And so – post surgery #1 – begins the next phase of Ava’s Journey.
In February we went back to Dr. Steinbok and he ordered a quick CT and MRI. Again, she needed to be anesthetized, and again, she came through it like a groggy little trooper…
It turns out that Ava’s MRI is showing a Chiari Malformation still, but her CT shows that her cranial pressure has been relieved and she’s functionally good as new.
A huge victory, but not altogether surprising. We knew that this current issue was more cosmetic than ‘medical’ or ‘functional’.
After examining her CT with us, Dr. Steinbok leaned back in his chair, clasped his hands together and said – unequivocally – “Ava does not need a second surgery”.
I said, “But Dr. Steinbok, our plastic surgeons and our colleagues in the US have all reviewed Ava’s case and said she would cosmetically benefit from another surgery. Nobody seems to be able to tell us if this forehead bossing is going to get worse.”
“I am a neurosurgeon, and as such, it is my job to make sure the child is medically well and looks close to normal. Plastic surgeons are looking for perfection. We should monitor her Chiari Malformation as she gets older, but she doesn’t need a second surgery. We can get her fitted with an orthotic helmet if that will make mom feel better. You’re feeling a bit anxious aren’t you mom.”
Ummm… anxious? Yes, I suppose… Okay, fair enough, I AM feeling anxious, but isn’t it my JOB to make sure Ava has every opportunity in life she can possibly have? Including protecting her from teasing and insecurity? I mean, I’m not asking for my daughter to be in pageants or have hair extensions. I’m asking for her to have a normal head, not close to normal.
We left the meeting feeling confused, caught in the middle and scared.
After more research and consultation (this time with Dallas Craniofacial Center in Texas) I decided to write Dr. Steinbok an e-mail requesting a change of heart. I explained that we feel her head shape IS of concern, and that Ava’s long term self-esteem issues need to be accounted for.
He replied that he would discuss it further with Dr. Bush and Dr. Bush would let us know the outcome.
SO…. next meeting with Dr. Bush (two weeks ago), we are told that Dr. Steinbok does not want to participate in a cranial vault reconstruction, but he has provided his own cosmetic surgical option that we can discuss further with him. UMMMM…. bring on more confusion…. Dr. Steinbok is a neurosurgeon, not a cosmetic surgeon? Exactly why is he proposing a cosmetic solution?
We told Dr. Bush we’d like to continue pursuing his suggested option of a cranial vault reconstruction, but since Dr. Steinbok is blocking this, what can we do?
He told us he’d been thinking about it and we should get a second opinion if we feel strongly that the reconstruction is the best option. He mentioned that he was trained by doctors in Toronto and he could send our information and scans to them, and get their opinion. He said they work very much in a ‘team’ capacity at Sick Kids Hospital, with neurosurgeons and plastic surgeons working collaboratively on determining the best approach for each individual craniosynostosis patient.
I spent the next week writing letters to Dr. Steinbok that I never sent.
And then we heard back.
Yes – after reviewing the photos, scans and reports, the doctors at Sick Kids in Toronto feel that Ava should have another surgery. Yes – they are willing to do the surgery.
Bring on the relief! Bring on the fear! Bring on the resentments toward Dr. Steinbok!
Flash forward to this week. Two days ago we met with Dr. Phillips from Sick Kids Toronto on a 7 am video conference. He asked us all kinds of questions and told us what we could expect and when the surgery will likely happen (early April). He said they would like to do a total vault reconstruction this time (not just anterior or posterior). He said he’s going to talk to his neurosurgeon and start putting together a team to work on Ava. More questions from me:
“How long will this one take?” “Six hours.” “Will she need a blood transfusion?” “Yes, she definitely will this time.” “How long will she be in hospital?” “She will be in hospital five to six days.” “Have you had complications with these surgeries?” “Not yet. Risks include blindness and death, but it hasn’t happened yet.” “How many of these do you do?” “We do three to five a month.” “How long will we have to be in Toronto for?” “Two weeks. She’ll need to be fitted with a helmet when it’s done.” “How bad will the swelling be?” “The swelling will be bad. She will have black eyes and they will be closed shut for one to two days.”
Deep breaths. Big, long deep breaths. When the video conference was over, the nurse let us stay in the room and collect ourselves. Ava was busy mashing goldfish into the carpet. Her mom was busy breathing.
Brian looked overwhelmed and tired (it WAS 7 am after all).
And here we are today. It’s been two days since our conference. We know we’ll be heading to Toronto in April. We know things are done differently there. We know their neurosurgeons and their plastic surgeons work together. We know they do a lot of these surgeries. We know they have a perfect track record. We know this surgery is our choice, and we know that Ava would want us to do it.
What we don’t know is how this will turn out.