Sunday, July 15, 2007

Loss

Our rounds the other day were accompanied by the sound of weeping. It was nothing complicated. A baby had been born too soon, struggled for a few days, and now was breathing his last, and the family was devastated.

On a somewhat related note, the wife of my nephew recently miscarried at the end of her first trimester. When I heard it, I just threw up my hands. Why, I wondered, does it always seem that the couples who have trouble conceiving are the ones who lose the pregnancy? I can think of hardly anything appropriate to say to them.

After years of seeing various types of pregnancy and newborn loss, I have decided that there are really no good words of comfort at such a time. The loss is so final, so absolute, so irrevocable, that only time can lessen the wound and even then often not completely heal it. We can express our condolences to the family and offer to do anything we can for them, but beyond that we seem relatively powerless. Although it's true that a miscarriage may have occurred because the baby was defective, that's hardly of much comfort and might only bring up a worse feeling. The religious may take comfort in the thought and words that it's God's will, but in the acute stage of death and separation that, too, is of only limited help.

Such scenes of loss are also a reminder to me of how huge a thing it is when a child dies. I frequently write in this blog about decisions regarding resuscitation of very premature babies. We realize what an enormous sadness it can be to save a child who then suffers through life, but we can never forget either the enormity of a death. It, too, affects parents forever.

If I never see again the universal sign of grief of a mother or father stretched out over an incubator, their head laying sideways on it with despair on their face as they grieve their lost newborn, it will be okay with me. But I'm sure I will, and I'm sure I will again feel at such a loss for something right to say. We will offer words and gestures of support, but they will seem simply too small.

248 comments:

  1. Anonymous9:40 PM

    When there is nothing to be said---and of course there IS nothing to ameliorate the grief---if you approach the parents, and say "I"m so sorry" or "I cannot imagine your grief" and then stay awhile, it is enough.

    It is also a hard thing to do---to participate silently in someone else's grief. You want to slip away when there is dead air time, when there is nothing to be said.

    It makes me squirm, to stay by the bedside for a while. I want to run away from such poignant and miserable feelings. But I stay for a while, just to be-with.

    I don't know if it really helps anything. I just want the mom/dad to know they aren't alone . . .
    Chris and Vic

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  2. Poignant post....very true. Thank you for your kind words.

    It is such a difficult time in life...death in any manner, but death of a child is just beyond comprehendable (I don't know if that's even the right word...or a word at that).

    Thank you for sharing.

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  3. Sometimes just being there is enough. I will never forget the kindness of the two nurses who stood by Olivia and by us as she passed away. There was little that they could do but treat her (and us) humanely, gently, and with dignity and the respect that every human being deserves. Not a day passes when I don't think about the night over a year ago when we lost our little girl, and not a day passes when I don't think about how much the dignified care she received those last hours mattered.

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  4. Anonymous12:46 AM

    Nice to hear how the grief touches you. The neonatologist who cared for my son when he dies told me "you can have another baby." I felt like just another person... with just another dead baby. I wish you had been my son's physician. You patients are blessed.

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  5. Anonymous5:10 AM

    As I sat beside my 27 weeker (who was doing well), I watched a Doctor go up to the isolette of a 24 weeker who was doomed to die. She stood beside it for a moment then her head dropped to rest sadly on the plastic. I realised then that loss affects the doctors too. She was no doubt despairing at the sadness of such fate.

    Later, a friend of mine's 25 weeker died. When the doctor went in after the baby had died, instead of first doing clinical things, the doctor (same one as above) gave the little boy a cuddle as first priority rather than just pronouncing him dead.

    Those things really touched me.
    Thank-you

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  6. Anonymous8:36 AM

    When my preemie son died shortly after birth I was a complete mess. I went in to the hospital with *some* pain and then had to confront the death of my first born. My husband and I held him while he passed but the enoromity of the situation and the shock prevented me from really seeing/feeling my son. I was given drugs shortly after he passed and when I woke in the middle of the night I asked the nurse if I could see my son. She reminded me that he had passed and I told her I knew that but I wanted to see him to say goodbye. The nurse got him from the morgue and swaddled him like any other baby. She handed him to me and my husband in the still of the night so we could say our goodbyes. We studied him, talked to him and told him we loved him. It was the best moment for us- devastatingly sad but comforting at the same time. To this day, we are beyond grateful to the nurse who gave us our son back so we could say goodbye.

