Non-viable baby, born alive -parent won't hold him, what do you do? - page 10

OK, so here's what happened - and it's not the first time we've had this dilemma. We had a pt come in with severe, unmedicated schizophrenia, homeless, and imminently going to deliver a 21-22wk... Read More

  1. by   Q.
    Quote from Altalorraine
    Believe it or not some people think it is a sick, grotesque mockery to diaper and dress a dead or previable fetus. People are no doubt well intentioned, but any one person's passionately held beliefs may not be shared by others, including the parents. People can be sentimental about beating hearts regardless of whether there is an intact nervous system, but the absence of such sentimentality does not equal callousness.

    Altalorraine
    I don't know.

    It's one thing to find it sick and grotesque to go through the whole dressing and photographing of a dead fetus, which is actually a baby now that it is born, but another to leave this human being to die in a dirty utility room, no matter what the gestational age.

    Nervous system intact or not, I DO find it callous that any human being could not acknowledge a human life, no matter how fragile, fragmented or deformed, and no matter whether or not the baby registers that it is alone or not. Just because the baby doesn't realize (s)he is dying in a dirty utility room doesn't mean it's right.
  2. by   wannabeL&D73
    Quote from Altalorraine
    Believe it or not some people think it is a sick, grotesque mockery to diaper and dress a dead or previable fetus. People are no doubt well intentioned, but any one person's passionately held beliefs may not be shared by others, including the parents. People can be sentimental about beating hearts regardless of whether there is an intact nervous system, but the absence of such sentimentality does not equal callousness.

    Altalorraine
    The mothers I know who have actually experienced such a loss do not consider it a sick and grotesque mockery, they cherish and treasure the time they had to hold their child, however premature or whatever the deformity. They do not consider it sentimentality, but their only chance to hold and love the baby they hoped and prayed for. And the mothers I have spoken to who chose not to hold their diapered and dressed baby (I don't know anyone who has suffered such a loss who persists in calling it a fetus) have universally expressed regret for not saying goodbye to their child in the way they now wish they would have.

    Of course I would never presume to judge any parent's reaction in such a circumstance, but I don't think that most mothers in that position see dressing and holding their baby as sentimentality, but rather love.

    Shannon

    Edited to add: for the medical professionals, treating a baby who has been born deformed or previable with respect is simply the humane thing to do, not an act of sentimentality.
    Last edit by wannabeL&D73 on Nov 8, '05
  3. by   Q.
    ITA Shannon; great post.
  4. by   Altalorraine
    Quote from wannabeL&D73
    The mothers I know who have actually experienced such a loss do not consider it a sick and grotesque mockery, they cherish and treasure the time they had to hold their child, however premature or whatever the deformity. They do not consider it sentimentality, but their only chance to hold and love the baby they hoped and prayed for. And the mothers I have spoken to who chose not to hold their diapered and dressed baby (I don't know anyone who has suffered such a loss who persists in calling it a fetus) have universally expressed regret for not saying goodbye to their child in the way they now wish they would have.
    Where I work we do a fair number of genetic terminations and some second trimester abortions. It is not at all uncommon for a parent to not want to see the fetus.

    Of course I would never presume to judge any parent's reaction in such a circumstance, but I don't think that most mothers in that position see dressing and holding their baby as sentimentality, but rather love.
    It's not the parents' sentimentality I was referring to. I believe in honoring the life that was not meant to be by treating a nonviable infant with respect, but I also think we're doing it for ourselves.

    Altalorraine
  5. by   wannabeL&D73
    Quote from Altalorraine
    Where I work we do a fair number of genetic terminations and some second trimester abortions. It is not at all uncommon for a parent to not want to see the fetus.



    It's not the parents' sentimentality I was referring to. I believe in honoring the life that was not meant to be by treating a nonviable infant with respect, but I also think we're doing it for ourselves.

    Altalorraine
    Yes, we may be totally doing it for ourselves in some circumstances, but I still don't think that's wrong! We are all human, after all.

