I’ve been wanting to write this post for a week now. It’s been on my mind; I have been deliberating on what to say, what to share, how to say it. I feel like at most, maybe two, possibly three people read this blog. What do I want to say to that tiny audience? I don’t think I want to point my blog to that audience, I want to write for the world to read, even if it doesn’t. So what do I tell the world? Do I stomp my feet and shake my fist at it? Do I scream about injustice and cruelty? Do I claw at the blind, yet all-seeing eyes of the world and wish I could cause it pain for what I’m feeling? Or do I just weep while I change my son’s diaper and tell him over and over that I love him.
My children are so valuable to me. I love them more than anything, my wife excluded (she wins). My children are the most intelligent, sweet, and loving children I’ve ever met. They’re my children, so they’re not all that athletic. They don’t see Dad doing anything physical, he just works and reads. So they do the same. They go to school and read. They’re reading years beyond their age level, and they don’t even notice.
As my oldest is becoming more and more self aware, she seeks opportunity to help out with the other kids, tries to assume burden from my wife, and offers kind words of support at the most appropriate of times.
My second is still somewhere between a toddler and a little girl, so she’s looking to her mother and older sister for direction on how to be so gracious.
My son is…well…two and a half. So he’s loud, impatient, and I wouldn’t have him any other way right now.
For those who don’t know (and how could you? I don’t blog!), we are expecting our fourth child. We went in for a gender-revealing ultrasound last Tuesday.
Pardon me, but if you don’t know me, you need to understand this: I am a medical practitioners nightmare. I ask SO many questions about the instruments, I ask SO many questions about the tests, if I’m left alone, I’ll actually play with the instruments, I will play with the models, I will read what they’re typing (discreetly), I’ll ask them about their education, the list goes on and on. It’s all about how I deal with stress. I need to ask questions to feel at ease. I need to know a little of what they know to feel like I have an understanding of what’s going on around me. Understand, I know a lot. And that’s on purpose. I need to feel like I understand the world I live in. I need to know why things happen, how they happen, and what happens next. I have a layman’s understanding of a lot of science, more than a bit of psychology, physics, biology, mathematics, computer programming, I have dabbled in real estate investing, mortgage and investment vehicles, I am pretty good at games, puzzles, riddles, and I read an awful lot about lots of things, factual and fictional. So when I’m in a hospital, I’m usually looking for anything that is foreign to me, or isn’t what I’m expecting. So I can ask about it.
Ok, so we’re at the ultrasound. The doctor is out of town, but my wife scheduled the ultrasound with the sonographic technician because we were at the right week and could find out the gender. We took the kids along so they could share the experience. It’s a boy! Yay! And then we explore the rest of the body, doing measurements and visual checks. Here’s his brain, his heart, his legs, feet, hands, face, etc. It’s all standard procedure. Then I notice the technician is back on the brain, then the spine. Then the brain, then the spine. She’s slowly going through the brain, top to bottom, back to top, back to bottom. Then she’s going to the spine, middle to the top, slowly. Back to the brain. Then she’s all done, and towels off the goop from my wife’s belly and says, “Well, we’re going to have you meet with a specialist. A neonatologist. Have you ever been to a neonatologist?” We both said no, and I said, “Why are you sending us to meet with a specialist?” “Oh, there’s something a little different on the back of the brain.”
The little people in my head that raise and lower the red flags are very fast. And the wind was making the flags just snap and flap like there was a Beaufort 10 on the horizon.
