Coping with Craniosynostosis in Your Newborn

I know it came as quite the shock to me when my son was diagnosed with sagittal scaphocephaly/craniosynostosis when he was just 1 month old. I'd taken him in to the doctor's office because he'd been vomiting due to a bad cold. They said he was fine, not dehydrated or anything.

Then they told me to get a head x-ray on Monday. No other explanation was given.

It's a strange feeling to be told more or less out of the blue to get a head x-ray done on your child. I had just figured that his slightly odd head shape was due to being a C-section due to breech position. It wasn't obvious at that point that there was a problem.

Lucky me, I happened to be a medical transcriptionist at the time, and had overheard a part of the doctor's conversation with another doctor. I was able to look up what she was talking about, and found out about craniosynostosis.

That's not to say that I remained calm about the whole thing. We're talking about my baby, after all.

But by the time I was done researching, I was quite certain of the diagnosis. Once I knew about the condition I could see it clearly. Well, that and the obvious lack of a soft spot on the top of my son's head.

Even so, getting the diagnosis confirmed came as quite the shock. No parent wants to hear that anything is wrong with their baby. And then there's the decision to get the surgery, with all the inherent risks, versus the risks of letting your child's head remain misshapen.

It's rough in so many ways dealing with this condition. It comes about so early in your baby's life, and there's no real way to be prepared for such a diagnosis.

But you can cope with it and make the right decisions for your child.

There's a lot to do before your child can have surgery to repair craniosynostosis. You'll probably have to get a CT scan of your child's head, and that means using general anesthesia so that he or she will remain still for the procedure.

Minor as this is relative to the surgery itself, you may feel some anxiety about your child being put under anesthesia. This is quite normal.

The CT scan lets the doctors see in detail the condition of your child's skull. With craniosynostosis they may be able to point out to you how the suture of your child's skull has fused, and how the shape is changing in ways you can't see yet.

When my son was first diagnosed, his condition wasn't that obvious until I started reading up on things. But by the time he was three months old and old enough for the surgery, it was clear there was an issue with his head.

It was longer and narrower than most babies' heads. The forehead was beginning to bulge out just a little.

On the other hand, I found the shape of the back of his head remarkably comfortable to cradle when I held him. Somehow it just fit so nicely into my hand.

As the date for the surgery gets closer, you'll want to make sure you have everything ready to make your life simpler the day of the surgery and immediately after. You'll want your support network in place so that you have people to lean on and so that any other children you have will be taken care of as you deal with the surgery.

You'll want people to come visit you in the hospital and give you breaks. Breastfeeding moms will need to prepare to stay in the hospital with the baby after the surgery.

If you're breastfeeding, make sure you bring your breast pump. I forgot mine, and thank goodness the hospital had one for me! While I had pumped before my son's surgery, it wasn't until the wee hours of the next morning that he was finally interested in nursing. It takes a long time for anesthesia to wear off in babies. Be prepared.

Both parents will probably want to take some time off work. How much depends on your family's situation and personal tolerance. A good employer will be very understanding that you need time to deal with this.

Babies don't have a lot of needs in the hospital. Bring things to do for yourself, as your baby will probably sleep even more than usual due to the pain medications.

Fair warning, they do show a bit of the surgery itself here. It's not extremely graphic in my opinion, but if you're really squeamish you might want to avoid the middle section of the video.

This is the kind of surgery my son had to repair his craniosynostosis. His was done at Children's Hospital in San Diego, CA

If you get the endoscopic surgery, you're probably going to be dealing with a few months of helmet therapy. Exactly how long depends in part on how good you are about keeping that helmet on baby's head 23 hours a day. The more often you decide to give baby a longer break, the longer it's going to take to reshape that head.

Getting the helmet is a bit of an involved process. They first have to take a casting of your baby's head. Depending on your baby's temperament and mood that day, this may be easy or cause for a major headache.

You'll also likely go through this process more than once. We had to get two helmets for my son.

The casting process takes some time. The first time, my son found it comforting, apparently, and fell asleep. The casting materials get a bit warm, and he just dozed off.

Other times babies scream through the whole process. Most likely, it's somewhere in between.

When the helmet comes in, you'll get instructions on how to care for it and your baby's head. It really does need to stay on 23 hours a day as much as possible. That one remaining hour is to clean and air out your baby's head and the helmet.

You can also use that time to decorate the helmet. We painted ours.

You will have a lot of appointments to adjust the helmet. Ours started out at twice a week, then just once a week as my son got older. We were very good about the 23 hours a day rule, and made it through this part in good time. Still took about 3 months overall, including a break between helmets waiting for the second one to come in.

During this part I considered myself to be extremely luck to be a work at home mom. Honestly, I don't know how the working outside the home parents managed, and I deeply admire them for doing so.

Just think about it. Shortly after the surgery we had twice weekly appointments to adjust the helmet. Plus follow up appointments with both surgeons, separately. It was not at all uncommon for me to have appointments on three different days during the week.

This is just one of those things you have to prepare for. You'll have to figure out what's going to work for your family.

Just because you're done with the helmet and your baby looks like all the other kids doesn't mean you're done with craniosynostosis.

Rats. Rats, rats, rats, rats!

At least that was my feeling on the matter.

We have follow up appointments until my son is 5, which is coming up and he still looks great. There are follow ups with his surgeons, which started out close together after the surgery, to every 6 months, and now once a year. They check for how the head is growing to make sure things are still going well.

He also has annual (originally every 6 months) appointments with a pediatric ophthalmologist to check his optic nerve for pressure. This is one of the easiest ways for growth problems to be detected, as the optic nerve is highly sensitive.

Don't skip these. If a problem develops and puts pressure on the optic nerve, blindness can eventually result. You really want to know if something is happening.

Scary part said, my son has had perfect tests so far. His ophthalmologist has even commented that his optic nerve shows no sign at all of the surgery having ever happened. He's doing great.

Share your thoughts on coping with craniosynostosis, whether your child has long since recovered or you're just learning about it now.