Wednesday, November 19, 2008

Flashbulb Memories

Chrystal posted today about a newly published guide for physicians concerning delivering the diagnosis of DS to parents.

In the guide, the term "flashbulb memories" is used. This term refers to events in one's life that can be recalled with almost photographic detail, even years later. Like remembering exactly where you were and maybe even what you were wearing when the events of 9/11 unfolded in NYC.

And the fact is, receiving a diagnosis of Down syndrome for one's child - either prenatally or postnatally - is indeed a "flashbulb memory" for most parents.

My memory is actually a series of smaller "photographs," because we sort of found out about Finn's Down syndrome gradually.

In the first flashbulb memory, I am sitting at the edge of my bed, holding Finn on my lap, facing me. I am wearing a pale blue nightgown with tiny flowers on it (I wore the very same nightgown after Lilah was born). Finn is not quite 14 hours old. Sue, my midwife, is there, also sitting on the bed with me. She had come back to our house for the first post-partum visit. She's talking, but I can't remember what she was saying. I'm looking at Finn, who has mostly slept since he was born. Now he opens his eyes . . . and turns his head just slightly . . . and from that angle . . . a little voice whispers in my head "He looks like he has Down syndrome." I'm certain that my heart skipped a beat. But I quickly brushed the thought aside. It was unfathomable. I had already experienced more than my share of hardship and tragedy during my life - something like this just wasn't in the cards for me.

In the second flashbulb memory, it is only moments later. Sue is examining Finn on the bed. She has text books laid out. I remember thinking, "That's strange. Why is she being so much more thorough examining Finn than she was with Lilah?" I didn't say anything though. Then she shows me the single crease across each of Finn's palms and tells me that I may want to mention those to our pediatrician. "Why?" I ask. Carefully, she tells me, "Sometimes it can indicate certain anomalies." "Like what?" I ask. But I already know what she's going to say . . . because I already saw it in his face. And she says to me, "Down syndrome." I'm certain that I momentarily lost the ability to breathe.

Shortly after that, Finn started spitting up blood and we had to rush him to the ER. By the time we got there, I think I already knew in my heart that he had DS, even though over the next several days I prayed to a God I don't even believe in to please not let it be so.

The next flashbulb memory is this: I'm at home and the phone rings. It is the geneticist. Michael is at the hospital with Finn. It is 4 days since Finn was born, and 3 days since Finn had surgery to correct the duodenal atresia he was born with. I carry the phone downstairs where it's quiet. I sit down on the futon. The geneticist tells me that the workup done on Finn has confirmed that he has Down syndrome. I can't breathe. Tears leak silently from my eyes. A sharp pain radiates in waves from the base of my spine, up through the back of my neck and into the base of my skull. I was not recovering well after Finn's birth, physically speaking, and this radiating pain in my back was a recurring thing. Michael was worried that I may have meningitis. I was starting to think it was my body's response to stress and trauma. I am suddenly in so much pain that I can't speak. I whisper into the phone, "Yes, okay, thank you." I hang up, and start sobbing.

The memories are painful, and I know they will stay with me for the rest of my life. However, I honestly can't think of a way that receiving the diagnosis could have been made better. I am grateful that the first inkling was delivered by Finn himself, and that the second inkling was delivered by my midwife. The geneticist was extremely kind and sensitive, so I have no complaints there. I have said before that I am glad that we didn't find out about Finn's DS until after he was born. I'd like to believe that I would never have considered abortion - I truly can't imagine it. But I also don't know what it would have been like to be told by a doctor, while I was still pregnant, and a doctor who most likely would have advised abortion, as I understand that that is the popular position of doctors. I've developed a growing distrust of doctors - especially OBs, as evidenced by my choice of a midwife-attended homebirth - so I'd like to think that had I been given the diagnosis prenatally by a doctor who would advise termination, that I would have told him to go to hell and stormed out of his office dramatically. Who knows.

All I know is that it happened the way it happened, and really, although the memories are painful, I can't imagine a way I would rather it have unfolded.


Chrystal said...

In a way, I wish my memories were as clear as yours. It kinda makes me feel bad sometimes that I've blocked out the details.

Laurie said...

Oh yes. I don't think I will ever forget that moment when we were told about Dylan.
But you know what's funny? Right after he was born...I mean as soon as they handed him to me after he was delivered, I turned to Dave and said, "Hm, look at his eyes?! They look different.".
So, maybe in my own little way, I suspected something as well?
I like what you said about Finn being the first to let you know. I never thought of it that way, but I suppose it may have been a little like that with D.

Jen said...

I found out about Evan's DS in a completely different way, and I'm so glad it happened the way it did. It's funny how we think that; how we can't imagine it happening any differently. I guess it's one more way we try to see the positive side of things.

We found out prenatally. I am very much pro-choice. And I found out in time to terminate, if that was my choosing. If you had asked me before I was pregnant if I would have terminated a baby with DS, I most likely would have said yes. But once he was there, inside, kicking around, and I knew about his DS, I couldn't imagine doing it.

I think I was fortunate, too, that neither my OB (who is wonderful), or the perinatologist (who delivered the diagnosis), or the geneticist (whom we met with subsequently) pushed for termination. Who knows what I would have done, in that fragile emotional state, if they had? I really can't say. I think that people in that situation are so, so vulnerable, and so prone to be influenced by someone in a so-called position of power, like doctors. It's scary to think about.

Okay. Sorry to blog in your comments! Just wanted to say that I, too, have flashbulb memories, that come back when I least expect it. They are getting less frequent, though, as the years go by.

Hector and Jennifer Varanini Sanchez said...

I love your recap of these memories. So similar to how I felt. I love the idea of Finn telling you first. Beautiful memories and difficult, painful memories all at the same time.

Mrs. Mother said...

I can also vividly remember the day we found out Jenna had Trisomy 18. I had on my striped maternity shirt. I had done two interviews that day.

None of my doctors recommended terminating either, just gave me my options, and Trisomy 18 is pretty much always fatal. In fact, my doctors all said they wouldn't even have mentioned it as an option if Jenna had had Down Syndrome or Spina Bifida.