Infantile Spasms, Ben, and God: the complete story

Ever wondered why I haven’t really blogged for, um, a year?

Lemme tell you about my delightful little stinker Ben, who just turned a year old in June.

Here he is, enjoying his cake–or rather, making sure Mommy enjoys his cake, heh heh.

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Looking like he’s the easiest, happiest baby in the world. But no, don’t believe it for a second.

Oh my. Where to start.

First there was the scare when I was 20 weeks pregnant and an ultrasound tech decided that he might have Downs Syndrome (which he didn’t–one of the “mysterious spots” turned out to be his rib, ehem).

Then he was born not breathing, transferred to Lurie’s Children’s Hospital downtown Chicago hours after his birth, away from me, as I felt like my heart was being ripped out of me. I was able to get discharged so that I could get down to Lurie’s the next afternoon, where he spent nine days fighting an infection in his lungs.

Then he came home, and he had GERD (Gastroesophageal Reflux Disease).

Then he had severe eczema, with dragon-like patches of skin on his poor little cheeks that he regularly covered in scratches from his tiny fingernails even though I tried to keep his nails short and fought back the eczema with hydrocortisone.

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“Do you guys have a cat?” asked the pediatrician. Um, no. Just a son who is apparently descended from a dragon, with scales on his face and talons on his fingers.

He had any number of rashes, mysterious spots, fevers, you name it.

But we thought we were finally out of the woods with his health issues. Enter December 2015. He was extremely cranky, and also extremely spaced out and snuggly.

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We chalked it up to his frustration because he was trying his darnedest to scoot around, unsuccessfully.

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I remember Alice’s pre-crawling days as her absolute fussiest times. Will she ever be happy again?, I remember wondering with despair. This must be the same phase for Ben, I reasoned.

Then, one evening in January, Ben was supposed to be going to sleep, but instead was crying in his crib.

“I’m going to go in,” I said.

“No, let’s let him cry it out,” said Adam, my husband.

“No, I just . . . I need to go in.” I remember having this urgent need to go to him. I’m not against the cry-it-out method and have used it for both my kids. But that evening, something told me: Go in.

As I rocked him in my arms, suddenly Ben’s body jerked. Just a little jerk, like a little Koala-embrace moment–his arms and legs came forward towards me, his little head bent briefly. Then he relaxed. Did he get startled? I wondered. It was like the motion Alice used to make when she was really little–the falling reflex. But then he did it again.

“Adam!” I yelled. Adam came in, and we both watched Ben as he had a few more little jerks. After ten iterations or so, they stopped.

“Huh,” we both said. “Maybe some kind of weird hiccups?”

The next day was Sunday. At church, Ben was so fussy we practically rushed out the door as soon as the service was over.

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(and yes, the above picture is actually from that morning)

“Everything okay with you guys?” asked my friend Beth as we barreled past her.

“Something is wrong with Ben,” I said lugubriously. I meant it as a joke, making light of how miserable he was. But I think I said it because I knew it was true: something was indeed terribly wrong.

That afternoon, I was holding Ben by the window when he had another little jerk. I called for Adam and we both, again, watched Ben have about a dozen jerks.

“Huh,” said Adam. “I don’t think it’s anything.”

But I knew something was wrong. (And we are both so grateful for my Mom-sense about it.)

I grabbed my iPhone and closed myself in my bedroom. “Baby having weird spasms,” I typed. Within about thirty seconds, I was watching a video of a baby doing exactly what Ben had just done, and learned it was something called “Infantile Spasms.” That was extremely bad. A link to another video informed me, within minutes, that this was a serious neurological condition that would probably change our lives forever. Ben was not okay. Developmental regression, I read. At great risk for autism, I read. Brain damage. Structural brain abnormalities. Tuberous sclerosis. There could even be shortened life expectancy. This was a big deal. I began to weep. I could hardly bear to leave the room to tell my husband, “Ben has a neurological disorder that will probably change his life forever,” when minutes before, we thought our baby was perfect–fussy, but ultimately just fine.

