The Bombshell: Our Son has Spina Bifida

“We are never so defenseless against suffering as when we love.” ~Sigmund Freud

In retrospect, we both feel so foolish. For us, the twenty week ultrasound was solely to find out if we were having a boy or a girl. We never imagined we’d get any other kind of news. We never imagined we’d get bad news.

So there we were: Me, on the table, in the ultrasound room, beaming from ear to ear because I get to actually see the little guy squirming around inside of me. I can see him on the screen. It never gets old. It’s amazing. I keep beaming at my husband and saying, “Are you seeing this? Did you see that?” There’s actually a little person inside me. We can see his weird, black, alien eyes right there on the screen. It’s incredible.

The doctor walks in and shakes my hand. He looks at the screen pretty casually and says, “Who was your nurse earlier for your intake exam?” I tell him her name, and he shouts out the door for her to come in. Ooh, I think. Maybe she wrote something wrong in my chart. She’s going to get it. This might be fun to watch. 

The nurse comes in the room and stands behind the doctor and the doctor looks on the screen again.


Your baby has a neural tube defect called Spina Bifida. Do you see that little sac sticking out of his lower spine? That is where the spinal cord hasn’t properly fused together, and his membranes are sticking out of his back.”

I remember shooting a horrified look at my husband. We just stare at each other while the rest of the room falls away. The only thing I can feel is a warm wave of anxiety slowly crawling over me, from my toes all the way up to the top of my skull. That’s what happens every time I get bad news. It’s a precursor to a panic attack, usually — this tingling, warm sensation. And then I feel nothing. Numbness. Lou is standing next to me trying to hold one of my hands. He has to pry it out from under my head, where it’s resting, because I’m just too stunned to move. All I do is stare at him, stare at him. Stare at the screen, the baby. Stare at the doctor.

The doctor is speaking in medical terms, explaining how the spine hasn’t fused, and I’m barely hearing a thing he says. He says one word I understand, though: hydrocephalus. For a terrifying, agonizing moment, I think oh god, is that the one where the baby doesn’t have a brain? Is my baby missing his brain? And then I remember: Hydro. Water. There’s water on the brain. He has a brain. Anencephaly is the one without a brain. So there’s that small consolation, at least. I’m trying to think back to child development class, to the social work classes I took in college. I have heard spina bifida probably a dozen times in my life, but I cannot remember what it means.

“What does this mean, though?” I keep asking. “Like, practically.” I look from him to the nurse to the ultrasound tech, who all stare back at me in sympathy. I get that his spine hasn’t fused. I understand that there’s water on his brain. But, practically, I don’t know what this means for us at all. Is he going to be in a wheelchair? Is he going to be mentally retarded? Will he be born blind, deaf — what? Stupidly, I ask, “Should I buy him clothes?” Meaning, of course, should I even get my hopes up? Is he even going to live that long? 

“I wouldn’t be worrying about clothes,” the doctor says, not knowing what the hell I’m talking about. He goes on to describe the fetal anatomy and he says, “You can also see on the screen here that he’s got clubbed feet.”

“Jesus Christ,” I say, looking at my husband. “What else does he have? Like a second head? Four arms? What else is there?”

The ultrasound tech hands me a box of Kleenex, which is my clue that this is really, really serious news — this is not something that can be undone, or that will correct itself in utero. This shit is permanent. Finally, a lightbulb pops on in my head. I ask the doctor, “Is this something he’s going to be dealing with the rest of his life?”

The doctor looks at me sadly. “Yes,” he says.

I think, okay. Well, that’s some information I know what to do with. 

The doctor keeps talking, and I just keep nodding. Like they’re telling me about the weather. He says, “I can’t even see the cerebellum,” and I go, “Oh, yeah. Mmm.” like I know exactly what he’s talking about and I’m only very distantly, clinically interested. Meanwhile, Lou is actually concerned about me — I’ve forgotten that I’m even in this room. There’s only the baby on the screen. He wants to know if my health is at risk. He wants to know what the risks are for me. The doctor says there really aren’t any. Like I even care, at this point. I just want to know if the baby is even going to survive. Will he just die in a couple weeks, or what? What I’m really asking is, should I even bother to get attached? He tells me that the risk of stillbirth is increased by a factor of five. But that’s not to say that the baby won’t survive.