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  7. Anonymous10:10 AM

    You're right that there are no words of comfort you can offer a parent who has just lost a child. Comfort is about making it better -- and there is no way to do that. But don't imagine that offering compassion isn't enough. Through my five miscarriages, I was hugely grateful for the medical staff who took the trouble to say how sorry they were for our loss; for the doctor who gave me a wordless hug; for the nurse who held my hand with tears in her eyes. Their emotion made me feel they understood mine, and only enhanced my respect for their professionalism. Compassion is a huge gift to the bereaved, and we don't forget it.

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  8. Anonymous2:32 PM

    You're right, the loss is forever. And after the six week visit to the OB or perinatologist that oversaw the mom's pg is done, there will be no medical professional to even ask how the parents are doing. Unless she get pregnant again.

    There is no medical treatment for grief, nor should there be. Yet weeks of living in life and death drama, followed by the death of one's child leaves its mark. As a parent of one of these babies who ultimately didn't make it, its less what you say at the time, (I don't remember anything the neo said to us when our daughter died) and more whether or not you or anyone else is following up that is important. It is much better to have a bereaved parent to cancel a follow up appointment if it is not needed than to vaguely ask him or her to schedule it. SE

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  9. Anonymous4:38 PM

    Hello Neonotal Doc,

    I've come across your blog recently, and I must say I like your blog. Your posts are very humane, and I like reading a lot about the dynamic of your career as a Neonatalist.

    And I hope the couple who lost their baby will be healed and find comfort, and as stated in previous comment, they're not alone.. and hopefully will be blessed with another baby, soon.

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  10. I received a lot of comments I didn't like after losing a baby during pregnancy (At least you can get pregnant! Don't worry, you'll have another!) but by far the most hurtful situations were those where someone knew about the loss yet never mentioned it. Lots of people claim "giving people space" is best, but I think it is really just easier on the nonbereaved, who is the one who gains from avoiding an uncomfortable situation.

    Saying you are sorry is actually bigger than you think. I think the majority of people who lose a pregnancy appreciate it.

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  11. We came so close to losing our son in the first month of the NICU, and had a couple of scares even when the days of ventilation were behind us. We were shown so much compassion by the NICU staff, it made what we were going through a little easier. On bad days, the nurse who had cared for Edwin during that hard time would call on her time off, from her home, to check on him. Some nurses couldn't sleep at night just thinking about him, and hoping he was okay.
    I saw that many nurses and neonatologists had a special place in their hearts for Serena and Edwin, and I saw their kindness with all the babies they treated.
    Even now, six months after their discharge, we hear that someone asks about them almost daily.
    I know that they show so much compassion to those who lose a baby in the NICU because I saw the tears in the pod.
    It touches me to know that many neonatologists and nurses feel compassion for people's babies.
    I once read a comment from someone who seems pretty against resuscitation of 23 weekers. When referring to them she said they are 'damaged fetuses whom nature intended to be miscarried.' Those words still sting today.
    Thank you ND and all neonatologists for realizing that these small beings are our children, and our love for them is as strong as it would be had they been full term.
    I came so close to losing my baby, my heart aches so deeply for parents who do. I can imagine that showing you care, and that you recognize their child's life had value and the loss is painful and real, makes a difference.

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  12. Anonymous10:34 PM

    My son is now 5 and I still remember my constant fear of death. I will never understand why some babies become miracle stories and others don't leave the NICU.

    Doesn't every parent just want his baby to live? In the moments and days right after birth, with lifesaving means available for use and survival odds above the single digits, are there really parents who are seriously contemplating and debating the details of the quality of life studies from preemies born in the 1970s to decide whether or not to try to save their baby?

