The Story of Emmie-Rose

This is the story of a little girl that came into this world way ahead of schedule. Now fighting day by day until she can be home with her family. This is Emmie's story. From 23 weeks old on...

Friday, September 08, 2006

Sep 8 - Major Blow to Patient Care

Friday 9/8/2006

Today Emmie-Rose’s Hospital has hit a major blow against us.

I believe some of the staff believe we are not providing the correct care for her and had us meet with the “Ethics” committee.

At most hospitals the Ethics committee is usually made up of staff, social workers, clergy, and parents of other children.

We had a room full of the staff, 1 surgeon, 2 social workers, and Stephanie and I.
Let’s just stack all the cards against us.
After wasting 2 hours going over the issues, it is their Ethical recommendation to not continue life saving treatments to our baby!
This includes vent support which she has been on since day one.
Why don’t you just turn the knife back and fourth after you stick it in our hearts!
According to the committee we as parents of our child can not tell the U of M Doctors how to provide care to our child. They reserve the right to discontiune support when they feel like it.

They have not fed Emmie-Rose since 9/3/2006!

She had physical therapy this morning with NO problems. They moved her all over, pulled her legs in and out… no changes in facial expressions, no changes in heart rate etc. SHE WAS FINE!

Now they dropped a bomb on us like this! What the Beeeeeeeep!

I spoke with some other doctors tonight at some different hospitals that seem more willing to be able to work with her condition but they want to wait until Monday to see how she is doing before agreeing to a transfer.

I probably can not get a restraining order until Monday as well to keep the U from pulling the plug on her without our consent and give her food.

Help! Tammy can your connection help us get one ASAP?

I never thought I would be the voice for children that can not speak for themselves but here I am. Betty thanks for doing some research for us while the hospital had our hands tied wasting time.

Thanks to everyone that has helped get this little girl to where she is today!
We are not cruel and mean parents; we just want to give a fighting chance to our daughter, which despite the odds against her, keeps pulling thru.

Keep the prayers coming! We know they are working!

Love Chris & Stephanie

25 Comments:

  • At 9/09/2006 03:38:00 AM, Blogger Khyricat said…

    OMG! I am in shock- they have had her at least on an IV if they haven't been feeding her, correct??? They aren't actually starving her to death???? if they are and without parental consent- you have one heck of a lawsuit against them whether she makes it or not I'm pretty sure... I'll call my FIL, this isn't his field of expertise, but I'm sure he will know something... I wish I could do more for you....

    *hug*

    Amie

     
  • At 9/09/2006 05:20:00 AM, Anonymous Anonymous said…

    I'm so sorry for how this is unfolding. But I definitely don't give up hope. I know Emmie Rose and you guys haven't. I'm praying for your little angel. Hang in there, Chris and Stephanie.

    Missy (cousin Kris's online friend)

     
  • At 9/09/2006 07:53:00 AM, Blogger suegene said…

    This is absolutely terrible! How can they not have been feeding her and not have told you this before? Wow!

    Continuing to pray for you and for Emmie Rose.

    Suzie (Dawn's friend from Ohio)

     
  • At 9/09/2006 08:20:00 AM, Blogger none said…

    What about this? Has anyone suggested it? FOund it here:

    http://healthgate.partners.org/browsing/LearningCenter.asp?fileName=102760.xml&title=

    Surgery: Surgery may be necessary to remove the diseased part of the intestine or bowel. Sometimes the healthy parts can then be sewn back together. If they can’t, part of the intestine or bowel may need to be re-routed to another area of the body where waste products can be removed.

    Jennifer
    My prayers are with you

     
  • At 9/09/2006 08:31:00 AM, Blogger none said…

    Is there a name for what she has? Is this it:
    Necrotizing Enterocolitis

    There is info here:

    http://kidshealth.org/parent/pregnancy_newborn/medical_problems/nec_p3.html

    http://www.sph.unc.edu/oce/phnceac/babyguide

     
  • At 9/09/2006 08:56:00 AM, Blogger cyannella said…

    >>Is there a name for what she
    >>has? Is this it:
    >>Necrotizing Enterocolitis

    Yes, or NEC for short.