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We called our pediatrician. I described the spasms. He told us to immediately go to the ER at Lurie’s Children’s Hospital. Ben needed treatment right away. “Take an overnight bag,” he said.

Adam and I loaded the kids into the car and drove to the hospital downtown immediately.

I spent four days in the hospital with Ben, while Adam stayed home with our toddler, Alice, coming to visit us a couple times and staying in constant touch by phone.

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I had weird flashbacks to the nine days I’d spent there, just seven months earlier, after Ben was born. Weirdly, I got the exact same meal I’d gotten during his first stay at Lurie’s–turkey breakfast sausage sandwich with sweet potato hash.

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It was so, so strange, like a deja vu that you suddenly realize is real. And terrible.

Ben underwent myriad tests. MRI’s, EEG’s, blood draws, the works. And I cried and cried.

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The diagnosis was almost immediate: Infantile Spasms. The tests sought to determine the cause, which would inform the treatment. We needed to treat him as quickly as possible since each episode of spasms was causing damage to his brain. I learned about things like hypsarrhythmia, which is a random disorganization of the brain waves, making the baby unable to learn, incapable of processing the world around him. I learned that different things could cause Infantile Spasms, but that the best diagnosis was cryptogenic, or “hidden cause.” A few days later, they confirmed the cause of Ben’s IS was unknown. No malformations, tumors (tuberous sclerosis) or genetic causes–this was good.

The first morning when I woke up in the hospital, feeling despair heavy in my heart, I randomly opened my Bible. I’m not a random-opener-oh-this-means-something kind of a gal, but this time, I happened to turn to Psalm 41. What I read astounded me. I texted this to my sister:

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Was God telling me he was going to heal Ben? No, surely not. But maybe. But maybe not.

Through my time processing what was happening, two things hurt the most:

First, that Ben was suffering, getting shots, IV’s, going under for his MRI, and all kinds of things, and didn’t know why. For all he knew, this was going to be his life forever. He had no idea what was happening–just that he was suffering. And he was a baby, with no concept of time, who couldn’t anticipate when it would be over. This killed me. What’s the point, I yelled at God. Why would you let him suffer when he doesn’t even understand why? How is this a good thing, in any version of reality? How can this be turned to good for Ben. He isn’t learning anything. He’s just suffering.

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Second, that with very likely outcomes of mental retardation and lifelong disabilities, as well as potential autism, I feared that Ben wouldn’t be able to connect with people, which is my life’s greatest joy. During the month leading up to the spasms, he hadn’t been interested in his sister Alice, who he used to laugh with. He hadn’t been interested in interacting with anyone at all. He was spaced out, just sitting there, totally absent. Was this his future? A lonely human, imprisoned in his illness, unable to connect with people? At least let him love, and be loved, and know love, I begged God.

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I listened, over and over again, to the song “Satisfied in You.” The lyrics felt like the cry of my own heart: When I’m drowning out at sea / and your breakers and your waves crash down on me / I’ll recall your safety scheme / You’re the one who made the waves / and your Son went out to suffer in my place / and to show me that I’m safe.

It wasn’t even the promises or reminders of safety that got me–but the line “[when] your breakers and your waves crash down on me.” That was the state of my soul. I felt that the hand of God was heavy on me. That God had unleashed something terrible, and that he was pushing me down, into the deepest suffering I had known, greater than when I lost my baby, greater than my stay in the NICU with tiny newborn Ben. This song helped me acknowledge the depth of my suffering, and how it felt like God was inflicting it.

Are you good? I asked God. Really, are you good? Because it doesn’t look like it.

I don’t want this to be my life, I remember screaming in my head. Forgive the cliche, but it really was like a nightmare I couldn’t wake up from. Something terrible that just kept being terrible every day. I didn’t want this, I thought. I’m about to be the Mom of a disabled child. I’m going to watch him struggle for the rest of my life and his. That’s not what I wanted to happen! I want my kids to thrive and become full, independent adults!