    There is something inherently right in saving babies, as many of them and as often as is possible, and as early as technology will allow. There is no silver lining in the cloud of Loss that ND describes, and I think it is the most difficult part of life to accept.

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  13. Anonymous8:40 AM

    Anonymous, if you simplify things to the point of over-simplification, then yes, there IS something inherently right in saving babies.

    AND, there ARE fates worse than death . . .

    Chris and Vic

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  14. Anonymous10:13 AM

    When I lost my little one, the perinatologist who treated me was my biggest source of comfort. He especially made sure to explain to me that it was not my fault. He hugged me and my husband and followed up on us afterwards.

    At the time, I didn't realize how strongly I would cling to his words. In addition to coping with the death of my baby, I had to face a daily barrage of insults and accusations from most members of my family who did blame me and went out of their way to make sure I knew it.

    We had to turn off the phone because I received daily calls like, "Well, you MUST have done something to cause this..." and "Are you sure you didn't forget a prenatal vitamin one day?" or "I heard somewhere that drinking lemonade will dissolve a baby's organs, you remember that one time you had a glass of lemonade don't you?" and my all time favorite "Well, you must not have loved your baby enough or God would not have taken her away."

    In the weeks that followed, I had sunk into a very deep depression and contemplated suicide on a daily basis. The perinatologist may have thought that he wasn't helping me by offering seemingly small gestures of compassion but I think he may have saved my life.

    Julie

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  15. I am impressed with this post. I agree, a physicians words to a parent vulnerable with loss stays with a person, can shape a grieving experience. And the loss of a baby also stays with a person. My 80 year old father passed away recently. Being of that "greatest generation" he never spoke to us about his first daughter who died at three days. At the gathering for Dad after he passed his secretary and I had a conversation. Apparently Dad had recently talked with her about this little girl, how he missed her and was looking forward to seeing her again in heaven. A learning moment for me.

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  16. Neonatal Doc

    While my specialty is Internal Medicine, I have also done postgraduate training in grief, loss and bereavement with a special interest in hospice and end-of-life care. In addition, I am a former NICU parent.

    Thankfully, we did not have to face the decisions with end-of-life care with our daughter. Since this experience I have explored grief and bereavement in the NICU from the dual perspective of a NICU parent and a grief and bereavement educator.

    I recently posted a blog on What can I *say* when a NICU baby dies? for friends and family with a reminder that "words can provide a source of solace, hope, comfort and reassurance--emotions much needed during the grieving process."

    I have included the link in case others find the information helpful.

    Kirsti A. Dyer MD, MS, FT
    NICU Parent Support http://www.nicuparentsupport.org
    Journey of Hearts http://www.journeyofhearts.org

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  17. a touching post, thanks for sharing

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  18. Anonymous12:24 AM

    I wrote my July 12 post at spindyeknit.com as a mom who lost my child--in my case, a miscarriage at 4 months--telling how it made it so I could be a comfort much later to another woman who'd gone through that at five months.

    Back in the dark ages of 26 years ago, they didn't even let us see our baby's body on the belief that we would heal faster if we didn't.

    What I wrote about is the one good thing that gradually does come: an inner strength that grows from acting on the certainty that no other parent should ever again have to go through this alone. My husband and I were deserted completely by our friends--Wabi totally describes that one right. To us, because of that, it feels imperative to be there for others going through the loss of a child.

    And I am so grateful for the empathy of those medical personnel who are willing to be there, too.

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  19. ND, saying 'I'm sorry' and just being there means a lot. More than it seems at the time, i think. I will forever remember the compassionate care we had when my son died, and the doctors and nurses who were kind & gentle with us. Saying 'Thank you' to them also seems so little to say, when our gratitude runs so deep.

    So, thank you for all you do, and for your compassion.

