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MKD: Blogger Neonatal Doc...


 
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jennifergg
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PostPosted: October 18 2006, 4:50 PM    Post subject:
MKD: Blogger Neonatal Doc...
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...brings up an interesting point in his post about The Memory Keeper's Daughter. He feels that the on-the-spot diagnosis of Down syndrome is a stretch. In his experience, the diagnosis is often tricky and requires a karyotype.

My son was seen by a neonatologist, an OB/Gyn, a pediatrician, and another pediatrician. His Apgar was 8/9. no one suspected DS until at five days old, a blood test was requested based on a suspected Simean crease. I have to agree with Neonatal Doc--in our case, the dx required the blood work.

What are your thoughts and experiences here? It's a crucial scene and the whole book hangs on the quick dx by Henry David. What does this say about him, too?

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Last edited by jennifergg on January 20 2007, 2:14 PM; edited 1 time in total
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jooniper
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PostPosted: October 19 2006, 6:20 PM    Post subject:
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Interesting...Our doctors suspected DS right away. Since I was knocked out at the time, I found out about their suspicions the next day. Good point, though. I don't have the book in front of me now, but I don't recall a lot of detail that caused David to suspect DS. Maybe that time in history was quicker to diagnose? I'll have to think on that more.

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wife to Sergei and mom to Elaina (7), Zoya (5 1/2) and Polina (04/05/06 DS)

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ciarrasmom
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PostPosted: October 19 2006, 6:22 PM    Post subject:
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I knew Ciarra had DS from the second they handed her to me. Just KNEW it. I was the first to suspect.

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Suz
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PostPosted: October 19 2006, 6:53 PM    Post subject:
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I think it depends on the experience of your doc with babies with Ds. Also how many obvious 'markers' your baby has. Aaron wasn't diagnosed until he was a month old. He was totally missed in the hospital, but in retrospect, I'm happy about that. It didn't traumatize our birth experience.

Though David was an orthopedic doc...so how many babies with Ds had he really encountered? He said himself he had only helped deliver a handful of babies.

But for dramatic license, Kim Edwards had to create the story around the fact he did recognize Down syndrome when Phoebe was born.

As an aside, does anybody know why Ds is referred to as 'Down's Syndrome' in the book? I'd imagine in the 60's it was called much worse, or at least 'Down's'.
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queenk
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PostPosted: October 19 2006, 7:36 PM    Post subject:
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When the NICU docs pointed out the "evidence" to me I was incredulous that they could be so sure based on such subtle indicators. The geneticist, a few days later, said he wasn't sure that Thomas had DS, because he had so few markers. But then the blood test confirmed it.

David's hasty decision is telling. Perhaps even a medium-high possibility of the diagnosis was enough to send him into a panic. But he did seem very sure of himself...

The time crunch was very significant. I often think of the terrible time pressure that women are under when they receive a prenatal diagnosis. Those struggling with the option of termination are really over a barrel. Given the enormity of the news, even having a week or two to decide is akin to David's split second of choice.

I'm touched by how even a small amount of contact/time with Phoebe affects Caroline. I wonder how David might have felt if he even had a few hours to hold his daughter.

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mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993
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KStrickland10
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PostPosted: October 19 2006, 7:38 PM    Post subject:
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Our docs knew immediately. While they never told me until the next morning, I look back and remember how quiet the room was after Cameron was born. They definitely knew.
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jennifergg
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PostPosted: October 20 2006, 6:31 PM    Post subject:
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What a bittersweet memory. I had five days to adjust to childbirth before I received the dx; you had even less. Thank you for sharing your experience.

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mesmom
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PostPosted: October 20 2006, 9:12 PM    Post subject:
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Every doctor was absolutely sure that MaryEllen had Down syndrome immediately at birth. And I do mean immediately. I would love to know more, like was it the imbilical cord, or was it the head size, or the nuchal fold, or the crease. I would love to talk to them, to understand how they felt sooo sure. It was rather impressive and still is to me today. In fact, even the nurse midwife. I could not have paid a doctor to say she did not. I have to say, now that we are 19 months out, this is surreal, but what was a very shocking experience, is a warm memory for me now. I was told this would happen, and I found it hard to believe. So much in fact that I would try to forget someone said it. But their absolute immediate response is a part of my daughters birth, and it is truly a fine and beautiful memory. So, this was VERY realistic for me. I have found it harder to believe docs don't see it, when every doc and nurse that was around us, told us they were 100% sure, but they would do the testing to confirm. A very memorable experience, to say the least.
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stawal
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PostPosted: October 20 2006, 10:21 PM    Post subject:
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I thought David was awfully quick to make such a diagnosis as well. Especially since he is an orthopedic doctor with his only ob experience being in medical school.

Wil was two months early. He was very swollen when born so his features were a bit distorted. Once the swelling went down the dr.'s and nurses waffled back and forth for a few days on whether or not he had ds. One moment they would say "he seems to have the look" and the next they would say "now I am not seeing it." Part of the difficulty I think was that because of his prematurity he had not opened his eyes yet. The geneticist came around and with a bedside eval said it could go either way so it wasn't until the karotyping came back that we knew for sure.

However I was by his isolette the day he opened his eyes for the first time, my mother and his nurse was there too. As soon as Wil opened his eyes and looked up at us I just knew. I thought I had prepared myself for the possibility but I burst into tears because I was so certain. Once the reality washed over me I found myself feeling fiercly protective of him in ways I had not experienced with my first son. The karotyping came back a week later to confirm what I had become so certain of.

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Wife to James
Mom to Luke 10/02, Wil(DS) 3/31/05, Timothy 9/06
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ImperfectMe
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PostPosted: October 23 2006, 1:34 PM    Post subject:
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I agree the diagnosis was sudden, but it was also the necessary basis for the book. And as some of you have pointed out, sometimes it is apparent at birth. However, I also worked with a girl who had a number of markers (high palet, etc.) and just LOOKED like she had Down Syndrome. However, she is a very typical child in every and all respects.

What if David had been wrong?

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CJ
Mom to:
B (10/96)
E (06/04: DS)
J (09/05: DS)

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