Additionally, we’re told, the baby may not make it to term, depending on how well he’s doing when we’re monitoring him. The doctor wants me to have an ultrasound every three weeks, and then at the end of the pregnancy, every week. When the baby is born, if he even survives to term, he is going to need two operations right off the bat: surgery on his back so they can shove the spinal membranes back in his body, and another surgery where they place a shunt in his head to drain the spinal fluid, which will be in place for the rest of his life. On top of all this, the doctor tells me I will need to deliver at a hospital in Park Ridge, since it has a neonatal surgery unit. I will also need a c-section. C-section might seem like the very least of my problems — and truly, it is, because the thought of my baby being operated on and potentially not surviving is just the worst possible thing ever, period, end of story — but for someone who developed PTSD the last time I had surgery, it is definitely still a concern.

“Is it the zoloft I’m taking?” I ask. “What did I do?”

“Nothing. Nothing. It is not zoloft-related,” the doctor says. “You did nothing wrong.”

The ultrasound tech takes some more pictures, and then tells us we are expecting a little boy. An afterthought. It’s the least surprising news of the day, actually. We’ve even picked out a name for him — Henry. I find out days later that St. Henry is the patron saint of handicapped people, which makes me want to laugh and cry at the same time. They all leave the room for a minute to see if they can page my OB, and I sit up and wipe the ultrasound goo off my belly. My husband hands me his water bottle and his hands are shaking. I think I’m crying but I can’t really feel it.

Mercifully, “termination” isn’t discussed. I read in the ultrasound notes later that the doctor just didn’t want to bring it up, and he wanted my OB let me know that it was an option. Our obstetrician is a godsend, and thankfully, she knew us well enough that “termination” or “changing the course of the pregnancy” or any such palatable term would never, ever be an option for us. It is, however, an option that exists for us to consider. It’s chilling how subjective a person’s humanity is, isn’t it? Not to get all “lifey” on you, but hey, that’s the reality we’re face-to-face with right now, as parents: If we decide Henry is worth saving (or more accurately, if I decide Henry is worth saving), doctors will move heaven and earth to save him. But if I decide on a whim that this is all just too much trouble, they could refer me up to Northwestern tomorrow and have him wrenched out of me and left to die — at twenty weeks gestation. It’s mind-boggling, isn’t it? I mean, killing someone due to his physiology, his anatomy, his perceived defects — isn’t that able-ism? Discrimination? Genocide? Because it fits those definitions exactly. And it’s all so … encouraged. How do these doctors think of my baby? How does society think of my baby, for that matter? Is he a little boy with Spina Bifida, or is he my property to do away with as I please? Which?

Thankfully, every single person with whom we have shared Henry’s diagnosis has been nothing but loving, encouraging, and supportive of our child. So I’ll get off my soapbox, or whatever, but to clear the air: Henry is our precious son, and we will fight for the best quality of life possible, no matter how long he is with us. Killing him is not an option. He deserves dignity, respect, and care by virtue of his humanity, regardless of his physical ability, mental cognition, race, economic status, or any other qualifying factor.


The doctor asks if we have any questions. “Um, no, not really,” I say, because my mind has gone totally blank. “Yes, about a million,” my husband says, and the doctors nod sympathetically. That is the answer they can understand. If my husband weren’t holding my hand I think I would just float off the exam table and disappear.  They hand us an informational packet on Spina Bifida that clarifies literally nothing, and we wander out of the waiting room and outside to our car. We put June down for a nap as soon as we get home, and then we both crawl into bed and hide under the covers.

For three days after that, I was the walking dead. I cried at everything. We found out a week ago, last Wednesday, and Sunday was really the first day I felt as though I was coming back to life.

Right now, I am still dealing with the emotional aftermath of our baby’s diagnosis. I don’t feel like I’m a complete zombie any more, but I still have moments where the prospect of raising a special-needs child is so daunting I feel like I’m going to pass out. It hits me in little ways, too: When I see June toddling around the house, it’s a knife in the heart to know that Henry won’t be able to do the same thing. When June rolls over and sits up in her crib, I wonder if that’s even going to be possible for Henry, since as far as we know, his legs are paralyzed. It’s even hard to look at pictures of June as a newborn, because I know we’re not going to have that same joyous homecoming — Henry will likely be in the NICU for a few weeks following his surgery, and I’ll be up in Park Ridge recovering from major surgery. Now, I’m vascillating between being optimistic and almost excited to meet my son, just so I can see what kind of challenges we’re in store for. I think, hey, maybe he’ll be relatively normal, like Walt Jr. from Breaking Bad, or Forrest from Forrest Gump. And we’ll be able to like, actually talk and have a relationship and I won’t have to stay up nights wondering how he’ll possibly care for himself when I’m gone. He can be self-sufficient, and inspire other people — and I can help him through everything. He’s going to be kick ass! 

