<p>It may seem shocking to some, but when a baby is in a critical state or is born still, you sometimes only get one opportunity to have this memory.</p>
<p>Shortly after D2 was born, a friend had a term stillborn daughter. Her remembrance ceremony was beautiful, her father was a potter & had made impressions of her feet into a jar & there were lovely photos of the family together in the hospital holding their baby.</p>
<p>While I was still in hormonal upheaval ( as was the mom), it was a beautiful gathering & I hope it helped them. ( there wasn’t any children present-) They also went on to have two more children, but I am sure they will never forget their first.</p>
<p>A few months ago, a friend of mine from high school had twins, and they were VERY premature… Her Facebook wall had an outpouring of comments saying things like, “CONGRATULATIONS! You’ll all be in our prayers!!” and “Welcome to the world, little ones! We’re all rooting for you!” and “TWINS! How wonderful! Congratulations! You’re in our thoughts; please keep us updated and let us know if there’s anything we can do!”</p>
<p>I was struck by the grace of the responses and remember thinking to myself, “Oh, THAT’S the right way to handle this situation; I’ll have to keep that in mind.”</p>
<p>My son (now 24) is a twin; his brother died at two days old. I heard every single awful remark possible in the first months and years. And there really wasn’t any thing anyone could say that didn’t leave me in tears. (That’s still kind of true, actually.)</p>
<p>The right things to say include “oh, that must be very difficult for you, is there anything I can do?” “please know you can call me any time to talk, even at 2 AM”. As pointed out above, “you can have another” is terrible.</p>
<p>One of the things that really helped me to get through was to realize that a child’s death has become a very rare thing. It used to be much more common. At the Daughters of the American Revolution museum in DC, there is an exhibit of women’s needlepoint and quilting and so on. Most of the pieces there–beautiful elaborate work–honor the death of a child in one way or another. When you read the diaries of pioneers, you realize that some of those women on the Oregon Trail stopped, gave birth, and buried a dead child next to the trail–and then moved on. </p>
<p>A friend is a photographer for Now I Lay Me Down to Sleep; they do beautiful work, and they find that work very rewarding. </p>
<p>Please keep us posted on how the baby is doing; we will all be thinking of the circumstances.</p>
<p>Thank you all for your kind and thoughtful responses. Actually I am in tears now from reading your own experiences. I was blessed in this area. I will respond to my friend with what I know will resonate with hope and kindness and the joy of a new grandchild.</p>
<p>Hayden, I celebrate my sons’ birthday and mourn on the anniversary of my son’s death. (Grammar police: please note careful uses of the possessive in that sentence.) I have discussed my mourning with my son and his reply was along the lines of “I never knew him so I can’t really mourn what might have been.” His perspective is very down to earth. (Elvis Presley had a twin too–Jesse Aaron Presley… Imagine!)</p>
<p>babyontheway, I laughed, (grimly) at your suggestions…I don’t think it’s out of place to list some of the worst transgressions people make in these situations. </p>
<p>My daughter was premature, in the NICU for 3 weeks, and I was dangerously ill at first too…somehow it never really occurred to my husband that there was anything really wrong. He was just so proud and happy and anxious to show her off-- desperate emaciated thing that she was. So, I think congratulations are absolutely in order-- as well as offers of help and expressions of hope and faith.</p>
<p>A friend of mine lost her daughter in utero at 28 weeks. She knew the baby wasn’t going to live long if she was born alive. In addition to photos and a video, she had a necklace made with the imprint of her child’s footprints. It meant a great deal to her. I imagine the hospital helped with that.</p>
<p>I am very touched by this thread and want to reach out to the moms who have had difficult experiences.</p>
<p>I want to give support to babyontheway. I can see those responses touched a sensitive nerve, but I think she was just trying to warm folks what not to say in case someone blurted out something unpleasant. Again, my condolences to those who were hurt by those remarks.</p>
<p>I lost a twin in utero. His twin is my wonderful 21 year old son. No one saw this lost child, and I can attest that people said the weirdest things. The doctors were comforting. The child was miscarried early one; there must have been something seriously wrong with the fetus. That helped.</p>
<p>I think joy is never misplaced. If the friend didn’t want folks to know before the child was safely out of the woods, she wouldn’t have told you. Radiating joy, acceptance and love can only raise the energy of the space and help the baby.</p>
<p>In fact all the love felt on this thread will help too. I believe in remote prayer (though I am an atheist. I think the energy finds its way.)</p>
<p>So thank you for the chance to pour love in this baby’s direction. I wish the baby and its family (what was the gender? I don’t usually call a baby an it) the best.</p>