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  20. Appropriate timing to read this - my friend's 1 year old 30-weeker just passed this morning. He had a grade III IVH at birth, never got off the vent, and had a shunt placed, but seemed on the road to healing (as much as he could.) He went into the hospital last Monday for abdominal swelling, and on Friday, they located the problem. They biopsied his liver and found he had a congenital liver disease that was killing him. They had fought for a year against all of the other medical problems, they never saw this one coming. It went undetected all this time and they only had a day to say goodbye. I am myself grieving right now - how can I be of any comfort to them? I have no words that will make anything that has happened to them over the last year any better. I am only in service mode now, doing whatever need I see arise.

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  21. Anonymous5:26 PM

    Grizzle, you are right to be practical, I think--they must eat and do logistical things which you might be able to help with, such as phone calls, grocery shopping, "arrangements". It is called just putting one foot in front of the other. That is all you can do when you are blown away by grief, I think. Just take a deep breath and do one small task at a time, one after another . . .
    Chris and Vic

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  22. Thanks, everyone. I guess I shouldn't underestimate the value of simply saying "I'm sorry."

    Julie, I'm amazed at some of the things family members said. How can people be so insensitive?

    Comfortdoc, thanks for the words and links.

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  23. Anonymous10:42 PM

    I'm not a very vocal person to begin with, so I would be one of those who wouldn't say anything. That doesn't mean I feel any different than anyone else. It just means that words don't seem appropriate.

    I like what chris and vic said at the top:

    "When there is nothing to be said---and of course there IS nothing to ameliorate the grief---if you approach the parents, and say "I'm so sorry" or "I cannot imagine your grief" and then stay awhile, it is enough."

    Sounds like good advice.

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  24. ND,
    Just wondering how many families you have come across who have gone on to have more children after having a preemie?

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  25. Anonymous9:39 AM

    Anonymous said: "Doesn't every parent just want his baby to live? In the moments and days right after birth, with lifesaving means available for use and survival odds above the single digits, are there really parents who are seriously contemplating and debating the details of the quality of life studies from preemies born in the 1970s to decide whether or not to try to save their baby?"

    No, there are not parents debating the quality of life studies from the 70's to decided on resuscitation today - where did you get this information from? There certainly ARE discussions going on among parents and professionals about quality of life among severely preterm and neurologically compromised preemies, but in an overall context of a number of studies throughout the decades.

    You asked: "Doesn't every parent just want his baby to live?" Not if that life is going to be filled with a lifetime of suffering. That would be very selfish and cruel, don't you think? My best friend had a preemie who had a grade IV IVH and massive, severe disabilities and on-going pain - shunt problems, replacements, severe CP/ w/c - could not even hold a toy in either of her hands, could not sit, speak or see. She was profoundly mentally retarded. When she finally passed away after 12 years of repeated hospitalizations and surgeries ALL due to her preterm birth and complications thereof, the first thing my friend said to me was "it took 12 years to undo what neonatal did to her." This courageous mother contacted the ethics committee of her daughter's latest hospital, and asked that everything be stopped so she could take her daughter home to die in peace. Two hours later, an ambulance transported her daughter back home, and two weeks later, this little gal was finally allowed to leave this earth. This mother does not grieve for her daughter's death, but has often remarked that all of her grief was used up during her daughter's life because the pain for all of the family was so great. Now she is perfectly comfortable with her daughter being at peace and most of all, no longer in pain.

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  26. Anonymous3:01 PM

    not again..........

    why do so many conversations have to turn into "better off dead than severely compromised?"

    I am so sick of people trying to comfort me for the loss of my preemie by saying it is better that she is dead that severely disabled. Even if it is true it is not REMOTELY comforting. My heart has ached every single day for years for the loss of my child. Finally we had ONE post topic simply acknowledged how hard it is to say goodbye forever, and still it denigrates into this discussion that has taken place so many times before. Anon is right, there is NO silver lining when your child dies. Whether or not the child would have been have a poor quality of life had she lived is not a silver lining. It just simply sucks. Period. I am so tired of people acting like the road my husband and I were forced to go down was "easier". None of these people suggesting it have held their dead newborn. I would never suggest that Terri/ 2 had the easier road because she got to keep hers, and I would like the same courtesy in return.