So we shuffle the family out into the end of the hallway where you make your next appointment with the doctor. The receptionist says, “Ok, so we’re going to be making an appointment for you with the neonatology specialists at Utah Valley Regional Medical Center, correct?” and she picks up the phone and dials. She’s verifying names and dates and whatnot, and then asks, “And what are you going in for?” I say, “something different on the back of the brain”. She repeats that into the phone, then looks back at us and says, “Ok, but what are you going in for?” I repeat, “something different on the back of the brain,” and my head is rifling through my memories of the copy of Gray’s Anatomy I had as a child, trying to think of what could be different on the back of my future son’s brain. The receptionist repeats it again into the phone, and then asks, “Right, but what is different?” Slightly flustered, I snap, “That’s all she said! She wouldn’t tell us, go ask her!” I’m trying not to freak out, but I’m feeling tunnel vision start to close down on me. She gets up and goes to talk to the technician. When she comes back, she picks up the phone and mumbles two words that made absolutely no sense so paired, “absent cerebellum.”
Suddenly the red flags stop blowing in the wind, and the flagpoles just collapse, crashing to the ground. We stammer and mumble through the courtesies, my wife turns to me and says, “don’t you freak out,” and I tell her I won’t. I can’t because I know she’s going to lose it, so I’ve got to be strong. I push away all emotion and embrace logic.
As we’re walking back to the car, Natalie starts crying, and I’m trying to remember what the cerebellum is responsible for, and how can you possibly survive without one? All I can come up with is you can’t, and this is surely not a viable fetus. The moving arms and limbs we saw in the ultrasound must be just the random firings of a developing brain, like electrical impulses coming off a biological battery or something. Natalie is falling apart, and I’m on the edge.
When we get home, she’s trying to pull herself together, and I’m going to stay in control and do something to the effect of ‘figure it out’. My son needs his diaper changed, and I go upstairs in the hall with him to do so. As I’m fastening his new diaper on, I look at him, and imagine what it’s going to be like in four months when we deliver a stillborn child and start to cry. He stands up and hugs me. While he’s hugging me my breath catches and he feels my chest hiccup. He is learning how to laugh when others do, and he thinks I’m laughing so he chuckles. I love it. When he leans back to see if he was right, he sees I’m actually crying, and starts to ask, “Happy now?” He keeps asking whether I say yes or no.
So that’s Tuesday. It feels like a year ago. The appointment with the neonatologist was originally set for next Wednesday, which is two days from today. I called up and expressed my dissatisfaction with the appointment being so far out, and they agreed to fit us in Friday morning. It actually was a pretty cordial conversation.
Natalie and I had some pretty deep conversations about what the worst-case scenarios would be. You can imagine them for yourself. We determine that we can survive such a situation and will do our best to do so with our heads held high and making the best of it. Anything less than the worst-case scenario would be better, and we would do our best to handle that outcome as well.
Days later, and many shell-shocked stares into space, while conjuring up the most horrible scenarios you can muster from the depths of your brain, we are finally meeting with the specialists. I’ve done all the layman’s internet research I dare do, and think that the technician was looking for signs of spina bifida because she was looking at the brain and the spine a lot, and one sign of spina bifida is a misdeveloped cerebellum, and an unfused spine at the top of the spinal column. A friend from work showed me a site about Joubert Syndrome (I’ve thought of linking to sites with research and foundations for spina bifida and Joubert Syndrome, but that was back when I was thinking of what to blog about). Natalie is enjoying a good hour and fifteen minutes of ultrasounds and they are checking EVERYTHING with great detail and precision.
I ask about the lemon or banana sign (indicators for spina bifida) and I’m wrong. I ask if the doctor is familiar with Joubert syndrome, and she is. And this is not Joubert Syndrome.
She says we’re probably looking at Trisomy 18, or Edward’s disease. At the time, this meant little to me. She went on to explain that there are a number of symptoms for Trisomy 18, and Festus (the name for our children until we name them) is not displaying most of them. What he does have is a VSD heart defect and an under-developed cerebellum. She knows we were told it was absent, but it is not indeed absent, only under-developed. She goes on to say that Trisomy 18 babies often don’t make it to delivery, and those that do don’t usually live more than a month. The other possibility is that we’re looking at an isolated heart defect and an isolated brain development issue, which would mean that Festus has Dandy-Walker syndrome and a heart defect. There are a number of indicators for that, and I won’t go into them all. The doctor tells us the difference between screening tests and diagnostic tests, and there is a diagnostic test that we can do to test for Trisomy 18, an amniocentesis.
