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I am having a really hard time right now. I cant eat or sleep. I dont know what I am going to do or how to cope with my loss. I was a mother for one day and watched my son die in the NICU and couldnt do anything, what happens next, how am I suppose to live what am I going to do now?!
Samantha
Cancer Behavioral therapy Pregnancy Suicide Pain Bereavement Bone cancer Palliative care Depression Post-traumatic stress disorder Sarcoma Stress
I am so sorry for your loss. I have been there and know it's difficult to find words that make a difference in how you will feel. "What are you supposed to do"?? Just keep breathing, each day. Surround yourself with your loving friends and family who will support you in your loss and with time...much..much time...you will feel better. I know it's impossible to think the pain will ever go away or even lessen. Mine did, thank God, because I could not have lived in so much pain. There is nothing like it and no one will understand how you feel. I took my pain and channeled it into other things such as painting etc. I will never forget my angel, but I have moved on and I know she will always be watching and giving me a boost in this life. I wish you the best on your journey through the grief. Hold on and please stay in touch with us.
Melissa
I am so very sorry for your loss. I wish I had the words that could ease your pain. I'll pray for peace to come to you and help you through this difficult time
Am so sorry for your loss. May God strengthen you and give you the grace to move on.
I too lost my twin girls 1 day old and the other 7 days later. I thought i was never going to recover. But it did get better(by the grace of God). Though not completely healed every day is better.
You are in my prayers.
I am incrediblys orry for your loss, your pain, your grief. I too expereinced a great loss 8 months ago. The only thing that is helping me is time.....I remember my Zoe with a picture and a footprint. I talk to her everyday and tell her some day we will be together, in another time and place. For some reason thinking of her every day and letting her know I think of her comforts me becuase I belive she is living in spirit, in another form of energy that surrounds me and my family.
I am so sorry for your loss. I lost 2 babies, its been exactly a year since my second baby died. He had IUGR related issues and his lungs failed a few hours after he was born. My first baby died of similar complications.
It was tough but I think I've coped well. Yoga, aerobics, some painting, it helped. Of course having my husband and family around helped tremendously. You will be ok, I know its tough to stay positive but time does heal your wounds. The pain is less raw for me now and I'm sure it will be that way for you too.
I honestly don't know where to start. Perhaps this can provide some information. It was in the New York Times yesterday:
September 29, 2009
After a Death, the Pain That Doesn’t Go Away
By FRAN SCHUMER
Each of the 2.5 million annual deaths in the United States directly affects four other people, on average. For most of these people, the suffering is finite — painful and lasting, of course, but not so disabling that 2 or 20 years later the person can barely get out of bed in the morning.
For some people, however — an estimated 15 percent of the bereaved population, or more than a million people a year — grieving becomes what Dr. M. Katherine Shear, a professor of psychiatry at Columbia, calls “a loop of suffering.” And these people, Dr. Shear added, can barely function. “It takes a person away from humanity,” she said of their suffering, “and has no redemptive value.”
This extreme form of grieving, called complicated grief or prolonged grief disorder, has attracted so much attention in recent years that it is one of only a handful of disorders under consideration for being added to the DSM-V, the American Psychiatric Association’s handbook for diagnosing mental disorders, due out in 2012.
Some experts argue that complicated grief should not be considered a separate condition, merely an aspect of existing disorders, like depression or post-traumatic stress. But others say the evidence is convincing.
“Of all the disorders I’ve heard proposed, they have better data for this than almost any of the other possible topics,” said Dr. Michael B. First, a professor of clinical psychiatry at Columbia and an editor of the current manual, DSM-IV. “It would be crazy of them not to take it seriously.”
There is no formal definition of complicated grief, but researchers describe it as an acute form persisting more than six months, at least six months after a death. Its chief symptom is a yearning for the loved one so intense that it strips a person of other desires. Life has no meaning; joy is out of bounds. Other symptoms include intrusive thoughts about death; uncontrollable bouts of sadness, guilt and other negative emotions; and a preoccupation with, or avoidance of, anything associated with the loss. Complicated grief has been linked to higher incidences of drinking, cancer and suicide attempts.
“Simply put,” Dr. Shear said, “complicated grief can wreck a person’s life.”
