Wednesday, July 26, 2017
So many of my readers continue to ask me when something new is coming out. My last new book was Cold-Blooded and that was released in 2015. Before that, I had something new at least once a year. 2016 was my first year without a new book. Not because I wasn’t working on stuff, but because other crazy stuff was happening in my life. So, if you’re interested in the real reason that 2016 was my year without a book, read on.
In February of 2016, my daughter, husband and I were sitting down to dinner when my daughter reached up to brush her hair behind her ear and realized her earring was missing. On further examination, we realized it hadn't merely fallen out of her ear--the earring had been pierced too low and had actually worked its way out of her ear altogether, leaving her with a cleft earlobe.
We had no idea the crazy path that this small moment would set us on.
We took her to the plastic surgery department at our local Children's Hospital to have the earlobe repaired. During one of the visits to plastics, a nurse practitioner there noticed that her head was an unusual oblong shape. We were approached by the staff there and asked if we would be open to having a CT of our daughter's head performed. We met with the head of craniofacial surgery to discuss the shape of her head. They suspected she had something called CRANIOSYNOSTOSIS. You can Google if you want, but be careful. There are some unsettling surgical images that come up. It's mostly found in infants but occasionally, it can be found in older children. Our daughter was 8 years old.
The skull is made up of plates, the surgeon explained to us. They fit together along these openings. The openings are called sutures. There are several. They all have different names. They're supposed to stay open for various periods of time--each suture closes at a different time. The main point is that they're supposed to remain open for a good deal of time--especially when you're a child--to allow room for your brain to grow. This way, as your brain grows, your skull expands. The sutures accommodate all this glorious brain growth when they stay open. When a suture closes early, it can cause all sorts of neurological problems. Developmental delays, cognitive deficits. If you can imagine walking around all day in a shoe that is too small for your foot, that is essentially what happens to the brain, the skull becomes too small to accommodate it.
Now imagine all the things that the brain is responsible for--it's everything, right? Walking, talking, seeing, thinking . . . everything! So imagine all the things that can go wrong if your brain is being constricted. Believe me, I've thought about it. A lot.
By the way, there’s only one remedy for craniosynostosis. That is surgery. The kind where they take your kid’s skull apart and rebuild it. (In some cases of infants with cranio, they can do a less invasive, endoscopic surgery but for a child my daughter’s age, that’s not an option.)
We agreed to the CT scan. We reassured our daughter that her head was just fine. We would just get this one scan, you know, just in case. Two long, horrific, torturous weeks after the scan (during which I fell and broke my foot; my daughter fell and broke her nose and had to get surgery; and I went to the ER thinking I was having a heart attack to find out I had gallstones and needed surgery) we finally sat down with the surgeon for the results. By that time, blessedly, our daughter had forgotten all about the entire business so we let her go to school while we met with the surgeon.
"Her sagittal suture is completely closed," he told us.
I remember those were his exact words. I remember because the bottom of my world fell out from under me in that moment. I had known. Of course I had known. I had been Googling the hell out of craniosynostosis 24/7 since the first time I heard the word. I hadn't slept or eaten in two weeks, had cried every time I was alone, had been a hot fucking mess the entire time, wondering if my kid was going to need surgery. But hearing it, finding it out, knowing it was real was a terrible feeling.
Our daughter was lucky that she had no cognitive deficits or developmental delays. She had had headaches since age 6 that were becoming worse, more frequent, and debilitating—but the cause of which couldn’t be pinpointed. There was some clumsiness that couldn’t be explained and a few things we didn’t even realize were cranio-related until after the surgery. But the CT told us all we needed to know. There was scalloping on her brain. Her brain was already looking for room that simply was not there.
Then they talked to us about the surgery--the doctor and his nurse practitioner. The words "disassemble the skull" were actually used. They typically did two surgeries--one to address the back of the skull and a second six months later to address the front of the skull although it was possible, at Morgan's age, that she might only need the first surgery. That remained to be seen. They would start with the back. They would have to shave a strip of hair. She would have a very large scar from ear to ear, but they'd open her up in a zig zag fashion so that when the hair grows back, the scar would be less noticeable. (About a week before the surgery, when the surgeon told her it would be like Harry Potter’s scar, only bigger, that sealed the deal for her.) They estimated it would be a five hour surgery. Five days in the hospital. The neurosurgeon would take the skull apart and our craniofacial surgeon would rebuild it.
