Monday, March 23, 2009

What happened to Max: The day we found out that babies can have strokes

When the doctor at the elevator bank told us that Max was having seizures, I started sobbing. Then I saw Max in the NICU for the first time, and it took every ounce of control I had to not get hysterical. He was unconscious, with tubes and wires everywhere and a machine monitoring his vital signs. He was getting heavy doses of two different anti-seizure medications. It didn't make sense—he was just as pink and perfect-looking as he'd been in the delivery room, all 7.11 pounds of him. The other babies were teeny-tiny preemies, jaundiced newborns, babies recovering from heart surgery. What was Max doing there?

We learned that a resident had noticed one of Max's feet twitching. When they hooked him up to a monitor, they discovered his brain was constantly seizing.

We sat there in the NICU next to Max's incubator for the longest time. An NICU, if you've never been in one, is relatively calm-seeming for a place where so many babies are on the brink. Neat rows of incubators, nurses moving with efficiency, the silence broken only by the occasional beeping monitor or weepy parent.

I felt terrible leaving Max there, but eventually we headed back to our room, completely drained. We had to get through what felt like a gauntlet of new mothers strolling around with their infants.

We walked into the room. A couple of friends had sent a huge blue-and-white "IT'S A BOY! CONGRATULATIONS!" flower arrangement. We took one look, collapsed into separate chairs and cried. Straight-from-the-gut, heaving sobs and wails. We got into bed, held each other and cried some more. There was nothing to be said.

There was a chance Max had a metabolic disorder, we were told. They put a rush on the tests. I kept asking, "If it's a metabolic disorder, can it be treated?" Some could, they said. That little bit of hope got us through the next few days. We fended off phone calls from friends who called to congratulate us, although I broke down and told one that Max was having seizures, and we cried together. We told our families that Max was having trouble breathing, that he was under observation, and left it at that.

Friday morning was the MRI. A few hours later, the doctors were ready to talk. As I walked out of the elevator, I saw a group of them standing there. Pediatric neurologists, one of them a founding father of the field and on the elderly side. I stared at him, searching for a sign. He sort of waved at me, which I considered reassuring. You don't just wave at someone unless you have decent news to report, I figured. In those last minutes before we learned the truth, I was clinging to any hope there was to cling to. "Please, please, please, let it just be a metabolic disorder," I mumbled to Dave. "Please please please please please."

A nurse brought us into a room next to the NICU. Dave and I sat down on folding chairs at the end of a long table, held hands and waited for the doctors. They came in and took their places across from us.

The older pediatric neurologist spoke.

"Your baby has had a stroke," he said.

I gasped. "Babies can have strokes?" I said.

He proceeded to tell us that yes, Max had a stroke. A bilateral stroke, meaning it had struck both sides of his brain. It was a large stroke. A "significant event."

"What does this mean?" I asked. I didn't even think to ask how it had happened; I just wanted to know what the future held for Max.

That is when the doctor drew the above sketch. He showed us the different parts of the brain that had been affected—the parietal, temporal and occipital lobes. We were lucky the brain stem had been spared, as that area handles many of the body's primary functions, including breathing and heart rate. I don't believe he ever used the words "brain damage," though that is exactly what had happened. He explained that, as a result of where the stroke had hit, Max might have severe cognitive impairment. That he might not walk. That he might not talk. That he could have vision and hearing problems.

It wasn't just one nightmare scenario. It was every single one.

I didn't even cry; I was too numb. Dave folded his arms on the table and buried his head in them. He's usually such a happy-go-lucky guy, one of the things I've always adored about him. Seeing him stricken with grief made mine that much worse.

The next words that came out of my mouth were so raw, it's hard to believe now that I actually said them. But I did.

"I don't want a handicapped child," I blurted.

"Well," the doctor said, "you could sign a Do Not Resuscitate."

We hadn't even known there was a possibility that Max could die.

After the older doctor left, the young pediatric neurologist and the other one, a woman from Italy doing a fellowship, sat with us. The young doctor told us that babies' brains are malleable. "Plastic" was the word he used. He said that Max's brain had the chance to regenerate, and that while the stroke was severe we should have hope. Because Max needed us to have hope. The other doctor pressed a card into my hand. I think it was an image of an Italian saint who protects babies, I can't recall. I do remember thinking that if she was giving this to me, things must be pretty bad.

At some point while we were in the NICU, hovering over Max, a resident passed by and greeted Dave. Turns out they'd gone to college together. He asked why we were there and we told him that Max had a stroke. "Oh, look at him, he looks great!" he said. Young and naive, he meant it—Max did look OK. We made some feeble joke about Max being the poster child of the NICU, and asked him to see if there was information, any information at all, he could get us. He promised he would, but I suspect he got scared off when he learned what we were really dealing with because we never saw him again.