totally me and future-Henry

And then in the next breath, I’m more like this:

What a paradox it is to love and desperately want this little boy, and in the same moment wish that this had never happened: That his spine had fused, that I had known something was wrong, that there was something I could have done. Part of me doesn’t even want to get more attached, because to love someone means to suffer, and if my love for June is any indication, I’m going to suffer so much for this child. And suffering blows. As a Catholic, we know that suffering draws us closer to God and is essential to our salvation; it is gifted to us and modeled beautifully by our savior. So in the Catholic worldview, suffering is a blessing. Suffering makes me cling to Jesus in a way that I never could have otherwise. But can I just say that suffering blows and I hate it? In 2009, when I went to India and read the reflections of St. Therese, I was stuck by her love of suffering, because it drew her closer to the Lord. She actually thanked God for suffering, and so LIKE AN IDIOT I began to pray for suffering myself. God, let me suffer something, I said, so that I can be a saint. So that I can focus on You and only You. And then a week later I got a kidney stone and was like, Nevermind, God, this sucks! I don’t want to be a saint. Changed my mind! Thanks, though! Enough suffering! 

I don’t do suffering well. I don’t want to love this little boy and then have to face the possibility that he won’t survive gestation, or surgery, or some secondary infection. I think about seeing my precious baby, a little boy that will undoubtedly look like my precious husband, hooked up to wires and tubes and my entire body aches. I think about having a c-section and I want to puke. This whole thing is such a gift. If I can use this experience to encourage another mom with a special-needs child, I would feel truly, truly lucky — not to mention the gift that is Henry himself. And at the same time, it sucks. It sucks so hard. I don’t want to suffer. I don’t want to see my child operated on. I don’t want to have surgery when I can hardly handle a routine pelvic exam. I keep thinking, SERIOUSLY, GOD? When June went to the hospital in May for a stomach flu, I cried the ENTIRE way to the hospital. I was shaking, thinking something was seriously wrong. I had to pop two xanaxes and hold on to my husband to keep from running out of the triage room. I sobbed throughout the entire made-for-tv movie about Celine Dion because it was “just so inspiring.” Do you have any idea what a NICU stay and Spina Bifida is going to do to me? Do you think maybe you picked the completely wrong person to go through all of this? 

“Neeeear, faaaaaar, whereeeever you aarrrre”…somebody please CHANGE THE CHANNEL

So that’s where I am right now. Suffering, sort of. With a lot more suffering to come. And I wasn’t even praying for it this time.


This Time Around, part 1

I’ve been thinking a lot about the next baby. Namely, the next baby coming out my va-jay-jay and what comes immediately afterward and how much that’s going to suck. People say you’re not supposed to remember birthing pains or much of the delivery after the fact, but let me tell you that that’s some boo-shit. I remember EVERYTHING.

So I’ve been thinking. And I’ve been making a list of things that are going to be different this time. I’ve learned from my mistakes, you guys. My many, many mistakes.

1. Leaving to go to the hospital. For some reason, I haven’t been able to let this go. Maybe it’s because my husband and I have frequent conversations about listening, and communicating, and how he pretty much does neither, and leaving to go to the hospital was a prime example of this. (In his defense, if you knew how much I talk, and often about shit that doesn’t matter, like the name of Beyonce and Jay-Z’s baby, and which on-screen celebrity couples are actually married in real life, and which high-value coupons I’m trying to find on eBay, believe me, you’d have to start filtering out some information too.)

But leaving to go to the hospital to deliver June was a sore spot for me, for many months. (And I guess it still is, since I’m writing about it fifteen months later.) Since 35 weeks in my pregnancy, I had planned meticulously for the hospital. My bags were packed before the baby had even fully engaged in my cervix. I had the hypnobirth tapes, clothes for the baby, Frasier DVDs in case my labor stalled or I got an epidural and we got bored  — hell, I even had spare change in case one of us wanted to run to the vending machine during or after labor. There was not one thing I had overlooked. And since I’m nothing if not insanely prepared (one instance where having an anxiety disorder actually comes in handy), I had extra clothes, pajama pants, boxers, and toiletries for my husband, as well. And several times over the course of the next four weeks, I would look at him dead in his eyeballs, right into the windows of his soul, and list everything I had packed in my hospital bag, including the things that he would need. This way, when it was really and truly time to go to the hospital, there would be absolutely no delay. When I pulled the trigger, I wanted this gun to go off.

