Saturday, March 28, 2009

questions about Ben's craniosynostosis surgery

Monday I meet again with Dr. Mace, Ben's surgeon. I have composed a list of questions to ask during this appointment and I will post the answers after Monday's appointment. If you can think of any other questions I should ask, leave a comment below or let me know.

Before surgery
When / where do I donate blood for his transfusion?
How many more appointments will we have between now and the surgery?
Will Ben need blood work done prior to surgery?
Is there a time he should not eat prior to surgery?
He’s on medicine for reflux – should he stop while in the hospital?
Will that interact with any of the other medications?
Will his head be shaved?

During surgery
How long does the surgery last?
How soon can I breastfeed after surgery?
Should I bring pumped milk?
How long is the hospital stay?
Will Ben be in intensive care?
If so, will he stay in intensive care for his entire stay?
Can my husband and I stay with him at the hospital?
What kind of pain medication will be used?
Where exactly will the incision be?
Will it be a straight line or a zig-zag?
What are the possible complications?
What type of anesthesia will be used?
Is the anesthesiologist a specialist in infants?
Is the brain ever touched during surgery?
How long will he have bandages on his head?
How long after surgery will he be coherent?
How badly will his face and eyes be swollen and how long will it last?
Will he most likely be nauseas after surgery?
How long does the nausea last and can he be given medication for it?
Will he have black eyes or peeling eyelids from the swelling afterwards?

After surgery
What kind of medicine will he need to take once he’s home?
How long will he be sore or need medicine once he’s home
How long will we need to be incredibly cautious with his head?
What should we expect as far as eating / sleeping changes?
Should he sleep angled or on a pillow?
Can I pull clothes over his head? If not, how long should I wait?
How do we care for the incision?
When can we wash his hair?
How many more appointments will we have after the surgery?
Will he have stitches that will have to be removed?
If the stitches are dissolvable, how long until they dissolve?
When will we know if he needs a helmet?
Do families purchase helmets for protection as opposed to shaping?
Is there a chance of Ben needing a second surgery and how will we know?
What are the chances Ben will have any development delays due to compression on his brain thus far or from surgery?
How long until we can notice a difference in his head shape?

I can't believe we're only about six weeks away from surgery. We should be scheduling it during Monday's appointment. I have spent a great deal of time reading message boards and other mom blogs about this surgery. Many babies have had a rough time sleeping, eating, and being comfortable for several weeks after the surgery. Several moms said it was as difficult as first bringing them home from the hospital as newborns, because they cry a lot and don't want to sleep very long. Other moms didn't have as difficult a recovery. I am so grateful he is able to have surgery so young, because it seems the moms of toddlers had a much harder time with recovery. Some even reported their babies having night terrors for many months after the surgery. Scary.

I believe the incision will be horizontal from ear to ear across the top of his head. A strip of bone will be removed where the pink lines are below.

*Diagram from American Family Physician

Here is Ben's head, thankfully not nearly as bad as the diagram.

My list makes me seem like a crazy paranoid mom, but it is so terrible and overwhelming to think about my baby having surgery in six weeks. I just want to know everything I can.


  1. Lara,
    These are great Q's. You sound very proactive in Ben's treatment. His Doc's will probably answer 3/4 of the Q's before you get to ask them at the next follow up. My son had cranio surgery in January (lambdoid) and is doing awesome; your's will too. Hang in there!

  2. Lara,
    I want to talk with you please, I have my son and I need to check with you about the surgery

  3. my daughter had this surgery in 1986, she is completely healthy and functioning.