“This will be the worst news you’ll ever receive.” The neurologist at New York Presbyterian said something along those lines when we sat down together in the family lounge of the pediatric ward, just a few doors down from where our 6 month old daughter was being babysat by her nurses.
It was a hot, sunny Saturday--a beautiful day--but years from now, when we look back on this moment, all we’ll remember about it is how cold and empty we felt. Dr. Kosofsky went on to tell us that our baby--our precious baby--was diagnosed with Infantile Spasms.
He didn’t have to tell us what that meant. We had done our homework before we brought her in.
T. and I held each other’s hands in silence. I don’t know if the doctor had expected us to cry just then, but we didn’t. We couldn’t feel it yet. “It’s good that you’ve read about it already,” he said, “You already know what to expect.”
But we didn’t know what to expect. We’d read about it, sure, but we were in denial. Up until that moment we were still certain that, even though the diagnoses fit our daughter to a tee, even though there was no other explanation that made sense, this couldn’t be happening to us.
Infantile Spasms is a cute name for one of the worst kinds of epilepsy. It’s rare, only 2,500 new cases occur in the US each year.
The “spasms” as they are called, are often subtle and hard to detect. The first spasm Baby J. had looked like a regular, jerky, baby move. She was sitting upright (with help) on the living room floor and she suddenly shrugged her shoulders and leaned back. She did this a couple of times and we said to each other, “That’s a funny move, she’s never done that before.” And we forgot about it. Until the next day, when this tick became more pronounced, and rhythmic, occurring in episodes. I noticed that with the shrugs, J. was pointing her toes. Her eyes became glassy. And with her third and fourth episodes, she cried between the spasms. Something was not right.
T. took J. to the pediatrician while I was at work. When I got home he informed me that Dr. Nick wanted us to take J. to the ER so we could be admitted as quickly as possible. No time to wait for an appointment. We hastily packed our bags and hopped on the subway.
J. was admitted and hooked up to an EEG right away. An electroencephalogram reads brainwaves. J.’s read like seismograph during a magnitude 8 earthquake. What should have been even peaks and valleys, were high points and plummets, all mixed together and crossing each other. I didn’t have to know anything about EEG readings to know that hers looked bad.
We were placed in a room with a camera where J. could be observed. We were directed to press a button if we saw a spasm which would mark it on the EEG . We were given a hard, pull-out chair to sleep T. and I both, about ⅔ the width of a twin bed. We were exhausted, but we hardly slept.
At one point I remember waking up in the middle of the night to see six doctors quietly discussing J.’s EEG in the dark. I’ve never seen so many doctors in one room. I knew at that moment that our lives were changing.
The next morning a nurse came in a said that the pediatric neurologist would be coming by to take us elsewhere to talk, and that she would stay with J. Shortly thereafter, we were escorted by the attending pediatric neurologist and his resident to the family lounge at the end of the hall. T. and I held hands. I looked at him and said, “This is not the Good News room.” I expected him, ever the optimist, to allay my fears and tell me that it was going to be fine. To give me some other reason they wanted to discuss J. with us privately. He didn’t. Instead, he simply said, “No, it’s not.”
We didn’t have many questions for the neurologists. Only one, in fact: “What do we do next?” He told us mostly things we already knew. J. would need more tests to try to determine if there was a cause for her IS. He told us that if a cause is found, it’s called “symptomatic” IS. He felt strongly that J.’s case would be symptomatic because she was already experiencing some delays in her development, and she has vision problems (I’ll discuss this in another post).
However, if a cause couldn’t be found, it could be called “cryptogenic,” for which the prognosis is typically better.
J.’s MRI was scheduled for the following Monday. She would remain on the EEG until then and we would start the dreaded ACTH as soon as possible. When the neurologists left, T. and I held each other. We cried then. We called our parents and asked them to come. We called our employers and told them we didn’t know when we’d be back to work. We put our lives on pause, and asked our families to do the same.
Our daughter was sick. Our impossibly beautiful baby girl. It was hard to go back to her. I didn’t want to look at her differently than I had before. I wanted her to be the same.
Even so, the moment I stepped back into my daughter’s hospital room I pulled myself together. I picked her up and kissed her, I smiled, I bounced her. I didn’t let her hear in my voice the pain that was in my heart.
The first few days with J.’s diagnosis were, of course, the hardest. I found myself desperately wishing we could just go home and pretend none of this ever happened. T. and I even joked (very morbidly) about the three of us jumping off a bridge. All kinds of terrible thoughts run through your head. You think about all the really half-witted parents you know who were somehow blessed with perfect children. You think of all the things you might have done wrong during your pregnancy. You ache for a reason. Why is this happening to us? I kept thinking, if only we could start all over again, have a different baby . . . but that killed me. I didn’t want a different baby. I wanted my baby, I just wanted her to be well. People are not fooling around when they tell you receiving news of this magnitude is like being stuck in a nightmare you can’t wake up from. That is exactly how it feels.
As I write this, we have now had two weeks to digest. We’re back home and navigating the Early Intervention process. The one good thing about a serious diagnosis such as this is that we don’t have a lot of time to feel sorry for ourselves. This isn’t happening to us, after all, it’s happening to our child, and she needs us to do all of the appointment-setting, organizing, research, and phone calls for her, and there is a whole lot of that. Most importantly of all, she needs our unconditional love, because she didn’t ask to be born, but she was, and she didn’t ask to have a medical condition, but she does. It’s unfair for all involved, but for no one more than my Goober Pea. It’s easy to be strong for her. It’s my #1 job, now and always.
So, when people ask me how we’re doing I just say, “We’re taking it one day at a time.” That’s all we can do. Life goes on.