Maybe there was a cancellation, maybe someone begged and pleaded to fit us in. Maybe the neurosurgeon had mercy on our situation and asked to shuffle things around so that he could see us. Nevertheless, that Friday morning, we were meeting the doctor who would potentially (and likely) be performing surgery on our baby. I had been hoping and praying for clarity, as we had conflicting suggestions up to this point (see previous post here). This doctor helped to clear things up for us.
Things may sound pretty void of emotion in this post, but when faced with very high-stress or (possibly) traumatic experiences, I often find myself being super rational. It’s like the event is too emotional and that part of my brain temporarily takes a nap and all that energy goes into the rational part. I may fall apart after, but, in the moment I am really tough. Probably not healthy. Don’t judge me.
Anyway, shortly after introducing himself to us, the doctor opened our son’s file. He apologized that he hadn’t gotten to look at the imaging before—something was down. Looking at it briefly, he concluded quite easily that the suture had indeed closed completely and confirmed that our son had saggital craniosynostosis. He even did some measurements and let us know where he stood. He asked us if we wanted him to just explain options or, if we wanted him to start from the beginning as if we knew nothing about his condition. We chose the second option. Do you know that this doctor actually started from the bare bones—like the root word basics. I was there thinking to myself, “this guy is awesome!” In my experience, most health care professionals, even ones that are good and kind, are usually trying to get through their appointments as quickly as possible. You can barely put everything together in your head before they ask you for questions (which you don’t really have at that point) and then they are on their way. After they leave, you then realize how many questions you have, but it is too late, they are off to see someone else and you are trying to make decisions based on what you recall, the opinions of your friends, and Google.
Anyway, I digressed.
We spent over an hour with the neurosurgeon. He was very honest with us. Even though what he told us was really difficult to hear. He told us that our son’s head shape could get worse or it could stay the same; unfortunately, it was not going to get better. His head could just continue to grow long. There is really no way of finding out if your kid would be one of the lucky ones. Currently, there was no pressure on his brain, which was great. Therefore, the surgery is referred to as “cosmetic”, it is currently not interfering with his life from a medical perspective. Intracranial pressure (ICP) is the pressure inside the skull, the brain tissue, and cerebrospinal fluid (CSF). ICP is a common occurrence for kids with craniosynostosis. Babies grow so much in the first two years of their life – it is possible that he has no pressure now, and we leave things alone, only later for him to experience discomfort, pain, etc… and find out there is ICP and surgery is needed anyway. Plus, we’re talking about the skull which protects your brain here. You don’t want to play around with that – what are the long-term impacts if we wait and ICP occurs? Headaches? Nausea? Developmental delays? Ya, no thanks. We had a choice to make.
But of course – nobody ever wants to make hard decisions.
This man was an expert, we were just the parents, we were there for his advice. We asked him straight “what would you do?”
If you have dealt with a lot of doctors and other health professionals in your life, you would know that although they give you a lot of options they don’t want to make decisions for you. That’s not really their job. They want you to do that for yourself. He tried to be as diplomatic as he could – but I didn’t let down. Finally he said:
“If your son was a ward of the state, which he is not, and I was asked whether or not he should have this surgery, I would recommend it. However, as you are his parents, you get to make that decision. If you did not consent, would I petition the courts to have it done? No.”
So, there we were, with our non-opinion opinion. He thought surgery was the best option for us. Okay. Well, now we need all the details of how this was going to go down. Remember that “cute” endoscopic surgery from the previous post? Turns out, according to the CT Scan, my son had a major blood vessel running very close to where they would have to make the cut. Like smack in the centre. Great! Technically, the surgery can still happen as normal. But over the next few minutes as he discussed the procedure, he began to feel more and more uncomfortable with that incision. And the less comfortable he felt, the less comfortable I felt. He admits that he is hesitant about the cut. He didn’t want to get to the OR, make a cut, and then decide that it is too risky, and have to move to the zig-zag procedure leaving him with multiple incisions to heal. He concludes that if he is already uncomfortable now, he will likely be more uncomfortable in the OR. To me, it’s settled. If you’re uncomfortable with that cut, then I don’t think we should move forward with it. But what other options were there?