So fast-forward to the evening of June 22nd. Thanks to a pretty thorough cervical check, I had been having regular contractions, about 1-2 minutes apart, for a few hours. They weren’t horrible, like bad period cramps, but (TMI) I kept leaking something that I highly suspected was amniotic fluid. Either that, or I was peeing myself a tiny bit, every time I had a contraction. Wanting to find out what the hell was going on, I turned to Lou, popped a xanax, and said, it’s go time. We need to go to the hospital. Now. And he says, let me start the car. I’ll be right back.

So he heads downstairs and I hear him rustle around in his office for a few minutes, run out to the car, and run back in. Then I hear him in the kitchen. Then the bathroom. Then our room. Then the bathroom again. Still rustling. In the back of my mind, I’m wondering what the hell could be taking so long, but since all of my focus is on not having a complete panic attack and talking myself through these contractions, I hug my body pillow and say nothing. More rustling. I’m slowly counting to eight, and then back down to one again, like the Hypnobirth instructor taught me.

After ten minutes of this, the xanax still hasn’t kicked in, and I call downstairs (in my trying-to-be-patient-but-strained-voice): “WHAT are you DOING down there?”

“I’m packing some stuff for the hospital.”


I’m packing some stuff for the hospital.





My head, at that moment.

Needless to say, I did not have the most mature reaction. I think it was something like “SERIOUSLY? SERIOUSLY? ARE YOU SERIOUS RIGHT NOW? SERIOUSLY? WHEN I HAD THIS SHIT PACKED FOR LIKE A MONTH YOU’RE SERIOUSLY GOING TO STAND THERE AND SERIOUSLY PACK SOME SHIT THE MINUTE I NEED TO BE IN THE HOSPITAL WHY DON’T I JUST HAVE THIS BABY ON THE FLOOR”. Shamefully, my dad was upstairs at the time, watching us get ready to leave, and white with nervousness. He and Lou embraced on our way out the door, and, already outside and halfway to the car, I remember glancing back and screaming “LET’S GO!!! GET GOING!!!” I may have even called him a bitch. That part is hazy.

This time around, there will be no such mistake. His bag will be packed months in advance. I assure you.

2. Imma get me some nipple cream. Let me let you in on a little secret, if you haven’t had a baby, or haven’t managed to breastfeed: Breastfeeding hurts. It hurts so bad. It’s like having someone stand next to your nipples with a lighter and just flicking that thing on every time the baby wants to eat. Pre-baby, when the doctor would ask me if I was planning to breastfeed, I’d be like of course I’m going to breastfeed, why wouldn’t you breastfeed? Formula costs money and also getting off the couch to make a bottle. I’m poor and lazy. Let’s do this thang!

I don’t even have a kid, and I’ve already figured everything out! Self-five!

So the baby is born and I’m like, wow, this is easy! Her mouth is always open and you just mash your boob up to her face and she starts going at it. Awesome! I’m the best mom ever!

Yeah! Grrrl power!

Fast forward just a few days later, and it’s starting to feel like this:


I’m not exaggerating when I say it felt exactly like having your nipples burned off. In comparison, childbirth was a walk in the park. At least childbirth took less than twenty hours, for me. The excruciating, mind-numbing pain that came from breastfeeding took three weeks to die down. And for two of those three weeks, I didn’t even know how to un-latch the baby — I literally just pulled her off my boob like velcro tape. Needless to say, I got mastitis. Which sucked even more.

So, this time around: There’s no such thing as “breast discomfort.” The nurses and lactation people will tell you that “if it hurts, you’re doing it wrong.” And maybe other mothers might try to encourage you by saying that they breastfed and it didn’t hurt, not even a little LOL! And to that I will say

It hurts like hell. It’s torture. Stock up on some lanolin, put an icebag (or six) in the freezer, and ride it out, baby.

Or just have your husband go to Walgreens and get some formula. Whatever.

To be continued.