    As far as the first point, it seems obvious that a mother choosing termination would be less likely to want to see their baby than a mother in different circumstances. And that is all that I will allow myself to say on that issue as my beautiful, joyful 2-yr. old son has T21 and I am unable to be objective.

    Shannon
  6. by   unc005
    Hi everyone,

    First of all GREAT posts here! VERY good--I bawled my eyes out ALL the while while reading them. <SIGH> The stories/experiences/etc. that A LOT of you wrote about...WOW...!!!... . Also, others REALLY :angryfire me for what transpired with some of these babies (i.e. left in dirty utility room, or what some nurses said to some of y'all about some of the babies y'all cared for---GRRR! <screams!>). I'm not an RN--YET!

    As y'all can (probably) tell by my ID--*I* am a former premie myself: former 30wker, 2#2oz, 10 1/4", Grade III IVH, PHH, 12 neurosurgeries--11 shunt revisions, etc. I could go on and on, but I won't--I'll spare y'all details and so forth. I had ALWAYS wanted to be pre-med actually, but since I struggle SO much with Math, I decided--wellllllllll, I'd better 'wise-up'/get realistic. So...I realized my senior year of H.S. to go for nursing. I ALWAYS knew I wanted to do Level III NICU nursing consideringggggggg...HELLO!... <SIGH> It has ALWAYS, ALWAYS...(did I mention *ALWAYS*? LOL)...held a special place in my heart. I started corresponding with the attending neonatologist who oversaw my care at the second transferring hospital I was sent to (and ultimately had ALL of my neurosurgeries at--that's the ONLY type of surgery I've EVER had) in September '99 via e-mail, and 12/28/99 my Mom and I met him at the NICU at which I'd been transferred to. We stayed 2 hours, and WOW!--WHAT an amazing experience. It was SUCH a proud moment/one of THE best days of my life (NO lie!!). I got a chance to tour the NICU, talk with some of the nurses (I'd been expected :chuckle ), eat lunch with Dr. Kraybill, and ask him questions re: my medical records--which he'd sent me a copy of everything the hospital had had on microfilm.

    Fast forward to 7/13/01 and I got to tour the unit AGAIN--this time with the nurse manager who JUST so happened to be one of my nurses while I was there at the time (I was born 11/23/82, transferred the same day to a hospital about 35 minutes away and spent 5 wks. there, and was then transferred to UNC Hospitals in Chapel Hill, which is a Level III NICU). Again, I spent 2 hours there--I got to spend a little time with her, and then she 'let me loose' with a couple of staff RNs and a couple of NNPs (as that's what I wanted to do/had my heart set on--I'll explain things in just a 'minute'). THAT, too, was an unbelievably amazing experience. September 8, 2001 UNC dedicated their new Women's and Children's Hospitals and they've been in 'operation' ever since. I have yet to visit the new NICU, but I have thought about it often--especially ever since I had e-mailed the NM before the dedication and she had said I was more than welcome to come, she had told the director of the NICU about me, etc. <SIGH> I had told her once I got settled into school and such that I would let her know/would like to see it and she said just to let her know and she'd give me a tour. LOL.

    I felt so...'at home'...both times I visited...it was SUCH an amazing experience. Everyone was GREAT, VERY caring, nice, helpful, etc. Dr. Kraybill had even said that he'd write me a recommendation to nursing school--I never took him up on that offer (I felt it was too 'awkward'--just can't explain it--I admire him VERY much/look up to him--I'd thought about being a neonatologist if I'd gone pre-med). I'd even had a couple of nursing instructors tell me they'd help me any way they could. I just really liked it over there [still do, when I reflect back on my experience(s)].