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  27. Anonymous9:10 AM

    Anonymous said: "I am so tired of people acting like the road my husband and I were forced to go down was "easier". None of these people suggesting it have held their dead newborn."

    No, I've not held my "dead newborn" but I did hold my "dying newborn", only she managed to survive her massive IVH and cardiac decelerations and live, despite a DNR. Even her funeral was being planned.

    No one is suggesting that losing a newborn is somehow acceptable and understandable and certainly not easy. It isn't. However, this thread is about loss, and loss of a preemie years later after massive amounts of painful medical interventions is not seen by neonatal professionals, and whether you're able to accept that or not, it IS worse.

    Neonatologists and others see what is happening in their units and to themselves, and not what is happening in pediatric ICU's or in the homes of these children who die years later from complications. This was the point I was making.

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  28. Anonymous9:42 AM

    Terri w/2 wrote: No, I've not held my "dead newborn" but I did hold my "dying newborn", only she managed to survive her massive IVH and cardiac decelerations and live, despite a DNR. Even her funeral was being planned.


    If your child survived, not because of additional aggressive interventions, but simply because she refused to die - How is this the Neo's Fault? And your tone towards anonymous 3:01 IS rather holier than thou and offensive. You HAVE NOT walked her path, you DO NOT know her pain. You know your own, which is understandably great. You know the envy you feel when you look at those that, in your mind, were spared the life you lead. But you do have to understand. They do not feel spared. They feel broken, and incomplete, and there is no peace to be had their lives, either.

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  29. Thank you for your eloquent words as usual. This is something many people cannot understand, and don't know what to say to a grieving family. Thank you for your hard work and care & concern, all of you caretakers...thank you.

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  30. Anonymous1:28 PM

    I have to comment. I normally stay out of things, but with the comments turning into a "my dying child scenario was worse than your dying child scenario" I can't stay on the sidelines muffling my astonishment any longer. In good conscious how can ANYBODY say that one dying child is WORSE than another? The pain is the same, the pain is real, that child is no longer here on earth. We each have our cross to carry and to say that anypone person has it worse off when in the end it is a "dead child" is just mystifying.

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  31. Neonatal Doc,
    you're right those simple I am sorry comments mean so much more than you can imagine. I will never forget the nurse who came to me held my hand, went to say something and couldn't, she shook her head squeezed my hand and then left. Even those simple gestures mean so much to those of us who lose a neonate. Because there are no "right" words..

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  32. The death of ANY child is the same. The what ifs of later on in life do not mean a thing to a parent that has just lost a child.

    People still seem to have issues with preemies that survive that do not have a "good" quality of life. The docs say my son has a poor quality of life, but that is their opinion. They don't live with him and see how much joy he brings to everyone around him.

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  33. When we were faced at 25 weeks with an IUGR baby weighing under 500 grams, we were sent off for a neo consult.

    I do not remember this man's name other than by his blog nickname I gave him, but I thank the Lord for him.

    He was so kind and caring. He discussed the hard and difficult things which NEEDED to be discussed with us. He did not mince words. He did not dance around the hard issues. He did this in a way that we in our grief and anger induced haze understood. He was not condesending. He asked us if we had named her, and when we told him her name, he called her by her name the rest of the interview, rather than the term "the fetus" which the peri consult that morning kept using, over our corrections of "her name is Sydney".

    We went from a very confrontation consult with a peri that am to this caring and compassionate neo in the afternoon. We walked out of the room actually understanding what was going on and why things were being recommended, not feeling like things were hopeless and people just wanted us to abort.

    He was human and present with us. He kept his professionalism, but allowed us to grieve and cry in his presence without conveying we were wrong for doing so.

    I had a client of mine die last week. I thought of your blog as I drove to her death bed to be with her family. I sat and talked with her father about sweetner substitutes and flavored water for half an hour, with the clear sould of chekne stokes breathing filling the air. That was what he needed right then, and I am glad I could help. It was an honor to be allowed to be with them at such a time, and I treated it as such. I shared in their grief, and allowed them to see I was (am) grieving as well.