But I also clung to God even as I questioned him. Because what else was there to hold on to? I was completely out of control. My love for Ben was powerless against this illness. All I could do was ask God–but even then, I knew nothing I could say would sway God against his own will. I couldn’t force Him. I couldn’t manipulate him. I could cry out to him as his daughter, but I couldn’t make him do it my way. I’ve never felt so powerless.

The medication, ACTH, worked. Within about a week, Ben had his last episode of spasms. I remember looking at the three vials of liquid in our fridge, 5 ml in size each, and each worth over $33,000. I remember thinking with a laugh, that is our biggest asset right now. Those 15 ml are worth five of our car. Five Honda Fits, brand spanking new from the dealership.

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We injected Ben with ACTH twice a day, into his fat little thigh. It quickly became normal. Load up the needle, sterilize everything, pull his little pant leg down, and jab the needle in. Every day, Ben was miserable. My sister Heidi, who lives in Hawaii and has three boys of her own, stayed with us for a week–I can’t believe how amazing it was to have her just be there while we suffered.

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She spent a ton of quality time with Alice, which both Alice and I soaked up.

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The medication Ben was on, which operates like a steroid, made him fat and vastly unhappy.

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All day long, he was unhappy, blowing raspberries with his unhappy little lips from morning to night.

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And since being on ACTH too long will eventually kill you, we had to visit his pediatrician twice a week to check his blood pressure. Finally it got too high. “Take him off early,” we were advised. But Ben’s follow up EEG showed that the hypsarrhythmia was still affecting his brain wave patterns. Back on the ACTH he went, for about five days of added heartbreak. These extra days, by the way, felt like an eternity. But his blood pressure climbed sky high so we had to take him off again. And finally, thankfully, the next EEG showed a normal pattern.

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A couple days after his last dose, though he was still very uncomfortable and unhappy, we traveled to Wisconsin for my grandma Mama Kitty’s funeral. And that Saturday, on a bright snowy day, was Ben’s first happy day. After an almost sleepless night of fussing and nursing, he woke up happy and smiling. We looked at him in the hotel room, amazed. I’d forgotten what his smile looked like.

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I really mean that. Do you know what it’s like to forget what your baby’s smile looks like?

And let me tell you about the euphoria when you see it again. It was a miracle.

Weird detail: the first day Ben had that episode of spasms, Saturday January 9th, was the same day my grandma Mama Kitty died, at 92 years of age. And the day of her funeral, Saturday February 6th, was the first day Ben was happy and suddenly seemed like he was healed.

And then: a waiting game. To see if Ben relapsed (of which there was a 20% chance). To see if he had developmental delays. To see if he was going to turn out fine and normal, or struggle. To see if he was going to recover the lost ground, from the two months (his month of misery in December and his month on ACTH in January/February) during which he learned nothing, unable to understand what was happening.

During that time, so many people prayed. People in Colombia, Spain, across the U.S. My sister’s sister-in-law knitted Ben a prayer shawl. Friends of friends prayed. Extended family prayed. Everyone prayed.

Every time Ben had a little jerk, hiccup, or bent over suddenly, my heart would race. Is that a spasm? But it never was. Conversely, every time he did something new, made a new sound, moved in a new way, my heart leaped in joy. As long as he was learning, that was the clearest sign that hypsarrhythmia hadn’t taken over again.

He quickly resumed his baby yoga.

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And soon, there was a connection again between him and Alice.

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But every time he had a fussy day, my heart would quake. Are his spasms coming back?

On waves of fear and joy, thanksgiving and also grief, we have ridden all the way into the summer.

The neurologist just told us, in June, that we are outside of the normal relapse window. Could he still relapse? Yes . . . but it’s highly unlikely.

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Now, Infantile Spasms seem like a lifetime ago. Did they really happen? Did that period of our lives really just last a month? Because it felt like years, packed into those weeks.

