Answers

Back in November I had a list of questions that we had regarding Harper's treatment plan and surgery, I thought I would post the answers: Is only her Metopic suture closed? Yes, she only has Metopic Craniosynostosis

Do you consider her case mild/moderate/severe? Originally we were told moderate/severe but she is now classed as severe metopic

Will you do a CT to confirm the diagnosis? We had a CT scan done back in November 2010

Do we need to see a Geneticist? An Ophthalmologist? No geneticist, we saw an ophthalmologist who checks for ICP (Intracranial pressure)

What is the chance of this happening to another sibling? Unknown

Will she have traditional (CVR/FOA) or Endoscopic surgery? CVR/FOA (this is all our hospital offers)

Will she have to do helmet therapy? No, but she may need a protective helmet if she is learning to walk during recovery

How soon will the surgery be done? We first saw the team in November and surgery is happening in July 2011 when Harper is almost 11 months old

What is the chance she will have to have a blood transfusion? Very high, she only has a small blood volume and the area they operate on is likely to bleed alot

Do you use Procrit injections? No

Can we donate blood for a direct transfusion? No

Is it true if we donate blood we cannot donate an organ in the future? N/A

How many appointments will we have between now and the surgery? We ended up having: CT scan Neurosurgeon Ophthalmologist CFPS follow up Pre Op appointment Neuropsychologist

How many follow up appointments after surgery? at 4/6 weeks, 6 months (I think) then every 12 months

What are the possible complications from surgery? Brain damage? A lot of complications, as discussed with the neurosurgeon, but all with a low chance of occurring

What is the chance of a second surgery being needed? Likely but only for cosmetic reasons

What are the possible risks if we choose not to do the surgery? We may find that Harper will have trouble talking and learning, or she may be fine. At this stage we are already seeing developmental delays with Harper

Will she have any problems with her eyes? No

Will she need blood work done prior to surgery? She had bloods done in November and will have more the day before surgery

Is there a time she should not feed prior to surgery? She needs to fast from 2.30am

How long does the surgery take? Approx. 6 hours

How long is the hospital stay? Up to 6 nights

Will she be in intensive care? No

Harper is exclusively breastfed. Will I be able to stay with her in ICU? N/A

How soon can I breastfeed after surgery? whenever she is ready

Are other visitors allowed? Yes, visiting hours are 8am-12noon and 2pm-7.30pm

Will you shave her hair? Only the strip for the incision

Where exactly will the incision be? ear to ear

Will it be a straight line or a zig-zag? zig zag

Will you use stiches or staples, are they dissolvable? dissolvable sutures

What type of anaesthesia will be used? Gas at first

Is the brain ever touched during surgery? No

How long will she have bandages on her head? A few days

How long will we need to be incredibly cautious with her head? 6 weeks

Will we have to change her sleeping arrangements? Pillows etc. No