    However...after going just EIGHT weeks and TWO days shy of FIFTEEN years w/o a shunt revision, I had a brand new VP shunt placed April 20. On May 10, I had the ventricular catheter of my 15 y/o shunt (14 y/o at the time) removed--but EVERYTHING from the neck down left inside. So...now I have a completely FUNCTIONAL shunt, as well as NONFUNCTIONAL shunt (two shunts). They're both on the same side. May 13 I was diagnosed with migraines and THOSE are the result of the surgeries I had at that time. Also, I have sensorineural hearing loss due to ALL of my shunt surgeries--right ear has 85% hearing loss and I also have *some* in my left, but I hear considerably well/well enough. A hearing aid really won't help because I have very poor word recognition (re: the right ear), but the ENT resident I see said it's my decision...he said an amplified sthethoscope is still a great option/option, and I have a Prestige Clear Sound, but I'd REALLY like to have a TRULY amplified stethoscope (i.e. the REALLY nice/expensive ones, because even though this one 'amplifies', you can still hear the rustling/shifting/whatnot of your fingers or whatever may be happening/it doesn't filter out ALL the noise). Yes I know they're quite expensive, but I've been looking for about a year or so on eBay and I know of a couple of models I'm interested in and they sell for about half, sometimes a third or so of their original cost. <SIGH> The one I have says you can hear through ten layers of terry cloth towels, hear through clothing, bandages, etc,. It's 'good for now'. LOL.

    Anyway, I just wanted to (also) say KUDOS to y'all for taking care of/tending to these special gifts from God in their times of need (and also their families). You all are TRULY :angel2: s (thanks). Everyone's stories were...SOOOO 'amazing', heart-wrenching, etc. Even though I have shifted my interest from (Level III) NICU nursing to neuroscience nursing--I hope to work at UNC Hospitals' Neuroscience's Hospital's combined neurology/neurosurgery/ENT floor and ultimately get my MSN and be an Adult NP, I still LOVE/am fascinated by the field/area and my heart is still 'in it'/with it. I still read up on it/have an interest in premies, ethical issues, YOU name it and I have an interest in it--LOL. I can't help it...it's 'in my blood'. <SIGH> It's still a 'tie' between neurological/neurosurgical interests too--particularly hydrocephalus, shunts, ICP monitoring, etc. Oh, lastly, I'm also a diabetic and have been since 8/3/04. So...I have FOUR chronic health conditions...WHEW :uhoh21: :imbar!

    I enjoyed everyone's posts on here and this topic really tore at my 'heart strings' (not TUGGED, but TORE). To those who have lost a child--I'm SO sorry ! <HUGS! to you ALL!> To each and EVERY one of y'all, <HUGS!>. Thanks for letting me tell my story (and post). I hope y'all have a good night!

    Erin

    P.S. A couple of more things I wanted to say: I wasn't supposed to live, my parents were told this, and told to make arrangements. Well...we know what happened;-). Also, to Mike, I found what you said about the lecture you attended VERY interesting/quite fascinating---especially the fact that you attend some of the same courses as (the) medical students--that's VERY neat/'cool'! Thanks...OK, I think that's IT from me...LOL. Again, thanks everyone for letting me post here and sorry for this being SOOOO long:imbar !
  7. by   wannabeL&D73
    Quote from former_premie
    Hi everyone,

    First of all GREAT posts here! VERY good--I bawled my eyes out ALL the while while reading them. <SIGH> The stories/experiences/etc. that A LOT of you wrote about...WOW...!!!... . Also, others REALLY :angryfire me for what transpired with some of these babies (i.e. left in dirty utility room, or what some nurses said to some of y'all about some of the babies y'all cared for---GRRR! <screams!>). I'm not an RN--YET!

    As y'all can (probably) tell by my ID--*I* am a former premie myself: former 30wker, 2#2oz, 10 1/4", Grade III IVH, PHH, 12 neurosurgeries--11 shunt revisions, etc. I could go on and on, but I won't--I'll spare y'all details and so forth. I had ALWAYS wanted to be pre-med actually, but since I struggle SO much with Math, I decided--wellllllllll, I'd better 'wise-up'/get realistic. So...I realized my senior year of H.S. to go for nursing. I ALWAYS knew I wanted to do Level III NICU nursing consideringggggggg...HELLO!... <SIGH> It has ALWAYS, ALWAYS...(did I mention *ALWAYS*? LOL)...held a special place in my heart. I started corresponding with the attending neonatologist who oversaw my care at the second transferring hospital I was sent to (and ultimately had ALL of my neurosurgeries at--that's the ONLY type of surgery I've EVER had) in September '99 via e-mail, and 12/28/99 my Mom and I met him at the NICU at which I'd been transferred to. We stayed 2 hours, and WOW!--WHAT an amazing experience. It was SUCH a proud moment/one of THE best days of my life (NO lie!!). I got a chance to tour the NICU, talk with some of the nurses (I'd been expected :chuckle ), eat lunch with Dr. Kraybill, and ask him questions re: my medical records--which he'd sent me a copy of everything the hospital had had on microfilm.