There were so many miracles: a whole medication fiasco drama (story for another time) in which God did an incredible miracle, bringing medication to our door just in time when we’d been told, with great certainty, that it would not get there in time for Ben’s dose. Another miracle: the fact that Ben only had two spasms before we brought him to the hospital; sometimes babies have spasms for months, and since they don’t look like a big deal, the parents don’t think anything of it. The fact that Ben responded so quickly to the very first medication we tried. God was actively blessing us in so many ways throughout.

So I’d like to say: God healed Ben, I praised him, and now it’s great.

But it’s more complicated than that.

Yes, God healed Ben. But I’ve had a hard time with thanking him. This sounds strange, but follow me for a minute: it’s hard for me to thank God, because he didn’t have to heal Ben. Plenty of children are prayed for, and don’t receive healing. That could have been Ben.

But it wasn’t, you might say.

But it could have been, and that bothers me.

And how can God be good when there’s another mom out there, maybe at the same hospital where I was, praying for the same thing–but maybe God says no to her. Why? Why do babies have to suffer?

I guess I’m still struggling with the gaping feeling of powerlessness. I guess I’m still struggling to answer the age-old question of pain.

I feel like, if I sat down and really put my mind to it, I could write an essay about it, and explain very logically why God allows pain. Humans screw up, we cause pain, our world is fallen. Pain leads us to closeness with Him, which is the most important thing, pain is temporary, and how much sweeter will it be when he wipes the tears from our eyes if we have cried? He has promised to work everything (especially pain, I think) for the good for those who love Him–and yet. My head can answer it, but my heart can’t.

It might always be that way.

Maybe that’s why it’s called faith.

These days (as in, the past two or three weeks), I thank God every day for healing Ben. I joyfully accept his gift to us. But in the back of my mind and heart, these questions haven’t gone away.

I can’t answer these questions. I don’t know why Ben went through that. I believe God is good. Not because he healed Ben, though he did. People die every day–and he’s still good. And it doesn’t always feel that way. So I will question him about it–but I will question him. I will stay in relationship with him. I won’t leave him, though I will probably always challenge him. And because he’s my patient, loving Father, he will always let me. And sometimes, he will answer me. But sometimes, he won’t.

So, faith.

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21 thoughts on “Infantile Spasms, Ben, and God: the complete story

  1. Twinky

    Thank you, Jenna, for the full account!
    I didn’t realize the timing with Mama Kitty’s death date (and my birthday!), but it was so thrilling that he smiled again for the first time at her funeral. It was after the luncheon that Jessica told me that she had this sense that God was indeed going to heal him in answer to all our prayers…
    Just today the gals that work at the orthodontist inquired about Ben, and I was able to share the good news and show them the pictures of Ben that Adam posted today on FB… another evidence of the vast number of people who were praying!
    God is Good regardless of how we feel or even what the outcomes are in our lives. May His goodness settle deeply in your mind, heart, and soul with His peace that goes beyond our ability to understand it. Love and hugs from your one and only Momtaz ☺

    Reply
  2. Kathy Wargo

    Thank you for sharing…I have missed your blog. My heart aches for all you’ve been through. I’m thankful for the ways God showed His mercies to you, and will pray for sweet Ben.

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  3. Ann Smith

    God hears all prayers. What a great story of faith and triumph. He is such a cute little guy. I had never heard of this illness before you shared your struggle. Life is a continuous learning experience, some good and some bad. But always manageable with your faith. What good examples ( Mommy & Daddy) call upon your faith and family.

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  4. Wendy Huffman

    Oh my. Thank you for letting us share in the answer as well as the prayers. Right now I am just thankful I had a full box of tissues in my office! Thank you for being so honest in your sharing this story. Much prayer has come from Nebraska as well…. and will continue.

    Reply
  5. Giselle Argento-Berrio (De la Rosa)

    Jenna!
    It’s wonderful to hear from you again. I’m so sorry to hear about the ordeal you all went through with Ben, thank you for sharing. Sending biggest hugs to all four of you (I can’t believe how big Alice is!), may God continue to bless you all. xo

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  6. Howard Huffman

    Thanks for writing Jenna. It has been said that sometimes our tears water the flowers in someone else’s garden. You have helped my perspective. Thanks again.