     
  • At 9/09/2006 11:11:00 AM, Anonymous Anonymous said…

    I am an online friend of your cousin Kris and have been following Emmie-Rose since she was born. She has been such a little fighter and has wonderful parents to help in her fight. I cannot believe they have not fed her since 9/3 without telling you. I sat here in tears this morning reading what they did. This is horrible. I wish there was something more I could do to help you, but all I can do is send my continued prayers and hopes for all of you.
    God Bless You, Mara Lopez

     
  • At 9/09/2006 11:55:00 AM, Anonymous Leah said…

    We are just sick reading this today. You guys need immediate Legal help. U of M can be SO cold and this is just over the top. Were you aware that they were not feeding your little girl? Do you have a local attorney? Have you thought about calling Newspapers/News Channels and get the story covered. Wish we lived closer so that we could help. We are praying that someone will step in and get them to do what is right for little Emmie Rose and not think about the financial obligation..grrrr!

     
  • At 9/09/2006 12:27:00 PM, Anonymous Anonymous said…

    not feeding her?? w/out your consent? that HAS to be against some sort of law. there's no sense in starving the child, esp. if she's getting better! i've been reading for about the last 2 weeks now. and my heart goes out to you and your little girl. they don't have the right to determine what happens to her.. you do.. you're her parents. not them. stupid drs. stupid hospital. i hope you're able to get her moved out of there and into a QUALITY facility soon! God bless!

     
  • At 9/09/2006 01:05:00 PM, Anonymous hayley said…

    your right steph yooh needa be the voice for the lil kids who cant do it themselves.&& i swear if the dont start doing things correctly around there.hayley is going to flipp lol well we are all praying over here && yooh know if yooh need us we will be there in a heartbeat.i love yooh soo much && i love emmie rose <3

     
  • At 9/09/2006 02:03:00 PM, Anonymous Anonymous said…

    Chris & Steph-shocked us an understatement!! there has to be something that can be done. i dont believe that they can make this decision for you. I thought it had to be the parents. I will keep the prayers going here for you all!!!!
    love and prayers
    shellie and tony
    willoughby

     
  • At 9/09/2006 03:16:00 PM, Anonymous Anonymous said…

    My prayers are with you now more than ever!! LIttle Emmie Rose is fighting! The Dr's and nurses need to see that and fight along with her!

    Sending tons of prayers your way.
    Amy (online friend of Kris)

     
  • At 9/09/2006 05:25:00 PM, Anonymous Anonymous said…

    I'm keeping Emmie Rose close in prayer.

    Linda (JL friend of Dawn)

     
  • At 9/09/2006 07:35:00 PM, Anonymous Anonymous said…

    We are so very sorry to hear this news. May Emmie be in peace .. .. .. ..

     
  • At 9/09/2006 07:55:00 PM, Anonymous Anonymous said…

    Wow.
    I'm speechless at these turn of events. Not goving her nourishment without concent like that is awful. Poor thing. My prayers for her and the family. Good thing she is full of LOVE offered from family and complete strangers. That can sistain anyone thru the worst of times.

    Sara
    (Dawn's JL friend)

     
  • At 9/10/2006 03:51:00 AM, Anonymous Anonymous said…

    This is so sad...

    I just wanna tell you that I'm keeping your precious daughter Emmie Rose in my prayers. I feel in my heart that she is going to be OK. Just look at her, she is a real fighter! Born in week 23, that's unbelievable..

    Keep fighting Emmie Rose!

    Hugs, Veronica (JL friend of Dawn)

     
  • At 9/10/2006 04:21:00 AM, Anonymous BigRed said…

    As far as I know an Ethics Committee cannot just up and decide to discontinue care, and carry it out , without any kind of legal order. And if they can get one, so can you!