We finally had to tell our families. It was hard; my parents had been so excited about the birth of their first grandchild. I did not want them feel as wrought as I did, so I tried to downplay the situation as best I could, expressing optimism I did not feel. I called my two best friends and asked them to let people know. Then I made Dave tell the supervisor that I needed to be transferred to a room that was anywhere else but in the maternity ward. Being there was torture.

Meanwhile, I started pumping milk, determined to stock up for Max when he could feed. It was good to do something for him, because looking at him in the incubator left me feeling overwhelmingly helpless. I sat in a worn, tan pleather rocker in a little room, otherwise bare except a table, a pump and a fridge. There were many other bags of milk chilling, milk of all different shades. I'd glance at the bags and wonder what was wrong with those mothers' babies, and whether they were going to be OK. I knew every parent in that NICU was going through their own kind of hell.

Eventually, I found the resident who'd first noticed Max's foot twitching and queried her mercilessly about what she'd seen, and what she thought his future held. She told me about her father, who'd had a stroke and had managed to recover his speech function. It wasn't very reassuring; what connection did my baby have with an old guy who had a stroke? I asked every medical professional I encountered whether they had ever seen a baby who'd had a stroke. All of them said no.

The truth was, nobody could give me the only answer Dave and I wanted to hear: what was going to happen to Max.

Part 3: We take Max home


  1. Thank you Ellen, simply, thank you...

  2. Ellen thank you for continuing to share your families story- am glad to have happened upon this blog so many months ago and thankful for all your advice and good wishes
    Thanks again!

  3. Thanks for taking the time to visit and comment on my blog.

    My stepdaughter had a stroke when she was 16. She's now 23, has 3 kids, but still not much use of her right arm.

    When that happened, everyone seemed in shock it could happen to someone so young. I must admit, it never occured to me it could happen to babies too.

  4. Ellen, you write Max's story so beautifully. I said yesterday that I can relate, but I can't relly relate to the one-two-three cacophany of events you endured. I went home with a baby I THOUGHT was fine. With me, it was the slow realization that something was amiss, rather than the stress of childbirth (in your case, difficult) followed by bad news and then worse news.

    You are a strong mom. You're a great writer, too. Your babies are SO lucky to have you!

  5. Again, you're making me feel grateful that we knew months before Emmett's was born that his actual birth was going to be a nightmare.

    Don't you kind of feel like you have post traumatic stress disorder from this whole thing? I relieve the events of that day all the time.

  6. Hi Ellen.
    I've been reading your blog for a long time now, but never posted. Thank you for sharing your story. My daughter also had a bilateral stroke, and we have a hand drawn picture very similar to yours. You are an amazing mother and truly an inspiration to me!

  7. Once again Ellen, thank you so much for sharing. I can only imagine what you were going through during that bittersweet time after Max's birth. We had 10 blissfully naive months before Daniel was diagnosed, but I remember a lot of those old feelings.
    Max is truly an amazing boy. It's impossible not to feel proud of him, considering everything he has overcome in his six years.

  8. I think we all had that moment where we just simply couldn't believe "this" was happening to us. I look back now and think if it happened again how "seasoned" I would be--how used to tragedy and bad news I've become!

    And while I didn't have the "I don't want a MR child" moment, I had the "I don't want a child who can't walk" syndrome. Oh, how I've learned since then--it's amazing how our children are perfect in their own little ways even though they may be seen as limited . . .

  9. Man. . . and the not knowing is the absolute worst.

    You're lucky you got the diagram. Us, we were in cardiology and they didn't know crap about his brain. . . only that it looked very, very bad.

  10. I hear you on the maternity ward. I was only in the hospital for a day and a half after Addison's c-section because she was across town at Children's, but being on that ward was pure torture....the babies, the sounds, the happy moms in the hall, the little chime that rang each time a baby was born. Just not the right place for a mom without her baby.

  11. wow..your story brings out so much emotion!

    We were told that Kennedy possibly had a stroke in utero...then possibly again last year when she was 6 years old.

  12. Ellen, Thank you for sharing your story. It takes a lot of courage to do so. I know that it must be difficult in some sense to write it down, even though years have now passed.

    I can relate to so much that you write. FOr example, when Elijah was in the NICU, he looked so perfect. He was a whopping 9 lbs. 3 oz. and we'd have parents walk by and say, "Oh, you guys must be almost going home." We'd have to explain, that no...our son had brain damage and we didn't know when we'd get to bring our son home. That stopped the conversation. "Oh", they'd say and walk away not knowing how to respond.

    Somehow these memories don't ever go away do they? But, in sharing your story, you help make moms like me feel not so alone. Thanks for that.

  13. I read that relating to everything you were saying. I have hear almost the exact same words coming from doctors mouths. From signigicant event to babies brains are like plastic. You have come a very long way, and I can only hope to be as positive as you are during our journey.