    Fast forward to 7/13/01 and I got to tour the unit AGAIN--this time with the nurse manager who JUST so happened to be one of my nurses while I was there at the time (I was born 11/23/82, transferred the same day to a hospital about 35 minutes away and spent 5 wks. there, and was then transferred to UNC Hospitals in Chapel Hill, which is a Level III NICU). Again, I spent 2 hours there--I got to spend a little time with her, and then she 'let me loose' with a couple of staff RNs and a couple of NNPs (as that's what I wanted to do/had my heart set on--I'll explain things in just a 'minute'). THAT, too, was an unbelievably amazing experience. September 8, 2001 UNC dedicated their new Women's and Children's Hospitals and they've been in 'operation' ever since. I have yet to visit the new NICU, but I have thought about it often--especially ever since I had e-mailed the NM before the dedication and she had said I was more than welcome to come, she had told the director of the NICU about me, etc. <SIGH> I had told her once I got settled into school and such that I would let her know/would like to see it and she said just to let her know and she'd give me a tour. LOL.

    I felt so...'at home'...both times I visited...it was SUCH an amazing experience. Everyone was GREAT, VERY caring, nice, helpful, etc. Dr. Kraybill had even said that he'd write me a recommendation to nursing school--I never took him up on that offer (I felt it was too 'awkward'--just can't explain it--I admire him VERY much/look up to him--I'd thought about being a neonatologist if I'd gone pre-med). I'd even had a couple of nursing instructors tell me they'd help me any way they could. I just really liked it over there [still do, when I reflect back on my experience(s)].

    However...after going just EIGHT weeks and TWO days shy of FIFTEEN years w/o a shunt revision, I had a brand new VP shunt placed April 20. On May 10, I had the ventricular catheter of my 15 y/o shunt (14 y/o at the time) removed--but EVERYTHING from the neck down left inside. So...now I have a completely FUNCTIONAL shunt, as well as NONFUNCTIONAL shunt (two shunts). They're both on the same side. May 13 I was diagnosed with migraines and THOSE are the result of the surgeries I had at that time. Also, I have sensorineural hearing loss due to ALL of my shunt surgeries--right ear has 85% hearing loss and I also have *some* in my left, but I hear considerably well/well enough. A hearing aid really won't help because I have very poor word recognition (re: the right ear), but the ENT resident I see said it's my decision...he said an amplified sthethoscope is still a great option/option, and I have a Prestige Clear Sound, but I'd REALLY like to have a TRULY amplified stethoscope (i.e. the REALLY nice/expensive ones, because even though this one 'amplifies', you can still hear the rustling/shifting/whatnot of your fingers or whatever may be happening/it doesn't filter out ALL the noise). Yes I know they're quite expensive, but I've been looking for about a year or so on eBay and I know of a couple of models I'm interested in and they sell for about half, sometimes a third or so of their original cost. <SIGH> The one I have says you can hear through ten layers of terry cloth towels, hear through clothing, bandages, etc,. It's 'good for now'. LOL.

    Anyway, I just wanted to (also) say KUDOS to y'all for taking care of/tending to these special gifts from God in their times of need (and also their families). You all are TRULY :angel2: s (thanks). Everyone's stories were...SOOOO 'amazing', heart-wrenching, etc. Even though I have shifted my interest from (Level III) NICU nursing to neuroscience nursing--I hope to work at UNC Hospitals' Neuroscience's Hospital's combined neurology/neurosurgery/ENT floor and ultimately get my MSN and be an Adult NP, I still LOVE/am fascinated by the field/area and my heart is still 'in it'/with it. I still read up on it/have an interest in premies, ethical issues, YOU name it and I have an interest in it--LOL. I can't help it...it's 'in my blood'. <SIGH> It's still a 'tie' between neurological/neurosurgical interests too--particularly hydrocephalus, shunts, ICP monitoring, etc. Oh, lastly, I'm also a diabetic and have been since 8/3/04. So...I have FOUR chronic health conditions...WHEW :uhoh21: :imbar!

