# My baby girl has Spinal Muscular Atrophy (SMA) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [July 18, 2010, 3:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126 "2010-07-18T15:17:44Z")\ **Posts on this page:** 20\ **Page:** 3
**Author:** ![Contrapuntal](https://avatars.discourse-cdn.com/v4/letter/c/e274bd/32.png) [@Contrapuntal](https://boards.straightdope.com/u/Contrapuntal)\ **Post date:** [July 31, 2010, 10:35pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/41 "2010-07-31T22:35:43Z")
**Bearflag,** Get another opinion. It can’t hurt. Diagnoses are not always 100% accurate. Good luck. ---
**Author:** ![Spectre\_of\_Pithecanthropus](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/spectre_of_pithecanthropus/32/12343_2.png) [@Spectre\_of\_Pithecanthropus](https://boards.straightdope.com/u/Spectre_of_Pithecanthropus)\ **Post date:** [July 31, 2010, 10:47pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/42 "2010-07-31T22:47:10Z")
> [@EvilTOJ](#): > > Joke removed \*\*Moderator Note: \*\* **EvilTOJ** Your sentence is its own contradiction; by telling us what you weren’t going to say you are still saying it. This is a devastating situation for the OP and your joke borders on the jerkish. Don’t do this again. **Everyone else** : I hope I don’t need to remind anyone else not to do this, in this thread. For the Straight Dope **Spectre of Pithecanthropus** ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [July 31, 2010, 11:06pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/43 "2010-07-31T23:06:02Z")
Thank you all for the kind words. My wife just went in for a nap. The baby is fed and asleep. I just had lunch. We are spending our time in sorrow, in shock, learning about the condition, seeking support, spending time with family, and holding our little owl. (We picked an owl theme for her nursery and we hoot at her to try to get her to say who who who.) We got a hold of an SMA support person who is going to put us in touch with others in our area who have been or are going through it. We could use the support. My wife is a teacher and school starts up in a few weeks. She’s afraid she won’t be able to go to work, especially knowing she has a baby at home in possibly in her last days. Our finances will completely fall apart if that happens, so I don’t know what to say about that right now. I am self employed and can’t take time off. So, I’ll have to deal with that somehow. The person we spoke to for support said her SMA baby died at age 2 months and that was several years ago. She did not want to take action to extend her baby’s life knowing the quality of life for the baby would be bad. She knows of someone else who’s baby had pneumonia as a result of SMA. These parents had to decide whether to treat the pneumonia and provide medical support or whether to let the child succumb. They decided to give all kinds of medical support, and that child is now 14 years old. However, the child is pretty much completely physically disabled, on a ventilator, and can’t talk, despite being mentally alert. She said that those parents question whether they would have made that same decision if they had to do it over. If we had to decide today, we agreed to let nature take its course. Meanwhile, all we can do is go through with the blood work. We think that will just confirm the tentative diagnosis though. Our new SMA contact said some other parent had a tentative SMA diagnosis, but the blood work came back negative. However, that baby had a different fatal condition instead. All we can really do is love our little owl and each other as much as possible each day. ETA: Baby’s hungry. Feeding time! ---
**Author:** ![mhendo](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/mhendo/32/3159_2.png) [@mhendo](https://boards.straightdope.com/u/mhendo)\ **Post date:** [July 31, 2010, 11:12pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/44 "2010-07-31T23:12:07Z")
Well, shit, that is fucking awful. My thoughts are with you both. Can’t think of much else to say, really. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [July 31, 2010, 11:13pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/45 "2010-07-31T23:13:46Z")
> [@mhendo](#): > > Well, shit, that is fucking awful. My thoughts are with you both. Can’t think of much else to say, really. Not much more that can be said. The thoughts are appreciated more than the words. ---
**Author:** ![Bam\_Boo\_Gut](https://avatars.discourse-cdn.com/v4/letter/b/8c91f0/32.png) [@Bam\_Boo\_Gut](https://boards.straightdope.com/u/Bam_Boo_Gut)\ **Post date:** [July 31, 2010, 11:14pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/46 "2010-07-31T23:14:42Z")
> [@Contrapuntal](#): > > **Bearflag,** > > Get another opinion. It can’t hurt. Diagnoses are not always 100% accurate. > > Good luck. Early diagnosis has to be a good thing. I’m so sorry this is happening - what a shock. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [July 31, 2010, 11:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/47 "2010-07-31T23:17:33Z")
> [@Contrapuntal](#): > > **Bearflag,** > > Get another opinion. It can’t hurt. Diagnoses are not always 100% accurate. > > Good luck. The pediatrician spotted it. The neurologist confirmed it. The blood work should be definitive. We could ask for another round of blood work, I guess. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [July 31, 2010, 11:23pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/48 "2010-07-31T23:23:07Z")