    By the way, the saint may have been Saint Jude. He is the patron saint of lost hope restoring hope and faith to those that might not have any. Hence the reason we chose the name Jude ;)

    You have inspired me to write out Jude's situation at some point. My blog has gone on for so long it's hard to piece it all together at times.

  14. Wow. I just recently came across your blog, and though I see this series of articles was originally posted over a year ago, I just had to leave a comment and applaud you for being so candid. I too am a mom who didn't have the "normal" birthing experience; my twin boys were born at 26 weeks, both suffered severe complications that caused extensive brain injuries. We lost Michael suddenly in May 2008, and while Aaron is doing so much better than the original prognosis suggested, it is still incredibly difficult to think about, and talk about those early days. I recently started a blog of my own on my journey and have gotten such strength and inspiration from friends and from just hearing the stories of others...I am so glad your blog popped up when I hit "Next Blog". Your little guy is amazing, and so are you...thank you for sharing your incredible story!

  15. Thanks for sharing. Max, Dave and your strength is truely inspiring.

  16. My son was born 6-16-2010 via a repeat c-section. shortly after birth he couldn't keep his o2 up and was jerking so they sent us to a larger hosptial. Once there it was torture. They first thought it was a blood disorder because his blood was thicker than normal, then they noticed his seizures. After that we did the MRI and the next day the nuero met us in the nicu to discuss his findings. I remember I kept asking the nurses about his results and all I was told was the Dr. can explain better than me so we knew something wasn't right. I was sitting in the chair beside his bed and the neuro came in and said your son has had a LARGE right mca infarct which is a stroke. I lost it then and they then asked me did I want to see his MRI. I just couldn't and to this day still haven't. His stroke hit his parietal,frontal, and temporal lobes. I had a great pregnancy also. I am so glad I found your blog. Your son is so cute. Thanks from one mom to another for sharing your story!

  17. I was reading Max's story, and I was just struck by how similar it was to my son's, Isaac. I had an induced labor, I had to be on oxygen, I pushed for a long time (but finally delivered after an hour and a half of pushing.) Later, when he was in the nursery, he started to have seizures with apnea and was rushed to the NICU. We found out later that he had suffered a stroke and was diagnosed with mild cp and epilepsy.

    I am so very glad to see Max doing well! Every time I tell people my son's story they immediately say, "I'm so sorry." Well, I'm not sorry. My son is such an amazing part of my life, and he is healthy. So he's slower than most kids his what? He's a beautiful boy who has taught me so much, and who has made me appreciate the things I never paid attention to before.

    In closing, I want to tell say, thank you from the bottom of my heart for sharing Max's AMAZING story. He is a gorgeous boy, with a fantastic smile who can warm the coldest of hearts.

  18. Thank you so much for sharing Max's story. Again, still a sobbing mess. I wish I could reach out and hug you and Max. You are strong, amazing people.

  19. My youngest son, Phoenix. Who is 10yo now, had a stroke while I was pregnant with him. We found out when he was 9mo old because he was delayed with his motor skills and had a different way of crawling. Turns out that when I stared going into preterm labor at 29 weeks is most likely when he had his stroke. His pediatric neurologist at Dartmouth said my body saw him as defective and was trying to abort. He is a wonderful little guy and caught up with his peers in 3 monthsjust by working with Early Intervention coming to our house 2 times a week. By the time he was a year old he was just like any other kid. We also had no clue that babies could have strokes, let alone while still in utero.

  20. My son recently started having grand Mal seizures at 16 years old. We were prescribed Kepler. We decided NOT to take the medicine and go with a Modified Atkins Diet that entails feeding our son 15 carbs a day with lots of healthy fat. He eats a lot of grass fed beef, free range eggs, organic low crab veggies and is doing fantastic! We could tell a difference in him by the 3rd day. This is not alternative or junk science. Dr. Lewis hill at Johns Hopkins has been championing this diet for years and has been really successful. Doctors are really resistant to this therapy but it works!. Read "Grain Brain" for why it works. He also takes taurine which helped stop the night time teeth grinding, jerking, and unrest in his sleep (also known to stop seizures). And he takes cur cumin as a brain protestant that raises day came across Albert post thanking Dr Lewis hill for curing his son seizure problem, and i got the contact of Dr Lewis hill i quickly contacted him then he made me to know that the medication is 100% permanent cure, and that was how i got the medicine which i used for my son, after which i took my son for medical test It worked! Over a year now, my son have not show any symptoms of seizure and I believe my son is cure if you need his help email him on

  21. Thank you so much for sharing Max's story. As I was reading I could sense the raw emotions coming from your page. You and your son are a beacon of strength and hope for other parents.


Thanks for sharing!

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