In 2004, Stephanie Muldberg of Short Hills, N.J., lost her son Eric, 13, to Ewing’s sarcoma, a bone cancer. Four years after Eric’s death, Ms. Muldberg, now 48, walked around like a zombie. “I felt guilty all the time, guilty about living,” she said. “I couldn’t walk into the deli because Eric couldn’t go there any longer. I couldn’t play golf because Eric couldn’t play golf. My life was a mess.
“And I couldn’t talk to my friends about it, because after a while they didn’t want to hear about it. ‘Stephanie, you need to get your life back,’ they’d say. But how could I? On birthdays, I’d shut the door and take the phone off the hook. Eric couldn’t have any more birthdays; why should I?”
Hours of therapy and support groups later, Ms. Muldberg was referred to a clinical trial at Columbia. After 16 weeks of a treatment developed by Dr. Shear, she was able to resume a more normal life. She learned to play bridge, went on a family vacation and read a book about something other than dying.
A crucial phase of the treatment, borrowed from the cognitive behavioral therapy used to treat victims of post-traumatic stress disorder, requires the patient to recall the death in detail while the therapist records the session. The patient must replay the tape at home, daily. The goal is to show that grief, like the tape, can be picked up or put away.
“I’d never been able to do that before, to put it away,” Ms. Muldberg said. “I was afraid I’d lose the memories, lose Eric.”
For some, the recounting is the hardest part of recovering. “That was just brutal and I had to relive it,” said Virginia Eskridge, 66, who began treatment 20 years after the death of her husband, Fred Adelman, a college professor in Pittsburgh. “I nearly dropped out, but I knew this was my last hope of getting any kind of functional life back.”
At the same time patients learn to handle their grief, they are encouraged to set new goals. For Ms. Eskridge, a retired law school librarian, that meant returning to the campus where her husband had taught.
“Everywhere I went there were reminders of him, because we had been everywhere,” she said. “It was like I was getting stabbed in the heart every time I went somewhere.”
That feeling finally went away, and Ms. Eskridge was even able to visit her husband’s old office. “It really gave me my life back,” she said of the treatment. “It sounds extreme, but it’s true.”
In a 2005 study in The Journal of the American Medical Association, Dr. Shear presented evidence that the treatment was twice as effective as the traditional interpersonal therapy used to treat depression or bereavement, and that it worked faster. The study supported earlier suggestions that complicated grief might actually be different not only from normal grief but also from other disorders like post-traumatic stress and major depression.
Then, in 2008, NeuroImage published a study of the brain activity of people with complicated grief. Using functional magnetic resonance imaging, Mary-Frances O’Connor, an assistant professor of psychiatry at the University of California, Los Angeles, showed that when patients with complicated grief looked at pictures of their loved ones, the nucleus accumbens — the part of the brain associated with rewards or longing — lighted up. It showed significantly less activity in people who experienced more normal patterns of grieving.
“It’s as if the brain were saying, ‘Yes I’m anticipating seeing this person’ and yet ‘I am not getting to see this person,’ ” Dr. O’Connor said. “The mismatch is very painful.”
The nucleus accumbens is associated with other kinds of longing — for alcohol and drugs — and is more dense in the neurotransmitter dopamine than in serotonin. That raises two interesting questions: Could memories of a loved one have addictive qualities in some people? And might there be a more effective treatment for this kind of suffering than the usual antidepressants, whose target is serotonin?
Experts who question whether complicated grief is a distinct disorder argue that more research is needed. “You can safely say that complicated grief is a disorder, a collection of symptoms that causes distress, which is the beginning of the definition of a disease,” said Dr. Paula J. Clayton, medical director of the American Foundation for Suicide Prevention. “However, other validators are needed: family history and studies that follow the course of a disorder. For example, once it’s cured, does it go away or show up years later as something else, like depression?”
George A. Bonanno, a professor of clinical psychology at Columbia known for his work on resilience (the reaction of the 85 percent of the population that does adapt to loss), was skeptical at first. But, Dr. Bonanno said, “I ran those tests and, lo and behold, extra grief symptoms were very important in predicting what was going on with these people, over and above depression and P.T.S.D.”
Regardless of how complicated grief is classified, the discussion highlights a larger issue: the need for a more nuanced look at bereavement. The DSM-IV devotes only one paragraph to the topic.
Studies suggest that therapy for bereavement in general is not very effective. But Dr. Bonanno called the published data “embarrassingly bad” and noted they tended to lump in results from “a lot of people who don’t need treatment” but sought it at the insistence of “loved ones or misguided professionals.”