<p>When I was young a friend got pregnant while single. I congratulated her, and she said I was the only one who who congratulated her, and I do think she was waiting for congratulations.</p>
<p>We want to celebrate with folks as much as grieve with them.</p>
<p>And if the parents in this situation don’t know about it, look up CaringBridge.org. Free website to keep everyone updated about a critically ill newborn or end-of-life or critically injured person. It must save the parents a lot of energy to not have to call each and every family member each day to update.</p>
<p>I came back to this thread to apologize to you, babyontheway. I overreacted and have no excuse other than the fact that the painful experiences I had are still very close to the surface all these years later. I’m sorry if it seemed like I snapped at you. I shouldn’t have done that and it’s true, that some people do need to be told not to say those insensitive things you listed. You’d think it would be common sense but it’s not. </p>
<p>I’ve spent a lot of time conducting grief counselling for parents who have experienced a perinatal death. I’ve certainly learned that it is difficult for those who have not gone through this to truly understand the grief one experiences. The memories come flooding back so quickly. I suppose in that regard it is similar to any traumatic time in life. </p>
<p>The photos are such an important part of recording the time spent in the NICU. Times have changed so much through the years and hospitals are much more attuned to doing what’s right than they were 25 years ago.</p>
<p>Continued good wishes to the OP and her friend’s grandchild tonight.</p>
<p>Saying the right thing continues to be important for years to come. A cousin whose first child died after a few days went on to have 3 more beautiful/healthies, all young adults today. Still, whenever she’s asked the very innocuous question, “how many children do you have?”, rather than say 3, she prefers to answer, in matter-of-fact tone, “Four but one died.” It’s just how she handles it.</p>
<p>We just picked up our 26 week preemie at the airport. He is now a 26 year old young adult. I’m thinking about the little infant that the OP posted about as well…and hoping for the best. I remember the doctors telling us…no one can take away your hope. May this little babe improve, and thrive.</p>
<p>I just got an update from my friend and her grandchild is improving! The baby is beginning to breathe on his/her own and the parents were finally allowed to hold it! There are more challenges to come, but they are delighted with the progress and feel that this little one is such a blessing. This is such a Christmas gift!</p>
<p>Thanks for all of everyone’s good thoughts, wishes and prayers and advice. You know you get to my age and think that you know what to say in about any situation, but I guess you really don’t.</p>
<p>I haven’t read beyond the first couple of posts so I may be repeating what someone has already said. You can wish them congratulations and reply by saying that the medical intervention that they are doing now with babies is nothing short of a miracle. When my twin babies were born 8 weeks premature they did’nt look too good except to me and my husband. To us they were perfect and beautiful and we knew they would make it out of that ICU with the wonderful help of the team of doctors and nurses that cared for them. Your friend is fortunate that today a baby with problems at delivary are able to receive such care. A positive attitude makes it so much easier on the parents and that is the attitude that the parents need to put out there to the doctors caring for that precious little one. Keep telling them to think positive and not to accept anything less than positive thoughts. Babies are stronger than we think and speaking of my own they were fighters from the beginning. Years later one of my sons developed a life threatening illness and I honestly did’nt know if he would make it through… he fought and continues to fight and this May he will graduate Cornell University. My babies were amazing!!!</p>
<p>srw, thanks for the update! Wonderful news! I suppose this may turn out to be the parent’s best Christmas ever! I hope the baby continues to improve and does well.</p>
<p>Great news…sorry to post before reading the update…but happy to hear the wonderful news. It is nothing short of a miracle that medical intervention has come so far for the most vulerable little ones.</p>
<p>You know you get to my age and think that you know what to say in about any situation, but I guess you really don’t.</p>
<p>Well almost anything would have been better than the reaction of my grandparents- my oldest was in isolation in the NICU, she had been born by emergency C-section, so I wasn’t real mobile yet & I think they came after she had abdominal surgery when she was about 36 hrs old.</p>
<p>She had tubes and stuff coming out everywhere & looked like heck, cause she had dropped below 2lbs, but actually she was doing much better than expected so I was pretty happy.
My grandpa had never seen anything like that in his life, so he just kinda clung to the doorway so he wouldn’t pass out.</p>
<p>He did live long enough to get to know her, and they were great friends- so I am sure that made up for the initial shock.</p>