuses prematurely. As the brain grows, the skull becomes misshapen (deformed) and can cause pain and neurological damage.

I guess that’s the way I need to start. When you talk about it like that, it sounds totally calm and reasonable. This is a problem. This is the name of the problem. This is what happens if you don’t fix the problem.

In a few days, a team of surgeons is going to take Felix, sedate him, and cut into his head to remove large pieces of his skull. But I can’t think about it like that or I start to feel hysterical and that doesn’t help anyone.

Unemotional list of facts:

/// The sagittal suture is the line that runs down the middle of your skull from the front to the back. It’s supposed to stay open through adolescence to allow the skull to grow as a person gets older.

/// There is a large soft spot for most infants at the front of the sagittal suture where other sutures in the skull meet.

/// When the sagittal suture is fused, the skull cannot grow to accommodate the brain. It will temporarily stretch the bones of the skull to make room which forces the skull to grow long and narrow. The baby’s head doesn’t get any wider, but the forehead and back of the head become more pronounced. This unusual shape is usually the way a baby is first diagnosed.

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/// Felix has a completely fused sagittal suture and his front soft spot has almost completely disappeared.

/// If untreated, the deformity of the skull becomes more pronounced and neurological problems are possible as the brain continues to grow. Pain is also possible/probable as the skull stretches against the fused suture.

/// The only way to correct sagittal synostosis is surgery. There is no alternative therapy such as only using a helmet. One approach to surgery is to do a cranial vault reconstruction in which the bones of the skull are removed and remodeled. The other approach is to do an endoscopic strip craniectomy in which surgeons remove the strip of bone containing the fused suture, along with other small pieces of bone in the skull. Helmet therapy is used following surgery to encourage the skull to grow normally as it heals. The strip craniectomy is considered a minimally invasive surgery compared to the full cranial reconstruction as it doesn’t take as long, has smaller incisions, and is less likely to result in problems with blood loss during the procedure.

/// Felix is just young enough to be eligible for the strip craniectomy. He is scheduled to have that surgery this week after he is fitted with a helmet. If everything goes according to plan, he will have the surgery, spend a few days in the hospital, come home with what could be considered a very large soft spot, and wear a helmet for the next year as his head heals. After that he shouldn’t have any problems.

You know, we’ve had our fair share of child medical drama considering we’ve only been parents for six years and one month. The funny thing is that instead of spending a lot of time thinking, “Why can’t we have just had healthy kids?” I spend a lot of time thinking, “It could be so much worse. At least it isn’t something they can’t treat. At least we have good insurance. At least we live in a big city with a great pediatric hospital.”

My brain keeps doing that now and it actually does help a little. I didn’t know what craniosynostosis was last week but we happen to live about ten minutes away from a team that handles this condition so often they actually run a craniosynostosis clinic that serves five states. If we’d waited an extra month or two to take him to a specialist, he wouldn’t have had the option for the more minimally invasive surgery. We’re really very lucky.

And then I think about him actually having surgery. I try to imagine exactly how they’re going to get him away from us to take him in for the procedure. Before we had the appointment with the specialist, I told Kyle surgery wasn’t an option unless it was the only option because I’d be damned if someone was going to hurt his fuzzy head. It’s the only option. We can’t even explain it to him. He’s going to wake up disoriented and bandaged and he won’t even know why we took him in to have them do that to him.

I swing back and forth from feeling stupid for being all screamy about something that is considered a minimally invasive surgery and feeling like what the hell kind of mother am I that I’m going to intentionally drive him to a place where people want to cut into his head.

Also, this is completely stupid, but I feel like this is my fault. It’s a birth defect. I made the damn skull. I don’t know how I did it, but I’m the 3D printer that gave him the skull that decided to stop growing about seventeen and a half years too early. What the hell kind of mom gives a baby the kind of skull that doesn’t even grow?

You know the doctor told me at his two month appointment and at his four month appointment that she thought there was something wrong with his head. She used the word disfigured and then told me he was still kind of cute despite it so I left the appointment and called her names when I talked to my friends and started looking for a new pediatrician because sometimes heads are just funny looking and Felix is the cutest baby in the world. It wasn’t until she really annoyed me by harping on his “ugly” head at a check for an ear infection that I even agreed to see a specialist just to shut her up.

I should have seen it. I spend about 22 hours a day with his head. How did I not see it?

People have asked how to help and what they can do and I don’t even know what to tell them because I don’t know what to do. In the days that we found out about his surgery, we went under contract for a new house because there’s only so much sitting around and worrying that parents can do and at least we have something to talk about now that isn’t us telling each other he’s going to be fine even though neither one of us really has any more power over that than the other.