    It has been years since a client I really cared for died, and I had forgotten what a loop that sends a professional through.

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  34. Anonymous8:36 AM

    Doc where are you?

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  35. Anonymous12:34 AM

    I wonder why, if these innocent little babies are breathing their last breaths, parents are draping themselves over the hard plastic of an incubator instead of cradling their dying infant in their arms...I'm not trying to sound silly or insensitive, I'm simply wondering. If NeoDoc says that it is so common he would prefer to never have to see it again, why are these parents not being encouraged to hold their little ones for every last second possible? Does this action symbolize how we as a society have learned to look to others to tell us "what the right thing to do" is? Or maybe it is simply a component in the culture of a NICU environment...

    I'm truly interested in this as I am concurrently in school to become an SLP, specializing in premature infant feeding/swallowing disorders and training to become an IBCLC.

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  36. Did you go on vacation?

    I hope all is well.

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  37. Anonymous1:16 AM

    Grief is so normal, and I think letting parents know their pain is part of a process that is normal, and letting them know it's okay to really grieve helps. I decided, after my 17 week D&E for fetal demise that I would grieve my way. I learned that grief is a gift. Many family members encouraged me to "get over it." Well, I decided to ignore that, treat my reactions as part of the way I loved my baby...and part of the validation of my baby's life. I think I am much stronger now for honoring my baby's life by grieving my baby's death. We are not meant to have dead babies, and it's a natural reaction to mourn the seperation death brings. I will always let anyone who is in grief for any loss know that their reaction is normal, they can take the time to grieve, and when the time is right, they will begin to live outside of mourning. When did it become so wrong to allow people to miss the dead and really let it go. Validation goes a long way to helping someone heal. My OB did a good job in that she acknowledged my feelings and that this miscarriage was also my child no matter what. I did get angry when she offered me drugs to deal with a second miscarriage that followed right after (but I didn't tell her that). However, she still acknowledged my right to be sad. That helped so much.

    Dawn

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  38. Anonymous2:33 PM

    It has been a month since your last post and you are missed! Perhaps you have been fortunate to take a much-deserved vacation.

    Some of the posts on this thread were harsh, but I do hope you know such is not aimed at you. It is apparent that many who post here have experienced awesome anguish, and sometimes that is expressed in a startling manner. Grief, anger, love - they are separated by infintesimal distances.

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  39. To 12:34 Anonymous- I doubt Neonatal Doc meant that the parent's were leaning over the incubator as their baby died. As a NICU nurse I have seen many babies die, and if the parents are present (unfortunately in unexpected deaths they sometimes are not) they hold their baby as he passes. We do not make them watch from above the incubator, they get to spend the last minutes of their baby's life holding him in privacy. I just did this two nights ago with a family, and like neonatal doc says, if it never happens again it won't be too soon. Good luck to you in the NICU!
    To Neonatal Doc- please come back soon, I miss your posts!

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  40. I hope you are enjoying your break from blogging. Will you be starting again soon or have you decided to stop blogging?

    Wishing you all the best.

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  41. Hi Doc,
    My friend had her baby at 24 weeks in early May, and she is still in the NICU. She lives at the Ronald McDonald house far from home. I think about her every time I read your honest and thoughtful blog.

    I have added you to my page as well. I hope that's ok. :)

    -Hanna

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  42. Anonymous10:00 PM

    Hope you return soon.

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  43. Anonymous4:11 AM

    Gee, I hate to sound crabby here, but PLEASE post or take the site down. The suspense is killing me!

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  44. Please, start blogging again. You are missed.

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  45. Anonymous7:06 PM

    Can you please tell me if it is true, I have read on another site that Neonatal Doc will no longer blog? I realise this may not be the appropriate place to leave this post. Apologies

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  46. Anonymous9:20 PM

    Hi guys, visit http://nursereview.org/, very useful source for nurses.
    And also anyone who wants to link exchange, just email me: filipinonurse@gmail.com

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  47. Hey, where is the Doc?
    Come back. Please?