Even if clinicians did identify people with complicated grief, there would not be enough therapists to treat them. Despite Dr. Shear’s “terrific research” on the therapy she pioneered, said Dr. Sidney Zisook, a professor of psychiatry at the University of California, San Diego, “there aren’t a lot of people out there who are trained to do it, and there aren’t a lot of patients with complicated grief who are benefiting from this treatment breakthrough.”
The issue is pressing given the links between complicated grief and a higher incidence of suicide, social problems and serious illness. “Do the symptoms of prolonged grief predict suicidality, a higher level of substance abuse, cigarette and alcohol consumption?” said Holly G. Prigerson, associate professor of psychiatry at Harvard Medical School and director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston. “Yes, yes and yes, over and above depression; they’re better predictors of those things.”
In an age when activities like compulsive shopping are viewed as disorders, the subject of grief is especially sensitive. Deeply bereaved people are often reluctant to talk about their sorrow, and when they do, they are insulted by the use of terms like disorder or addiction. Grief, after all, is noble — emblematic of the deep love between parents and children, spouses and even friends. Our sorrows, the poets tell us, make us human; would proper therapy have denied us Tennyson’s “In Memoriam”?
Diagnosing a deeper form of grief, however, is not about taking away anyone’s sorrow. “We don’t get rid of suffering in our treatment,” Dr. Shear said. “We just help people come to terms with it more quickly.”
“Personally, if it were me,” she added, “I would want that help.”
I am so sorry... can you share more about your story, what happenend? I am currently in Premature Labor in the hospital and it's very scary. I lost a little girl at 21 weeks this past February 2009 - so I can empathize and when it's so fresh, you just have to take it day by day... I cried out to God, I leaned on my husband and my close friends... They allowed me to talk about her. I HAD to talk about her, it helped... Some people keep things in, it depends on how we grieve...
I'm scared out of my mind right now... and would love to know more about your story, if you feel up to sharing? Maybe it will help you to talk about it too? If not, I understand completely...
I will keep you in my thoughts and prayers...
I'm so sorry.... I will be thinking of you.
Today I have to get things together for Khristian my son, the days seem to be getting harder to deal with. I thought that with time you know as the day goes by that things would be easier but it seems worse. Especially when my baby looked exactly like his father everytime I look at him all I can see is my baby's tiny face every little feature exactly alike, its hard but I think it makes me love him even more. He seems to be taken this harder than me which is hard to believe but is actually staying stronger for me, to support me. My story is at 18 weeks I had PROM and the doctors told me that I wouldnt make it another week being pregnant and I should definitely consider terminating my pregnancy but no matter how hard I tried I couldnt do it. So I decided to continue on with the pregnancy, they told me that if I could make it to 24 weeks when the baby is considered viable then I would have to be hospitalized for the remainder of my pregnancy. When 24 weeks can I was admitted to the hospital I stayed for three weeks. One night I just started feeling weird my stomach just started getting hard and tightening, I was having contractions, but they werent severe, so the next morning I told my nurse what was going on and she told me that maybe it was just Braxton Hicks contractions or some type of false labor, I prayed and prayed that they would go away. That morning during a routine NST the machine began to pick up my contractions and they realized that I was really having contractions so they tried several different medications to make them stop and I thought they had. I began to take a medication that suppose to relax my uterus muscle twice daily, but my contractions continued on but not as much as before then three nights later I was in so much pain I had to call the nurse in the middle of the night then I was then moved to Labor and delivery and they really didnt believe I was in labor. They decided to just let me stay at labor and delivery that night, then while I was getting set up in my room, I felt a gush come out of me and I told the nurse and she said,"oh thats just some discharge and blood" but then not even a minute later the baby's heartbeat started to drop with every contraction, meaning that he was being pushed down into the birth canal and it was hard for the machine to pick him up. She looked at the other nurse and I knew then something was definitely about to happen, they phoned my doctor and he ordered them to check me and I was fully dilated and they could actually feel the baby, and they insisted that the baby was head first, but when my doctor got there he determined that the baby was actually butt first and I was rushed over for an emergency c-section, I thought we both were about to die. When I finally awoke I heard a baby in the distance crying, I guess that was my baby but I will never know, it was 6:09 a.m. weighing 2 Ibs and 3 ounces.They said he was stable, then later that his lung had collapsed and they had him on 100% oxygen and they were doing all they could do. I seen him that day and I was so excited and happy my baby that I had prayed for was here and I had no doubt in my mind that he wasnt going to make it. Later that night the NICU doctor had a talk with me and his father and warned us that he might not make it through the night, but I had my mind made up that nothing was going to happen to him and he made it thru the night. That morning I gained the strength to actually walk to the NICU, when I got there his heartbeat was going strong, then as soon as his father got there he heartbeat just dropped and within thirty minutes he was gone, we watched the life leave from his body, he went pale. I knew in my heart that he would make it and was in disbelief.