I will say that I’ve learned that “how are you doing” and “how are you doing today” are different questions. The first one has no other answer besides notsogood because our kid is having surgery this week, but the second one leaves space to say “I’m having a rough time and don’t feel like talking” or “I’m stressed and need to vent” or “I’m excited about the house” or “I’m relieved that we have a plan in place for the baby” or “I’m at Target and they have the cutest stuff in the dollar section” and there’s an understanding that whatever I just said is temporary and could easily morph into something else in the next ten minutes.

Got a care package and some $5 Starbucks e-cards, and lots of text messages. All nice, even if I haven’t responded to you. Can’t do visits right now and will probably screen calls because I don’t like talking mid-crisis much. I like finished stories with solid endings. As in, “the baby had surgery and everything went great so they sent us home after a few days and now he’s just recovering.” That’s a better time to chat.

I’m worried about my husband because this super stressful thing is happening with his kid but he seems a lot more even keel than I am right now. I’m hoping he’s not just doing that to level me out.

How does a person have a minor procedure on their skull? Next to the brain?

The doctors seemed really smart. From what I’ve read, this is like a 3 or 4 out of 10 surgery for them as far as difficulty goes. Super minor.

Why on earth do the co-pays on helmets cost so much? We can make it work but only because we’re blessed in many ways. Are poor people just not given the option to do the less invasive surgery if they can’t afford the next 12 months of helmet therapy?

I’m kissing the top of his head so much these days that I think I’m actually rubbing the hair off. I guess that’s one less thing they’ll have to worry about in prep.

I’m in a couple of online support groups for kids who have craniosynostosis and so many of those kids have larger issues and other complications. We’re very lucky.

Apparently I get to authentically use the #craniomom hashtag just like I get to use #allergymom, #asthmamom, #eczemamom, #cerclagemom, #preemiemom, and maybe #giftedmom or #IEPmom. It’s like reverse girl scout badges. First you get the label and then you go through the challenge to earn it, picking up unexpected friends in the meantime because you’re bonded in the sisterhood of “this totally sucks, I didn’t sign up for this, what am I even doing?”

Wow. This post is really fractured. Unlike my son’s skull right now, haha.

I swear I’m holding it together, you guys. Kyle could probably use some more Starbucks though. I hear his wife is in serious danger of freaking out and running her five month old football-style straight outta the hospital as soon as they produce the teeny hospital gown. We’ll see…

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  • Reply Jessica

    Love you guys. Here for you always.

    April 23, 2017 at 12:17 pm
  • Reply Amy

    I don’t do instagram, so with the mention the other day I’ve been anxious to read what’s going on. I did some reading last fall on Felix’s condition, as both of my sons had “strange” heads. While waiting the nearly three months to be seen by a neurosurgeon, I looked up all sorts of things that contribute to irregular heads and sought out a cranial specialist that could see us sooner. The neurosurgeon we eventually saw agreed with the diagnosis of brachycephaly for one twin and brachycephaly with plagiocephaly for the other. We didn’t need surgery, but we have been in helmet therapy since October for one of the boys. It’s a long road but we’ve seen improvement. I’m uninformed as to how helmets for Felix’s condition are constructed, but I recommend mustela foam shampoo, much better than Aveeno for the sweaty head smell. Will be thinking of you!

    April 23, 2017 at 1:17 pm
  • Reply Bryttin Jones

    Praying for a smooth surgery, quick recovery and Felix going back to being the happiest baby on the planet. Love you, friend!

    April 27, 2017 at 1:15 pm
  • Reply Tracey Kenowski

    Hi. Wondering if your willing to chat with me. We have a newborn. Two weeks old and I am suspecting sagital fusion. I am absolutely terrified.crying thinking all those same thoughts and crying.

    October 12, 2018 at 12:13 pm
    • Reply Amelia Chase-Wise

      Tracey, I was just reading this blog because my son, Robin, is having surgery for sagittal craniosynostosis next week. He is 6 months old, and I know the sadness and fear that you’re going through. If you would like to talk about it, or just see what Robin’s surgery is like, you can find me on Facebook. My name is Amelia Chase-Wise, from Kentucky!

      October 27, 2018 at 7:45 pm
  • Reply Katelyn an destiny

    I am going threw the same thing i will be haven my 8 month old go to seattle craniofacial childrens hospital to do the surgery:(

    December 26, 2018 at 6:22 pm
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