     
  • At 9/10/2006 01:42:00 PM, Anonymous Cousin Kris in Florida said…

    No one was allowed to pull the plug, or starve Teri Shiavo here in Florida when her husband WANTED to have her feeding tube removed because the woman was clinically brain-dead for some 14 years. Her parents, who were not her legal guardians, put up such a legal fight for what....3 years after Michael decided to let her rest in peace. You might look up some of the litigation on that case, and see how Teri Shiavo's parents were able to fight Michael.

    (You know it's possible that some of the nurses wanted you to go to that comitte so you can find out that they were told to take her off food. Maybe some of them ARE on your side, but they just can't tell you that).

    This child is fighting...and it may be for a reason. It may be that there's a miricle on the way...and she needs to hang on until then. She needs to be given a fighting chance. U of M has given up on her...so that's not where she needs to be. You are so right in trying to get her transferred out of there and ordering proper care for her, and seeing if a transplant can be possible.

    I have a hard time beleiving that U of M can LEGALLY starve that child to death, and withold care from her. Check the listings in the area for a local paitents advocate group...or a right to live advocate group.

    You might need to have someone, like an advocate for life posted near her at all times to make sure they don't do other things. Like not allowing her proper air or whatever, to make it "look like" she died of something that "could not be helped". Call around and see if there are any advocate groups that would do that. It sounds like they feel this child is using up too much of thier money and resources, due to hanging on longer than they thought she should. Well that's just too damn bad for them! They are bound to a certian code of ethics as DOCTORS! And they call thier committe an ethics committe??? What a joke! I'm so mad about this situation, I'm seeing red. Since learning that they have not been feeding her....I don't trust them whatsoever! I don't trust them to give her the proper air, food, care....ANYTHING! I don't trust thier opinions that her entire lower instestin is gone! Good thing I'm not there. I'd do you guys no good screaming at those doctors for starving that child to death without the families consent. That wasn't one of the choices that they offered you when they said you had three choices. I don't know how you managed not to get up out of the chair and punch the Doctor's face for doing that to your child. I can't say I would have been able to have that much control.

     
  • At 9/12/2006 11:10:00 AM, Anonymous Anonymous said…

    Chris,
    Besides legal help, you might want to talk to a newspaper or radio station (or at least tell the hospital people you are planning to). A little negative publicity can go a long way.

    Still praying!
    Virginia Murphy
    Hope Clinic

     
  • At 9/16/2006 11:45:00 PM, Blogger Denise said…

    Please, please keep fighting for Emmie Rose. Do not let U of M Hospital get away with this.
    I am praying you are victorius in your fight for your little girl.

     
  • At 9/18/2006 08:27:00 PM, Anonymous Anonymous said…

    Can you MOVE her? Maybe to a Catholic hospital with a good nicu unit? Praying!!

     
  • At 9/18/2006 08:30:00 PM, Anonymous Anonymous said…

    Khyricat's idea of threatening them with a lawsuit is a good one --

     
  • At 9/22/2006 10:29:00 AM, Anonymous Anonymous said…

    Just wanted to clarify that TPN nutrition is given IV and can be very damaging to the liver, and a baby in her condition may not have been given it right after surgery because her body couldn't have handled it. I hope they continued at least sugar water IV.

     
  • At 4/10/2010 10:38:00 AM, Blogger Ryuu said…

    Ok, I dont know the entire story behind this, but I know that as the childs legal gaurdians, the hospital can advise you to have things stopped, but my law only you can have feeding or support stopped. I used to work in a hospital, the only time the ethics commitee had any say in the overall treatment of anyone beyond giving advise to the family and Dr. was if no legal gaurdians could be found or contacted, John or Jane Do cases. I wish you and your daughter the best of luck in all of your upcoming trials.

     
  • At 10/19/2010 08:47:00 PM, Anonymous Anonymous said…

    IGNORANT IGNORANT IGNORANT IGNORANT PEOPLE

     

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