> [@Brynda](#): > > I am so sorry. Words aren’t enough, but know that a stranger far away shed tears for all of you. Thank you. ---
**Author:** ![Silver\_Fire](https://avatars.discourse-cdn.com/v4/letter/s/a88e4f/32.png) [@Silver\_Fire](https://boards.straightdope.com/u/Silver_Fire)\ **Post date:** [July 31, 2010, 11:23pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/49 "2010-07-31T23:23:18Z")
I hope the tentative diagnosis is wrong. It happens all the time. I hope it happens for you, too. Oh. Your post about the pediatrician and neurologist wasn’t there yet when I opened the thread. 😕 ---
**Author:** ![Caffeine.addict](https://avatars.discourse-cdn.com/v4/letter/c/f475e1/32.png) [@Caffeine.addict](https://boards.straightdope.com/u/Caffeine.addict)\ **Post date:** [July 31, 2010, 11:35pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/50 "2010-07-31T23:35:50Z")
There isn’t really anything that I can say. I’m really sorry. You and your family are in my thoughts. ---
**Author:** ![Rasa](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/rasa/32/3578_2.png) [@Rasa](https://boards.straightdope.com/u/Rasa)\ **Post date:** [July 31, 2010, 11:40pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/51 "2010-07-31T23:40:40Z")
I am too. Peace and love to you and your little owl. Who who. ---
**Author:** ![MsWhatsit](https://avatars.discourse-cdn.com/v4/letter/m/eb8c5e/32.png) [@MsWhatsit](https://boards.straightdope.com/u/MsWhatsit)\ **Post date:** [July 31, 2010, 11:43pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/52 "2010-07-31T23:43:55Z")
Oh my God, I am so sorry to hear this, **Bearflag**. Thinking of you and wishing you strength in the upcoming days. ---
**Author:** ![Spice\_Weasel](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/spice_weasel/32/5435_2.png) [@Spice\_Weasel](https://boards.straightdope.com/u/Spice_Weasel)\ **Post date:** [July 31, 2010, 11:49pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/53 "2010-07-31T23:49:22Z")
There are no words. Just thoughts, love, support. ---
**Author:** ![Omega\_Glory](https://avatars.discourse-cdn.com/v4/letter/o/7c8e57/32.png) [@Omega\_Glory](https://boards.straightdope.com/u/Omega_Glory)\ **Post date:** [July 31, 2010, 11:54pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/54 "2010-07-31T23:54:34Z")
I’m so sorry, **Bearflag**. ---
**Author:** ![Scarlett67](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/scarlett67/32/7387_2.png) [@Scarlett67](https://boards.straightdope.com/u/Scarlett67)\ **Post date:** [July 31, 2010, 11:56pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/55 "2010-07-31T23:56:36Z")
What horrible news. I’m so sorry. My heart goes out to the entire **Bearflag** family. ---
**Author:** ![StGermain](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/stgermain/32/2868_2.png) [@StGermain](https://boards.straightdope.com/u/StGermain)\ **Post date:** [August 1, 2010, 12:04am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/56 "2010-08-01T00:04:43Z")
I’m so sorry, **Bearflag**. My prayers and good thoughts are with you and your family. StG ---
**Author:** ![Diogenes\_the\_Cynic](https://avatars.discourse-cdn.com/v4/letter/d/e99b99/32.png) [@Diogenes\_the\_Cynic](https://boards.straightdope.com/u/Diogenes_the_Cynic)\ **Post date:** [August 1, 2010, 12:04am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/57 "2010-08-01T00:04:53Z")
> [@Brynda](#): > > I am so sorry. Words aren’t enough, but know that a stranger far away shed tears for all of you. Make that two. I’m really, really sorry, **Bearflag**. I can’t imagine what you’re going through. Love that little angel as much as you possibly can. That love will last forever. ---
**Author:** ![mnemosyne](https://avatars.discourse-cdn.com/v4/letter/m/c4cdca/32.png) [@mnemosyne](https://boards.straightdope.com/u/mnemosyne)\ **Post date:** [August 1, 2010, 12:05am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/58 "2010-08-01T00:05:30Z")
I’m so sorry ☹ ---
**Author:** ![Broomstick](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/broomstick/32/246_2.png) [@Broomstick](https://boards.straightdope.com/u/Broomstick)\ **Post date:** [August 1, 2010, 12:09am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/59 "2010-08-01T00:09:19Z")
> [@Bearflag70](#): > > My wife is asleep but I can’t fall asleep yet. > > Office diagnosis: Spinal Muscular Atrophy > > Genetic disorder - degenerative, leading to increased complications over time > > Life expectancy: Maybe 2 years. > > This is just horrible beyond words. Our baby girl. ☹ {{{hugs}}} I wish there was something useful I could say, but all I have is “I’m sorry”. I’m sorry your daughter is ill. I’m sorry that it looks as if you will experience some of the worst pain a person can feel, the loss of a child. But you know there are people who will be there for you. Even total strangers on the internet, like in this thread. You are not alone, even when it feels like you are. Take care. And, again, I wish the news had been better. ---
**Author:** ![Guinastasia](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/guinastasia/32/5751_2.png) [@Guinastasia](https://boards.straightdope.com/u/Guinastasia)\ **Post date:** [August 1, 2010, 12:10am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/60 "2010-08-01T00:10:19Z")
Oh \*\*Bearflag, \*\*, I’m so sorry. [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=2) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=4)