Monday, March 30, 2009

answers about Ben's craniosynostosis surgery

We had the appointment today and the doctor confirmed my suspicion that his head shape has gotten significantly worse. Because of this, he is planning surgery for the first half of May when Ben will be 10-11 weeks old. He said I win the award for the most questions on a second visit. We will schedule surgery during our next appointment at the end of April. If anyone thinks of any more questions, let me know and I'll take them to that appointment.

Before surgery

When / where do I donate blood for his transfusion?
I will donate at the Community Blood Center and I will be called this week to let me know when. It has to be within a specific window of time close to the surgery.

How many more appointments will we have between now and the surgery?
One more appointment at the end of April. We will schedule surgery then, for sometime during the second week in May.

Will Ben need blood work done prior to surgery? yes

Is there a time he should not eat prior to surgery?
Typically midnight, but when I meet with the anesthesiologist prior to surgery ask again, because of breastfeeding.

He’s on medicine for reflux – should he stop while in the hospital?
Again, ask the anesthesiologist. Probably no medicine the day of surgery.

Should he stop taking medicine several days before surgery? No.

Will that interact with any of the other medications? See above.

Will his head be shaved? Typically yes, but the doctor’s going to only buzz the are where his incision will be. He will also keep the hair for me, since it’s technically his first haircut.

During surgery

How long does the surgery last?
1 ½ hours but I won’t see him for a total of three hours including pre and post op.

How much bone will be removed?
The strip of bone will be 1 ½ inches wide and 6 inches long. The bone is so thin at this age it can be cut with scissors!

How soon can I breastfeed after surgery?
As soon as he’s out of recovery.

Should I bring pumped milk?
Yes, and the pump just in case.

How long is the hospital stay? 3-4 days

Will Ben be in intensive care?
Yes, for at least the first 24 hours.

Can my husband and I stay with him at the hospital? yes

What kind of pain medication will be used?
Tylenol and codine in the hospital and only Tylenol once he’s home.

Where exactly will the incision be?
From ear to ear across the top of the head, behind the hairline.

Will it be a straight line or a zig-zag?
The incision will be a zig-zag so the hair lays better over it once it grows back.

What are the possible complications?
There is a 0.5% chance of infection and an even smaller chance of too much bleeding that would require an additional blood transfusion.

What type of anesthesia will be used? General.

Is the anesthesiologist a specialist in infants?
There is one who recently started and completed her fellowship in a pediatric unit. I have requested her for Ben’s surgery.

Is the brain ever touched during surgery? yes

How long will he have bandages on his head?
The bandages will be removed the day he goes home from the hospital.

How long after surgery will he be coherent?
He’ll be awake that afternoon but groggy for the following day at least.

How badly will his face and eyes be swollen and how long will it last?
The swelling varies but will be at it’s worst a day or two after surgery and should go down within a few days.

Will he most likely be nauseas after surgery?
The anesthesiologist can give him anti-nausea medicine.

Will he have black eyes or peeling eyelids from the swelling afterward?
Possibly black eyes but not peeling eyelids (that’s more common with facial surgery).

After surgery

What kind of medicine will he need to take once he’s home? Tylenol

How long will he be sore or need medicine once he’s home.
Varies, couple of weeks?

How long will we need to be incredibly cautious with his head?
Treat the head like he’s a newborn / or like his whole head is a soft spot.

What should we expect as far as eating / sleeping changes?
Difficulty for the first few days home.

Should he sleep angled or on a pillow?
Nothing different than right now.

Can I pull clothes over his head? If not, how long should I wait?
Avoid tight fitting clothes for the first couple of weeks.

How do we care for the incision?
Keep it clean and dry.

When can we wash his hair? He can take a full bath a week after surgery.
Sponge bathe until then.

How many more appointments will we have after the surgery?
One month and three month follow up.

Will he have stitches that will have to be removed? Dissolvable

If the stitches are dissolvable, how long until they dissolve? About 2-3 weeks.

When will we know if he needs a helmet? Very unlikely.

Do families purchase helmets for protection as opposed to shaping?
Only needed for toddlers / walkers who risk bumping their heads.

Is there a chance of Ben needing a second surgery and how will we know?
There is a chance that the plates could refuse and he would have a less than desirable cosmetic correction, and in even rarer cases he would need a second surgery.

What are the chances Ben will have any development delays due to compression on his brain thus far or from surgery?
Very unlikely given his age.

How long until we can notice a difference in his head shape?
Immediately, and improving over time; completely corrected by age 2 (as much as it’s going to be.)

Questions from friends:

Have you used platelet rich plasma therapy for this procedure?
It’s not recommended because of the cost and because newborns heal so quickly.

Are there any long term consequences/things to be on the look out for?
He’ll be monitored for early fusing.

What is the recurrence rate? Any increase chance for a similar problem in future babies/siblings?
There is a chance, but it’s still rare and there is no certainty of how common it is within a family.

What are the chances that he will need further procedures related to the current problem down the road? unlikely

What are things to be watching for (i.e. is there anything that if he does/doesn't do) that should make one contact the surgeon right away?
Fever, infection, redness around the incision

How long and often will he have follow ups related to the surgery?
At least 2, 1 month and 3 months

Anything to specifically avoid given his current problem both now and after the surgery?
No, for the most part his care will not change.

Is there anything else that should be known about the current condition, procedure, recovery, and outlook?
His head shape is more severe than last time (at 5 days), and surgery is recommended for 10-12 weeks of age.


After all of the excitement of visiting the surgeon we went to Wal-Mart to get Ben a toy. Actually, I got him a security blanket because I've been reading and discussing with my friends how much it can help transitions to have an attachment object. I bought two just in case something happen to the first. He's been grasping and holding onto his gross burp rags when he's in his car seat, so I figured I'd give him something a little nicer.

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