    I enjoyed everyone's posts on here and this topic really tore at my 'heart strings' (not TUGGED, but TORE). To those who have lost a child--I'm SO sorry ! <HUGS! to you ALL!> To each and EVERY one of y'all, <HUGS!>. Thanks for letting me tell my story (and post). I hope y'all have a good night!

    Erin

    P.S. A couple of more things I wanted to say: I wasn't supposed to live, my parents were told this, and told to make arrangements. Well...we know what happened;-). Also, to Mike, I found what you said about the lecture you attended VERY interesting/quite fascinating---especially the fact that you attend some of the same courses as (the) medical students--that's VERY neat/'cool'! Thanks...OK, I think that's IT from me...LOL. Again, thanks everyone for letting me post here and sorry for this being SOOOO long:imbar !
    Erin,
    Can I share some of your story on a preemie website? I know it would give parents hope for the future of their children!

    Shannon
  8. by   SmilingBluEyes
    WOW amazing testimony----so appreciative of your sharing it! WAY TO GO----you were OBVIOUSLY "meant to be", Former Preemie.
  9. by   CatLVNRN
    Quote from Altalorraine
    Where I work we do a fair number of genetic terminations and some second trimester abortions. It is not at all uncommon for a parent to not want to see the fetus.


    It's not the parents' sentimentality I was referring to. I believe in honoring the life that was not meant to be by treating a nonviable infant with respect, but I also think we're doing it for ourselves.


    Altalorraine
    First of all, if the parents chose to abort, then there wasn't a hope in their hearts for this child in the first place, and there wasn't an attachment, bonding, already developing to this child. Therefore why would they want to see it, and make their goobyes, so to speak?
    The parents held no honor for the life in the first place, so why would they choose to honor it after choosing to abort it from their lives?
    It's a completely different scenario than parents who hoped and dreamed for this infant, and tragically had their dreams dashed to the ground when the child was stillborn, or born with just hours to live.
  10. by   Q.
    Quote from CatLVNRN
    First of all, if the parents chose to abort, then there wasn't a hope in their hearts for this child in the first place, and there wasn't an attachment, bonding, already developing to this child. Therefore why would they want to see it, and make their goobyes, so to speak?
    The parents held no honor for the life in the first place, so why would they choose to honor it after choosing to abort it from their lives?

    I agree that one choosing an abortion and one going through an unexpected genetic defect or demise are different, however just because a parent chooses abortion does not mean she doesn't honor the life inside of her. That may very well be how she honors it. Not in all cases, granted, and I've seen callous, selfish women who think NOTHING of using abortion as birth control, but some cases of abortion are done, oddly enough, out of love.

    When I was pregnant and was suspected to be carrying multiples (we weren't sure of how many at that point) my husband and I discussed and did not rule out the possibility of selective reduction in the event that I was carrying entirely too many to be safe for me or for them. At a multiples board I visit, I've seen too many quads and more spontaneously abort due to being crushed in utereo by the other fetuses. As loving parents, we would choose abortion because we love all of our children, but would want to spare them what we would consider pain. Certain defects that are incompatible with life we might also abort ~ again out of love. And if we did abort, obviously we would not want to see the remains.