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  48. hi......... i really d way u have expressed urself on this matter..... i am a college student n have 2 do a presentation on neonatal technology. i am actually a design student so dont have any medical background...... would be thankful for any advice..... my email id is navu28@gmail.com.....

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  49. Hi ND, Please come back! I really miss your posts. You are the best blogger around.

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  50. Thank you for such an honest post. My heartfelt thoughts are with those who have lost children.

    My son and daughter were in the NICU (I had cord prolapse) and I can't imagine such a loss. The words just aren't there and I know nothing I can say won't make anything better.

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  51. Anonymous8:26 AM

    My heart is heavy after reading this heart touching post and comments...

    My deep condolence to all who had gone through this grief...

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  52. Anonymous8:56 PM

    Miss you Neonatal Doc

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  53. Please don't tell me I've found an awesome blog that is now defunct?

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  54. Anonymous8:08 PM

    Please come BACK.

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  55. I hope you're okay.. Wherever you are Doc.

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  56. Just wanted to say that I miss reading your posts. I hope all is well with you.

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  57. As if your post wasn't touching and moving enough, these comments have me weeping.

    I am new to your blog, but am becoming a permanent reader. Thanks for your insightful and thought-provoking words.

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  58. This post hit at home with me personally because of my own losses but also for all we hear every day doing what we do as an organization. This was so well written I only wish we could use it in an up comming newsletter our charity offers http://Heavenlyangelsinneed.com
    Thank you for this post. It was very heartfelt and sadly very true.

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  59. Someone on my blog suggested that you and Dr. Crippen had run off together to Mexico. If so, I wish you both well.

    I hope you are well and just got sick of blogging. I could understand that.

    I'd prefer not to think that you are sick, dead or locked away for going on a spree shooting.

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  60. Anonymous12:16 AM

    Found your blog by accident, and I had to read. Unfortunately, I shouldn't have read this, as it made me think of the daughter I lost six months ago.

    I actually just finished writing my perinatalogist a 'thank you' note for all the kindness he gave my husband and I during our last two sucky pregnancies. The first ended in a missed miscarriage at 12 weeks. After one cycle post-miscarriage, I conceived again only to have a diagnosis of anencephaly at 15 weeks. For reasons too numerous to name, we elected to terminate. I regret and am thankful for that decision every day. Mostly, though, I just wish I could have seen her face. Isn't that strange?

    My husband and I are fortunate to have a healthy kiddo, but the losses hurt so very much. Probably moreso since they represented the only two natural pregnancies that I've had (our toddler was conceived via fertility drugs).

    There is nothing you can say to ease any patient's mind. I went through a period where I blamed my doctor (the peri) for what he didn't do. It sucked, because that man gave me everything he had. He was so tremendously kind. There was no one else that I would have wanted in those terrible ultrasounds with me. But, still, the blame. You just wish you could make it go away, you wish someone can fix it. And they can't. And you can't. And that sucks.

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    Please come back. I- along with everyone else- miss you. You were my first med blog and I'm totally addicted now!

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  62. Anonymous1:51 AM

    One mom on saving babies lost a baby girl to premature birth. They were blessed with another baby girl born even more premature then the last baby girl they had that died. There new baby lived. Her goal was to gain weight to go home. And gain weight she did and went home healthy. May that little miracle girl continue to be blessed by God and her Guardian Angel Sister! Those that are given the will to live are strong miracles from God who teach us about the gift of life we are given and the meaning of love. Those that don't live are Angels chosen by God to watch over more babies and chosen to be at peace.
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  63. Anonymous6:44 PM

    Although it seems you are no longer blogging, I wanted to thank you for your perspective, and confirm what others have said. All you do for these children and for their parents is most certainly appreciated.

    If you do in fact read this from time to time, thank you from the bottom of our hearts.

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  64. Anonymous10:00 AM

    Hey Neonatal Doc,
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    Well, God bless you and heal you. You know the rest, and I mean it. I don't have anything profound to say, just praying you're okay.