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    1. Jenna Post author

      Thank you Howard. Hope you guys are doing well! (and congratulations on your new grandbabies!)

      Reply
  7. Kate

    I’m so sorry you’ve had to go through all of this. And I remember you saying how easy his delivery was! I know firsthand that nothing rattles your faith more than your children suffering. I have screamed at God in my car “Please help her!!” My littlest brother went through something similar with the seizures and I would just caution you to watch his vaccine schedule with his little system so compromised – that’s something that really threw my brother over into even greater difficulties. Maybe they would let you go at a slower pace.

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  8. Merve Demir

    I’m crying now. Actually it’s a good testimony. Thank God now Ben is fine. May God bless this cute baby. It’s amazing how God answers you in a time you need the most. I’m not a mother but I felt you. Thank you for sharing this with us. It’s a beautiful example of faith.

    Reply
  9. Mary Osman

    Hi Jenna,

    Just checking in on your blog again, always love your writing, photos and stories. And wow, this was a powerful one. I am so sorry for all the challenges that you have gone through in Ben’s first year. I know how hard things can be with everything being pretty typical, but you throw a few curveballs in – and whoo boy. Very tough. We had something similar with our 2nd, but not quite the same. I loved the thoughtfulness at the end of your piece. What about the mom whose son hasn’t healed? How does pain fit in our lives, and how do we deal with all of that. Amazing stuff. Keep writing, keep taking care of Ben, and I look forward to hearing more.

    Mary

    Reply
  10. Stephanie-Oh

    So sorry that your little one went through such a difficult time. Sorry for you & your family’s suffering as well. As a nurse, and as a believer in a higher power, I’ve seen so much pain ,but I just don’t believe pain is a punishment from God. I’ve cared for too many truly good people who have suffered. Bad things happen to good people all the time. No rhyme or reason to it. I don’t know why. But when it’s a child, it is especially hard. It makes me angry, I feel powerless. I just try to give comfort where/when I can. So glad that your little man is better & continues to improve.

    n so many

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    1. Jenna Post author

      Thanks Stephanie! I agree–I don’t think pain is punishment from God–not at all. I think saying “I don’t know why” is a very wise (and very hard) thing to say. How beautiful that you try to give comfort where you can–you’ve given some to me by commenting!

      Reply
  11. Lena

    I am sorry to leave a comment as I am a complete stranger. I found your site some long time ago while searching for some receipt. Read the entire first pregnancy story and cute little Alice arriving. not sure why I kept returning to your site, I don’t even know you, maybe it is your faith and love. After your posts stopped and I smiled and assumed you are just extremely busy with two little kids. when I read what happened to your and Ben, I cried. I know I cannot help and am in no position of giving you any advices but just when I first saw little Alice pictured with bright red cheeks, the first though that strike me was what a horrible allergy this little one has. Now Ben’s condition even worse as his little body was loaded with medicine that probably shot down his immune system entirely. if I may, food does matter a lot, especially in developing children. if I would you, I would do everything to start cleaning their system with diet and even fasting, I know from my own experience how much this means and at the same time how hard it is with kids (but not impossible). human bodies are capable of fighting a lot of diseases if immune system is not compromised and the first things that destroy immune system is the medicine and the food, especially American food. May god bless you and your family. Sorry again for leaving this comments and hope Ben, you, little Alice, and your husband are doing great right now. Happy upcoming holidays.

    Reply
  12. VideoPortal

    My daughter went seven days from her first spasm to the diagnosis and control of them. This is unprecedented and a major factor for why my daughter is doing so well today. If Dr. Amador had not done what she did to facilitate the immediate testing and if she had not encouraged us to stay for a second opinion, there is truly no telling how long we would have waited for a correct diagnosis and how much damage would have been done. Dr. Amador is a true hero to us and, in our house, her name is spoken with reverence.

    Reply

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