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.”
His reply:
“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.
Deep breaths.
I know you are scared, but I can tell you one thing….she will be in the best hands with Dr. Phillips. I trust him 100% I’ll tell you everything you need to know about sick kids hospital, and if you want I can come and meet you in person. xoxo
Janet from cranio kids <3
Hi Melis,
I have tears rolling down my face, reading your story and feeling your fears. I have always admired you for your ability to articulate and your strength. I believe, given the situation that every parent would do exactly what you are doing. I find peace in knowing that you will be able to talk to Ava when she is older about your journey and your decisions. She will be so thankful to you and feel an abundance of love from you and Brian. She is your daughter and from her journey already, she has your strength. We will think of you all while you are there, send her well wishes, strength and wishes for a quick recovery! If I could bottle some extra oxygen I would send you that! My heart and thoughts are with. Love & Hugs
Hi Meliss – Ava is lucky to have such courageous and intelligent parents. You are doing the right thing. Keep breathing. Keep loving. You and your family will be in my prayers.
xoxox
Deb
I wanted to thank you for writing your story, I have a 9 month old daughter who has bi-coronal cranio with a number of other congenital defects (bifid thumb, anterior anus, dislocated hips and the cranio). We have also struggled with the lack of diagnosis and your post about your mixed feelings about getting your results really hit home.
I wanted to write to you (something I never do) to let you know how wonderful the team at sick kids has been to us so far. We have Dr. Forrest as our plastic surgeon and Dr. Rutka is our neurosurgeon. However, Dr. Forrest in the Cranio facial department is the driving force to all the decisions that are made for Audrey’s care not the neurosurgeon who plays a very secondary role. I wish I had more to tell you about the surgery at sick kids but unfortunately Audrey still has not had her surgery because she needed to have her gastrointestinal surgeries first so she could begin eating properly (currently she has a colostomy that will be reversed the end of March). Once her colostomy heals she will have her hip surgery and be casted for 3-4 months, only once the casts come off can she have the first of 3 head surgeries.
Since we have been through some surgeries at sick kids I would be happy to answer any questions you have about the hospital etc.
Thank you again for sharing this story, I have read everything I can get my hands on that relates to my daughters struggles and the struggles of other parents to make the right decisions for their children. The way you articulate your story has really touched home for me.
Becky – thanks for the feedback on Sick Kids… and thank you for writing about your situation. I’ve been feeling ‘raw’ and ‘exposed’ writing about all of this, and you singularly made all of this show and tell worthwhile.
Please keep reading, and – if possible – keep in touch.
Your courage gives me courage…
Best wishes to little Audrey from Ava in Vancouver. xoxo
To Becky and Melissa…..
I can’t say enough about all the staff at sick kids hospital. Not only did they take amazing care of my baby, they also made sure that I was OK. They go above and beyond the call of duty, I can’t tell you how many emails and calls I have made to them over the past 3.5 years, they always answer me the same day, if not the very next day, no matter how big or small the question is.
The nurses on 8C (the plastic and burn unit) where your baby will be staying after the ICU are so amazing, they are so helpful, caring and understanding.
I know for a fact that Dr Phillips and Forrest are amazing dr’s. I have many friends from cranio kids that have used Dr Forrest and they say how wonderful he is, and Dr Phillips is the same, he has put my mind at ease, he will be operating on my daughter for a 3rd time in a few months.
Both of your babies are in great hands, if either of you want any info on the hospital please feel free to send me an email. jnk2002@hotmail.com
I found myself holding my breath while reading your words. My daughter, Julia, has Unilateral Coronal Craniosynistosis. Her surgery is set for the 25th of this month. I feel so alone at times, sick to my stomach most days and so worried/praying that we have her in the right place, right team of doctors to do this surgery. No one has heard of this condition so I find myself explaining (educating) them on this condition. Even educating the doctors (two different doctors) who told me there was nothing wrong with her and that it was normal swelling. Really? Thank God I listened to my momtuition and got a 3rd opinion when she was just 2 wks old.
I dont know exactly how I found your blog but I did. Your little Ava us a beautiful girl. I will keep her, and you, in my prayers.
Angie – I’m thinking of you and sending prayers for the 25th. We were lucky that Ava was diagnosed right away. Julia’s lucky she has a mom with good ‘momtuition’.
I’m right beside you every step of the journey. xo
Hi Angie – just want you to know we’re thinking about you. I know Friday’s your big day… Stay strong. xo
Brian and Melissa
my thoughts, prayers and love to you! I pray for Ava’s quick recovery and for some extra strength for you two….
Jenxxx
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