Lots of stuff went on after that but the short story is that a retinal exam didn’t show any pressure on our daughter’s optic nerve so we were able to wait a few months for her to have the surgery. She was able to finish second grade and have a pretty good summer before we dropped the bomb on her that her skull needed to be reconstructed. We kept it secret from her—and from just about everyone else we knew—for nearly 5 long months. It was hell. I could go on about the feelings my husband and I cycled through. Not just knowing that our child had to have this serious surgery but knowing that until she did, she was a ticking time bomb of sorts. (“I don’t want to upset you,” another cranio mom told me at one point. “But one day she could just wake up blind.”)
Don’t get me wrong. We understand how lucky we are. This was something that was caught before any irreparable damage was caused by the cerebral constriction. This was something that could be fixed. We weren’t looking at an uncertain outcome. We weren’t looking at a terminal disease or an illness or syndrome that would negatively affect her for the rest of her life. We weren’t looking at putting her on a transplant list. There were so very many other things that could have happened to her that would have been a million times worse. Believe me, we saw the parents of children with much more serious health issues every time we went to the hospital. We are grateful—so incredibly, unbelievably grateful—that this was the hand she was dealt. But still, all surgeries come with risks and possible complications. No parent wants to hear that their child’s skull needs to be disassembled. You just don’t. That’s not fun. Not a good time for a parent, much less the poor kid who has to endure it. So let’s just say that it was stressful.
We didn’t tell her until about two weeks before the surgery and she took it better than we could ever possibly have imagined. Of course she did. Because she’s pretty awesome. What she actually said to us after we explained everything to her was, “It’s not cancer.” Even at 8 she had perspective about it. She was brave beyond belief. I’ve never seen anything like it. As an adult, I was struggling with the fact that she had to go through this but she was pretty cool about it. I think what made it easier on all of us was knowing that if she didn’t have the surgery, things could be so much worse. I actually had a dream right after we found out that she was thirteen and having all kinds of neurological problems and we were taking her from doctor to doctor trying to get answers and finding none. That could have been our life. Her life.
The surgery took place on 8/18/16 and it took longer than expected. The pressure in her brain was so great that her skull plates had adhered to the dura covering her brain. So when they took the skull plates off, it lacerated the dura in several places. Thank God and the Universe that our neurosurgeon was able to stitch everything up just fine and she had no complications from that. Still, it was quite scary.
The brilliant craniofacial surgeon reconstructed the back of her skull. Also, they told us that when they took the plates off, her brain was “really squished down in there” and it expanded once the plates were off. So her brain definitely needed more room. We went into the surgical waiting room, surrounded by several members of our amazing family, at 8:30 a.m. and the doctor met with us sometime around 3:30 or 4:00 p.m. to tell us everything had gone well other than the dural lacerations. We had to wait until 7 to see her in the ICU. The scar was something to see. But on the whole, she looked wonderful. It was amazing what these surgeons had done to her skull.
She spent four days in the ICU struggling with pain; noise and light sensitivity; and lack of appetite. She was so weak by the time we brought her home that she couldn’t walk on her own. But her spirits were intact. It was a tough recovery. I won’t lie. The first ten days were especially hard. But then like magic, she turned a corner and things became more manageable. Suddenly she was back to her old self, dancing and playing and joking like nothing had ever happened. Three weeks after the surgery she was cleared to return to school—with some restrictions. She wore a hat over her scar until the hair grew in somewhat and she just got tired of wearing the hat.
We saw the cranial surgeon for a follow-up on Tuesday and he said everything looked good and he will see us in a year. On August 18, 2017, we’ll celebrate her one year cranioversary.
We were able to get through all of the insanity—getting the news, living with it, preparing for surgery, her having the surgery, and the recovery—because we have the most wonderful family and friends anyone could ever ask for. The show of support we received from everyone we know was nothing short of astounding. I can’t even count the moments of love and support that took my breath away—there were so many. It still takes my breath away to think about it. If I spent the rest of my life thanking our incredible loved ones for everything they did for us during that time, it wouldn’t be enough. I wish they could know how grateful we are, and I hope they do. Any time I lose faith in humanity or the fate of the world as we know it, I think about that time in our lives and the way people supported us and lifted us up and I think, we can’t be doomed if there is that kind of love, kindness, compassion and generosity in the world.
So yes, 2016 was a year without a book. I was working on one—little by little when I could concentrate or find time. That book is called Losing Leah Holloway and it will come out in October of this year. But I didn’t release anything in 2016 because the year was so full of blessings, good luck, good fortune, wonderful people, courageous nurse practitioners, amazing surgeons, and one awe-inspiring, fiercely brave 8-year-old that there just wasn’t room for anything else.