We meet with a genetics counselor, and she’s very nice (very tall too), and she retells much of what the neonatologist said in common English. We talk about odds, likelihoods, possible outcomes, etc. We talk about the risks behind an amniocentesis, and Natalie and I decide to have it done. There are two kinds of tests they can do with an amniocentesis, one with quick results (FISH) and one with very definitive results that takes longer. We opt for both.
So, if Festus has Trisomy 18, we may never get to hold him, and we won’t get to see him grow up. If he does not have Trisomy 18, then he does have Dandy-Walker, and he will very likely be born, and grow up. He could have no symptoms at all, or he could be very severely developmentally retarded. Or anything in between. I think I’m eventually at peace with both.
The weekend then comes and there are a few expressions of concern at church. We haven’t told anyone in the neighborhood, but Natalie has alluded to concerns on Facebook because she’s got to vent some of the pressure in her head somewhere. There are a lot of people in our ward that are her friends, and a couple people ask out of concern. We’re trying to keep it on the DL because we feel conspicuous already, and there is a big part of me that is pretty angry. Other parts of me are hurt, scared, sad, frustrated, and confused. I don’t really want ANY of them to be seen.
NOW–Today. Monday. The FISH results would be back Monday or Tuesday, and we email the genetics counselor to call me on my cell with results rather than call Natalie at home. She replies that the results will be in this afternoon and she’ll call. Awesome!
At 4:00 she hasn’t called, and I ask Natalie to give me her number so I can call. I need to know. I would rather them say the results will be here tomorrow than to wait. I call, leave a voice mail. I call again, don’t leave a message. I called again, didn’t leave a message. I clock out at 4:45 and decide I’m going to drive over to the hospital and ask for someone to give me the results. As I’m pulling into the parking lot, the counselor calls me! The news is good, and we are 98.3% sure that Festus does NOT have Trisomy 18. The full results will be back next week, and then we will be 99.5% sure. This lab has never had the full results differ from the FISH results.
I realize as I’m going home that I’m doing 60 MPH on Bulldog Avenue. I can’t get home with the news fast enough! This is fanTAStic news!!!! This is the best news I’ve heard in years!!!
When I get home, we are excited, we’re crying, we’re laughing, we’re celebrating. I decide we’re going to go out and finally buy some clothes for the boy (a tradition we’ve done for each child upon knowing the gender — which we delayed because we didn’t know if we were going to bring a baby home or not — no baby, no need for an outfit), go have dinner with the family, and go visit the temple for FHE.
My son needs a diaper change before we go, and as I’m sitting on the floor in the hall, with my two girls sitting next to me, and I finish doing up the new diaper, I start laughing. I just can’t get over how great this news is! And less than a week ago I was in the same place, crying for the loss of my future child. Now I’m laughing. And that’s where I realize I had no idea it was that bad. I was so ready to lose him to Trisomy 18. And when I realize that my son having an under-developed brain is a blessing and 100% better than I was thinking just an hour previously I have to laugh. I could not be happier.
It is going to be tough. This will be unlike any of our previous pregnancies, to be sure. But I’m going to have another son. And I’ll get to know him, and raise him, and be his father. I will get to bathe him in love, and wrap him in my arms both physical and spiritual. I still want to curse you, world, but that’ll come another day.
I called the bishop to tell him the good news (I don’t think bishops get good news very often late at night), and I said to him, “We’re not out of the woods yet, but a whole lot of the forest was just chopped down”. In fact, I think a nice space has been cleared out for a cabin, maybe a picnic table. This might not be so bad after all.
Let it here be said, and let it so be recorded: I love my wife, I love my children. I am a blessed man.