Wednesday, November 14, 2012

The Bombshell

"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.

Then:

"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.

24 comments:

  1. Your honesty and openness here are just beautiful. I know I've already told you I'm praying for you, but I'll tell you again. Henry is so lucky that you are his Mommy.

    ReplyDelete
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  2. I want more people to see your story.. because you do such a job explaining Love and Suffering in ways that I can't even begin to. Henry is being blessed with some awesome parents, beyond compare.

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  3. You are amazing Sarah. Amazing and strong. Henry is blessed to have a Mom and Dad who will fight for him no matter how much suffering is ahead, because he's a beautiful child of God, deserving of life! My family will pray for your family, I can promise you that. Please let me know if there is anything else I can do for you. Much love <3

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  4. I am the mother of a special needs child. He has completely changed my life, I treasure more, love more fiercely and at the same time fear more. Thank you for your honesty in this article. May God carry you and your family through the hard times with love and mercy. Thank you for sharing.

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  5. Sarah and Lou, You are part of my family (niece, nephew) and I love you guys very much. I admire your decision and the way you write about it. Grace asked Mary and I what we were talking about when we first learned about Henry, so we tried to tell her a little bit. We said baby Henry might not be able to walk or move around as much as the other kids, Grace said " I will play with him on the floor, the best playing is on the floor. " At five, Grace speaks for the family, we'll be with you anyway we can.

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  6. You are quite simply, f#cking awesome. I adore you. Your son is already cooler than most guys and I can't wait to meet him. Your love is boundless. Thanks for sharing it with us, girl.

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  7. Sarah,this is utterly inspiring and amazing.Thank you for sharing and my thoughts are with your family and Henry.That little guy is so lucky to have you as his mom.Also,please consider reading "Expecting Adam," by Martha Beck,it's a great book and I hope you find it helpful.

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  8. Sarah - This story is extremely inspiring. Your son is already so loved by both of his wonderful parents and extended family! He doesn't know how special and cherished he is A girlfriend of mine gave birth to a little girl in March of 2009 who had a heart condition and Down Syndrome. Elizabeth went through 3 heart surgeries and was a growing young girl! She learned sign language to communicate, learned to crawl, walk and eventually Run. Right before her 3rd birthday she had started pre-school for special needs and was even talking! She was a miracle baby. Unforutnately due to catching Sepsis during a May routine procedure to remove her G-Tube, she suddenly passed away. There is not a day that goes by that I don't want to kiss or hug her. I just wish I would have spent one more day with her.

    The reason why I share this is because you don't know how long you will be blessed with Henry. I challenge you to love and cherish that sweet boy each and everyday. No amount of kisses is too much Your story is very inspirational and I want to thank you for sharing.

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  9. I am so so sorry. You and your family, especially your awesome Henry, are going to be in my thoughts and prayers.

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  10. Sarah, I am praying for you, your husband, your daughter, and most of all Henry. Your words are beautiful and touching. St. Henry, pray for us!

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  11. Hello, I'm a friend/colleague of your friend Amanda Connon. She told me to read this and prepare to cry. However, what I see in you is a strength that I do not posess...
    I don't usually comment on things like this, since anything I say will be ridiculous. But...perhaps you are Henry's mom because you are the only person God created to BE his mom....that he needs YOU. I see hard times ahead, but I feel more love coming from this blog than I have ever read. God Bless you and your family.

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  12. Prayer, prayers, and more prayers headed your way. I agree with Unknown, I see strength in this. I see a great willingness to love, even if it hurts, even if it breaks your heart. Is there fear? To be sure, but the love I see in this is greater than the fear, otherwise termination would have been an option, otherwise you wouldn't even be writing this post. You wrote this for reasons that are all your own, and yet I think you wrote this, at least in part, because you love dear Henry, you want to share his story, and ask for prayers for him and for your family.
    St. Henry, pray for us!

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  13. Thank you for sharing your story with such candor.

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  14. Get a second opinion on treatment. Fetal surgery may be an option. This blog http://catholiccafeconleche.wordpress.com is a Catholic couple who went through the same thing you are dealing with. Their daughter is beautiful and thriving.

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  15. You and Henry will be in my prayers! I just wanted to second Emily G. and say that they are now doing in utero surgery for spina bifida, and it has been life changing for the babies! Their spinal fluid is able to normalize while still in the womb, and they are often born completely healthy. You might have to travel to a special doc, but it is worth checking into. God Bless-Renee

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  16. This might help you to see your not alone.

    http://theblessingofverity.com/2010/02/day-one/

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  17. Not only will Henry survive, but he will THRIVE!! My husband and I were in your shoes 3 years ago this week. We were told our boy would "be incompatible with life and should be terminated." He is smart, funny, cognitively advanced, talks in complete sentences, walks, runs, jumps, climbs, and dances. Not too bad for a kid born with a hole in his back! I can't wait to see pictures of a full-term baby boy! :)

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  18. I wanted to reach out to you after reading this, tears still a little in my eyes, because I've been there - right there, pregnant, figuring out how to grieve and love at the same time, all the while trying to keep up with my already-born toddler who I imagined my son would be everything like and now may be nothing like. Our diagnosis wasn't the same one - they told us part of his brain "may or may not be there," nice huh? - but it amounted to the same uncertainty and fear and suck-ness. I agree with everyone else, too... That little boy of yours will surprise you over and over again! Raising a special needs child (whose brain is, in fact, all there, but who had other issues going on) is a roller coast, and in the early years especially I had moments of "I CAN DO THIS!" followed quickly by "Oh God, whyyyyyyyyyyyyyyy?" It also, however, makes you appreciate every little victory, milestone, and moment SO much more, and there will be a lot more joy and amazement and wonder in your life because of Henry.

    Much love and many prayers for you guys! Never feel bad for grieving the "could have beens," and for wishing it was different - that doesn't mean you love him any less. My son is 4 and a half, and I love him to pieces and he's doing great, but I'd still go back and undo the virus that left him special needs if I could.

    Good luck <3

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  19. Oh, Sarah. I'm so sorry. I am going to start praying for you right now, I only wish I had seen this sooner. Please know you are really, truly amazing. And this post, while obviously heartbreaking, is so beautiful. I will pray that God strengthens you for what's ahead.

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  20. Love winging it's way from England. You are a strong family, you will make this work xo

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  21. Wow, an emotional read! And all the more so for me as I went through a very similar thing... In fact, looking at the dates our 20 week scan was exactly 2 days before yours in November 2012. We found out our 2nd child and 1st son Jasper had club foot and a further scan showed up other markers indicative of a chromosomal or genetic condition. No definitive diagnosis... and actually, he's now 2 and still undiagnosed! He has a genetic muscular disorder and is the most amazing, bright, charming little guy I've ever met. It's been a challenging 2.5 years but he's changed my life for the better in so, so many ways. Like you, I expect, we had a very scary and stressful pregnancy after being told his chance of stillbirth was significantly higher. In fact we very, very nearly lost him at the end but mama instincts saved him. I'm looking forward to reading more of your blog! Lots of love from a few thousand miles away. P.s. I'm another Sarah too. :)

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