    I am obviously pro-choice and abhor abortion as a method of birth control; it disgusts me. But remember that not all abortions are done out of lack of honor for the life inside.
  11. by   fergus51
    Thanks Q! A friend of mine underwent an "elective" termination when they found out their baby was anecephalic in the second trimester. They loved her and wanted her. I can't imagine anyone saying she didn't "honor" her baby's life. It was a devastating loss for them and they did take the opportunity to hold her and dress her and named her.
  12. by   unc005
    Hi Shannon!,

    You *most* certainly can! I'd be "honored"! I've e-mailed/corresponded with COUNTLESS premie parents/told my 'story' on premie sites (guestbooks), had premie parents e-mail me because of my story because they read it or whatnot, I've joined premie clubs (primarily on Yahoo), etc.--so I've had a lot of experience dealing with premie parents and LOVE it/REALLY enjoy it! It really makes me happy/makes my heart 'feel good' knowing that *I* bring them hope in showing them that there IS hope for their premies and so forth! <SIGH> I especially like talking with/hearing from those whose children went through/have gone through/are going through what I did---the IVH, subgaleal shunt, subsequent necessitation of a placement of a VP shunt, etc. and so forth. I was also diagnosed with CP at two years of age, but thankfully with EI/PT, it resolved itself. However, I have noticed over the last few years that I have muscle spasms, primarily at night, but it may just be 'one of those things'. It doesn't worry me too much though. One thing that's become a problem though is that when I had my spring surgeries and in April when I had my shunt revision--I presented to the ER and of course had to meet with an ER resident and he did an EXTREMELY thorough exam (especially neuro) and I found out that I didn't have any reflexes in my elbows. The same thing reccurred with the May surgery when I presented again in the ER, and had to have the ventricular catheter of my (then 14y/o) non-functional shunt removed as well as a left ICP monitor placed. It also took place when I had a neuro exam re: my migraine diagnosis. Hmmm...oh well...I'm not too worried. It's just 'annoying', more than anything (like A LOT of things <SIGH>). I've also talked with A LOT of former premies too--quite a few who have been through the same experience(s) as I have [i.e. hydrocephalus, shunt(s), etc.]. I LOVE corresponding with ANYONE/EVERYONE 'premie-related'. LOL. The same goes with the hydrocephalus/shunt(s) aspect too. I LOVE being able to help in whatever way I can--even if it just means 'listening'. Sorry this got (a 'little') long. LOL:imbar(bad habit of mine:chuckle). I'm just curious--may I ask what preemie site you're referring to, if you don't mind?

    Thanks SO much SmilingBluEyes!,

    I really appreciate y'all letting me post here/share my story. It makes me feel good being able to do so [and receive such (a) 'warm' response(s)]! And thanks for your very kind words!---that means A LOT! I've been trying to figure out what my purpose in life is (for 'many' years now)--and am still wondering. I mean I know what I've been through, know what an impact/influence it has had on my life, influenced my career decision(s) and so forth, etc. but still...<SIGH>. Also, I know what I want to do IN life and what I want OUT of life...but...still... I just...I dunno..kind of hard to explain I guess/I think. Hmmm...my Mom ALWAYS said (and still does) I was (am) her miracle baby, and I know I am--but I know there are babies who have also endured FAR more than I have. I feel EXTREMELY blessed though!--God knows I do. One thing I worried about (still do) is the getting 'too emotionally involved...'. I know one has ALWAYS heard NOT to do that, but STILL...how can one NOT do that!!????!?!?!??? <SIGH> The nurse manager I mentioned, as well as the nurses/NPs, and even a resident I talked to said that that is NOT something to worry about and it's OK!--one HAS to have SOME emotional 'involvement'. I mean...after allllll...sheesh! Anyway...I'd better stop here...LOL. I know one still has to place a 'little' 'distance' because it can really add even more stress/make things difficult, but one cannot be HEARTLESS or whatnot. OK, I am REALLY going to stop HERE! LOL:chuckle.

    Thanks you two! I hope y'all had a good evening and are having a good day!

    <HUGS! to you BOTH!>

    Sincerely,

    Erin
  13. by   wannabeL&D73
    Quote from fergus51
    Thanks Q! A friend of mine underwent an "elective" termination when they found out their baby was anecephalic in the second trimester. They loved her and wanted her. I can't imagine anyone saying she didn't "honor" her baby's life. It was a devastating loss for them and they did take the opportunity to hold her and dress her and named her.
    I totally agree, in cases where the diagnosis is incompatible with life, and have a close friend who had the same heartbreaking experience with anencephaly.

    Shannon

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