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  67. I was in tears by the middle of your post. I am a parent of a miracle, born at 27.5 weeks, SGA at 1 pound 6.9 oz. I was in the NICU with my child night and day only leaving for showers, food, pumping and a little sleep. To this day I can remember the little ones who did not make it and it killed me! You are a wonderful person!

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  68. This post is touching and poignant -- made me reflect on how grateful I am that I had a healthy daughter. Thanks

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  69. I'd like to feature you on Wellsphere as a medical expert blogger -- would you drop me an email?
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  70. I agree...the loss of a child (no matter what child or what circumstance) is exceptionally devastating. You are not only losing a life, you are losing that life's potential. I know that I felt grief down to my very core when my InVitro attempt failed (early miscarriage or "chemical pregnancy" as they termed - that's a bad term...make's it sound un-real). Anyway, I felt so much grief because after the "positive" pregnancy test, that gave me hope. Hope that there was a new life I would get to be a part of, in my mind I already had envisioned my child at home, going to school, learning things, etc... But no, it was taken away very quickly, and even though it wansn't an actual baby yet (I do realize this) the potential for a baby was there...and I grieved the loss. So I do understand the posts and feel uncomfortable that some people are trying to say that some situations are more intense or more grief-ridden than others...a child lost is a child lost and lost with that is all the potential for another wonderful promising human life. So please be kind with each other's hearts...Shauna

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  71. Anonymous1:34 AM

    That was a very moving post, it brought back so many images. I can still see the face of the mother beside me in the NICU when a doctor told her "baby's not going to make it." "Baby"'s name was printed in large black font on a sign taped to the incubator. Surely the doctor could have read it? The next doctor did, and showed more compassion. He was more experienced, his voice more calming, his words more heartfelt. It did make a difference- I could see it in her face.

    I think about that woman all the time because we shared the same story with opposite outcomes. Both medevaced from remote Pacific islands to the nearest NICU, both pregnant with g/g twins, she watched me leave with my girls two weeks after their birth while she waited and prayed for months, only to leave alone. There's so much injustice in every infant's death, and there are no words that can set it right, but compassion still goes a long way.

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  72. I think your blog is great, and I would like to feature you on the new
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  74. Anonymous12:05 AM

    sometimes there is just nothing you can say. But trying shows you are compassionate. sad but good post.

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  75. Anonymous6:47 PM

    as being of a parent who all most lost my son premature and he was born with esophageal atresia and other complications we were lucky to have great doctors and a very caring surgeon who lucian thinks the world of. He has always made sure he stays around until we are comfortable. I love our surgeon, but being one of thoughs people laying your head on the side of the bed and ventilator wondering day to day weather were gonna have our baby come home.

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  76. Anonymous1:17 PM

    A big problem I used to see when I worked ER was that the mother frequently blamed herself for a miscarriage. I used to spend a lot on time educating them so that they would not go on thinking that--I hated to think of them damning themselves for something that was nature's decision-making.

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  77. I found your blog via another blog called The Playpen, written by the father of a preemie. I know this post on Loss is over a year old, and you haven't updated your blog in that time. But I'd love to republish it on Blog Nosh Magazine (www.blognosh.com). I'm the head editor of the Pregnancy, Birth & Adoption channel, and I think this would be a terrific addition to the pieces that already exist there. If you're interested, please email me at missivesfromsuburbia.blogspot.com. Thank you!

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  78. I love your blog! I am doing my basic classes now and then going to Nursing school. I have always wanted to work in the NICU and you seem like the kind of doctor that I would like to work under. I am following your blog now. :)

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  80. Doc, I've read your post on grief numerous times and it always makes me cry - primarily because you are so in tune with the feelings that I, as a parent who held their child as they passed in the NICU, and also the staff, whom I observed also struggling with their own grief, *managed*. I do hope that you will post again - you have touched the hearts of many people.

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    Coping is difficult but coping alone is a lot more difficult.. The worst was when I was asked if I indeed was pregnant and having to cope with the loss the second time... by the man who is supposed to be a father twice and the man I love...

    Wish in time, all my feelings will be in past tense...

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