I'm so sorry for your loss. It's unimaginable. :( You'll be in my thoughts and prayers.
I'm deeply sorry for loss I know the pain that you are going thourgh I know there is no words to tell you to make you feel better. Remember God is there for you and you can do all things through christ which strenghts you . I lost my baby girl when she was 11 months old. It has been 8 1/2 months since we had to say good bye to our precious baby. I can understand the fact oyur not able to eat or sleep I stayed that way for about 2 months . We are here for you if you want to talk . God Bless you
My heart and prayers goes out to you! May you be comforted and given strength.
Oh my goodness, you had such a long ordeal too... You did such a good job too, you tried. It appears to me, that the hospital didn't really seem to take your situation seriously? Do you feel that way? Like they didn't do an ultrasound to see if maybe the baby was breech ahead of time? We all know how delicate Preemies are at that size... so if he had any struggle during the birth, that would be very traumatic for the little guy?
I had so many things go wrong with my last pregnancy, that I could go on and on... If you decide to get pregnant next time, I would seriously try to find a doctor and explain all your concerns...
I know that it's probably very difficult to even think about that. For me, however, after my loss, I started to focus on trying again and it really did help me to heal. It wasn't about replacing the baby I lost, just replacing the void of that baby being ripped from me.... too soon.
If you ever need to talk, my email address is: dawnat1111@yahoo.com
Many hugs... and lots of prayers.
Dawn
This is so upsetting to read. I hope you can find peace in the months to come. I will pray that you can.
I am so sorry. I lost one twin 12 days the other a four months later. I know how you feel. I took it minute by minute to hour by hour then day by day now week by week. I'm sorry your hurting. It's just not fair our babies had to go.
you did your very best and am sure your little angel in heaven appreciates every single bit of it. It's hard; give yourself time and pray unceasingly to God for the grace to accept things as they are. I've lost two babies so far and it hurts so much each time. you never really forget and sometimes it hurts so bad; but you learn to cope with it. You are in my prayers!
Today is Khristian's funeral, I am trying so hard to tell myself that today isnt going to be so bad but I think I am lying to myself. I need to be strong today and its hard to find the strength, but I am praying that God gives me some type of understanding and definitely strength. I never imagined this would be me...I suppose to be planning a baby shower.
I would like to thank everyone for there support you cant imagine how much it means to me and I really appreciate it, it is so amazing how at a time like this total strangers can be there for me, but I cant even get a simple phone call from half of my family members. So thank you so much.
I am so sorry about your dear little Khristian. By the time you read this I imagine you will be home from his funeral. I will never forget the day of my sweet Samuel's funeral. It was hard but having everyone together and feeling how much they loved us made me feel a little better. Samuel was my son Jacob's (pictured above) identical twin. Our story is a long one and if you feel up to reading it you will find it on our page. We lost him when he was 2 days old. That was 2 years ago. The pain does go away - not completely - but it lessens with time. I have learned to have a happy life again but I still live with the grief over losing Samuel - it just doesn't take over my life the way it did right after we lost him. I don't know if you have heard the term "new normal" but that is what many parents say...that we now live a new normal. I identify with those words, because it is like I wrote I am happy again but I will live with his loss and it has forever changed my life. Please keep in touch with all of us...I think it will help.
Elise
Hi Samantha,
Im absoutely so sorry to hear about your loss. im so thank ful for the site. If i didnt find it i dont know what id do or if id still bere here, where are you from? Im from Florida. Ive exchnaged numbers with alot of mommies on here to talk and to be there for one another. My name is Jill by the way and im 22 years old. I had severe pre E had Naomi had 28 weeks on April 27 2009 and she lived for 5 weeks, and got very very ill and passed June 1 2009. I keep asking why why me why us why them? But I have to have faith and keep on going and believing. I wanna help other mommies out there the best that I can because helping others helps me. please call or text me, im a huge texter but also love talking, 954 670 3705. please. Youve came to the right place, KEEP WRITING, It helps me alot.
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