The ugly ear-to-ear cut. Ugh! We were not big fans of it. We had questions and concerns about it. One of our main concerns was scarring. What if we go ahead and do this surgery? He would have a perfectly shaped head, physical issues would be non-existent but instead he’d have a zig-zag scar across his head. He could be teased (because kids are jerks sometimes), and end up self-conscious. He could develop crappy self-esteem, possibly suffer with social anxiety, or even depression. That wasn’t what I wanted for him. The doctor then asked us if there had been any history of scarring either personally or in our immediate families. I told him about my c-section scar which was now a keloid (I found out more recently, it is actually a hypertrophic scar, which is pretty similar but not exactly the same). There was also an instance in my husband’s family of a keloid scar. Keloids are more common in people of African descent, which both of us are. The combination made it a real possibility for him. Awesome… so we’re dealing with a weird head shape or a weird scar. My husband was concerned about this scar and wanted to know how best to minimize it. Given the various hairstyles he would likely have throughout his life, the scar could end up being extremely prominent. It is after all a scar, hair wouldn’t grow on that. Yikes! Even if we let his hair grow, being curly, it wouldn’t fall over the “zig-zag” incision like many other kids with straight hair. I was concerned too, I guess, but in my head, my baby, unfortunately, was having this surgery. If necessary, I would deal with those bullies, and their parents, and the school… Nobody was going to mess with my kid.
I appreciated the fact that he took our concerns seriously. He noticed that we had a lot more questions. He also noticed that my baby was getting a little hungry, and that it was distracting me. Given that he’s done a lot of these surgeries, he probably knows that nobody wants to have their baby’s head cut open. Even if it is the best option. They need their questions answered and they need to be confident that they have the right information to make those decisions. Given the fact that my son was just a bit over 4 months at the time, I was still exclusively breastfeeding. The doctor asked me if I wanted to nurse him. He told me that they could step out and come back when I was finished or if I was comfortable, I could go ahead, and continue with the appointment. I know this may sound pretty basic, but this meant so much to me. I had a pretty difficult start to my breastfeeding journey (that is also a post for another time), and here is this doctor, moreover neurosurgeon, who wants to give me the time and space to nurse – thus prolonging an already really long appointment, so that I could ask more questions. He could’ve wrapped things up and just told us to e-mail with anything else, but he didn’t. I loved this guy.
To fast-forward, he came up with an idea to go old-school. He would do a cut in the centre of his head going down. If it were, sadly, to keloid, the scar would be less visible going straight down, and a variety of hairstyles would be possible (remember – options). They would still use some endoscopic tools where possible. It would be slightly more invasive, but not as much as the “zig-zag” (ear-to-ear). The whole surgery process would take about 4-5 hours, and we would be in the hospital for a maximum of 5 days, likely less. Following the surgery, he would have helmet therapy for about a year – helmets are about $2,000 each, and there can be multiples over the course of the year. In some places, such as the UK, helmets are not typically used because they are quite pricey and many lack private insurance. They aren’t mandatory, but they have found that they have the best results. Before ending the appointment, he asked several times if we had more questions. He let us know that we could contact the neuro nurse if we thought of something, knowing that we had a difficult decision on our hands. The OR was pretty booked up, and things were a bit time sensitive, but he told us he did not want a response a that moment (what a relief!). “Go home, talk it out, rest, look things over and get back to us”, he told us.
You would think that after that meeting, we had a decision. But we didn’t. We went home that night and held our baby somewhat tighter. We did a lot of Googling, talking and some praying. My husband came across a page where people who did not have the surgery had posted. On it, there was a young woman who was so angry that her parents had chosen not to have the surgery—she thought they were selfish and they ruined her life. A young man had similar sentiments, having been teased and unable to really flourish socially. Hmmm… We didn’t want that; but it isn’t easy to think that you are doing your best for your child, when it is something that is painful for you. We kept thinking about those individuals. The cases of people who waited, and their child was now older and in need of emergency surgery at an age where they would clearly remember a hospital stay and the pain of surgery.
My husband was going to be away for work the entire upcoming week, and we didn’t want to put off the decision that much longer. We would go ahead with the surgery. I didn’t want to be the one to make the call alone on Monday when he was away (I didn’t think I’d chicken out—just did not want to feel like I was putting him under the knife solo), so we called that weekend. It was done.
Sometimes making that decision, taking that first step, is the most difficult part. For me, it was the wait. It could be days, weeks, or maybe even a month before they could get us a surgery date. All we could do was wait… so, that is what we did.
“The surgeon knows all the parts of the brain but he does not know his patient's dreams." ― Richard Selzer