Losing a baby/babies, what do you say?

I have read so many stories from those of you that have lost a baby or babies in the NICU and even before, and each time my heart breaks as they are having to mourn their loss while still dealing with another baby still in the NICU.  If any of you are like me, it’s terrifying enough when you are in the NICU, but I cannot fathom having lost my son.   

My son caught some crazy virus while in the NICU (not RSV, they were never able to identify it) and quit breathing on his own for the week of Christmas 2009.  He hadn’t even made it to 3lbs yet, and was so tiny laying there as I watched a machine breath for him.  During this week, one of the twins next door to us became an Angel and my heart broke seeing the parents each day and trying to imagine what they were going through and at the same time hoping and praying that I too wouldn’t be in that boat.

Then you finally bring your baby home, and the fear never stops as recently one of the moms on our preemie parenting board on BabyCenter lost her 17 month old daughter suddenly and unexpectedly as they didn’t realize her heart was enlarged.  I don’t think our fear as a parent will ever cease, we just have to love our little ones as much as we can and enjoy each day with them.  Even the days they are teething, not napping, screaming non-stop and we have only survived on a few hours of sleep…those days are hard, but our once tiny little miracles are still here, so I stop being frustrated, hug my little boy, and tell him I love him.  Then he screams louder…but he screams.

Recently on our FB page, I brought up this topic and asked parents that have lost little ones what they want to hear or not hear.  Below is this posting, so maybe it will help some that know someone going through this, and PLEASE feel free to add your comments.  Hugs, love and prayers to all that have been through a loss, either before birth or after.  If you need support having gone through a loss, please also check out Faces of Loss, Faces of Hope.

Posted 5 JAN 2011:  On occasion there are topics I’d like to bring up, but they are regarding the big pink elephants in the room, so today… do parents of a surviving multiple get enough support? Do you want to talk about about your angel or just your survivor? There have been a lot of losses of a multiple lately, so I think it’s time for you to tell your story and what you need or want/don’t want to hear. ♥

It’s a Preemie Thing I am never quite sure what to say as it’s such a hard topic and I can’t imagine…that is why I’m curious, this to help others understand and support you better as well!! Hugs to all of you who have had losses (singles or multiples), I can’t imagine what you’ve been through.

  • Morgan: this was my babies’ first Christmas, but only one of them was there to open presents. February 6th is their first birthday and February 7th is when we lost jordan. trey is doing extremely well and has caught up. the twin-to-twin syndrome foundation website is a great help to me, but I’ve never faced something so hard in my whole life.
  • Jessica:  well we lost one of our twins last February. I want to remember my twin that we lost and i try and talk about her as much as possible.. i feel like it just makes people feel awkward and they don’t know what to say so it makes me feel like i shouldn’t say anything around people. I think people should never be afraid to comfort those that have lost a baby or a multiple. It makes me happy when someone brings her up. makes me feel like people haven’t forgotten her! 🙂
  • Sarah:  I would like to hear ppl’s stories…..I’m scared our next pregnancy will be harder than our last!! <<HUGGS to ALL>>
  • Morgan:  This is definitely a really rough topic, and I think it varies for each hospital and family. At the nicu mine were/are in, there is absolutely no support. I’ve seen the social worker twice in the past two and a half months. I’m going to see… a psychologist, but there was no recommendation from the hospital or anyone there to talk to about it. Having to tell the story to strangers is awful, but its also difficult to talk to family and close friends about it because they feel the pain too. I still don’t talk to my boyfriend about it very often because once I start crying its hard to stop. Its such a horrible topic to bring up as I’m still not sure how to handle it, and whenever tanner makes progress its very bittersweet, because I should be celebrating that in both boys, not just tanner. Its also really hard knowing that not only are our lives changed, but tanner is going to grow up completely different than how he would have with his own built-in best friend.
    i think the worst thing I’ve been told is that I need to stay strong for tanner. He’s not going to know either whether or not I break down about it, and when people say that it makes me feel like they think I’m not going to be able to handle my son.  Hopefully things will get easier as time goes on, but since everything is still so fresh its extremely difficult to deal with.
  • Amber:  I lost my son 7 mo ago. I like to talk about my loss to other people as its my way of dealing with the grieving process. I have a blog I started when my water broke at 20 weeks with my twins. I am still blogging to this day. I have met alot… of people thru the blog that wants to know what my little miracle is up to. The only thing I DO NOT want to hear is “you still have one.” I will say that to an extent but people think that because one twin survived I should be okay. No I still lost my son. I should have had 2 babies in the NICU, 2 babies at xmas, 2 cribs in my room right now but I dont. Yes I am grateful beyond belief I walked away from my Pprom experience with one, but it still doesnt make it any easier. We have a cubby in our entertainment center set up with Aydens ashes and pictures of his feet (the only thing we have) a few momentos we got thru out the months and some xmas gifts he got this year. I always look in the sky and talk to my little star. He wont be forgotten and I wont let his sister forgot how unbelievably lucky she is to have a brother that fought those 3 weeks with little amniotic fluid til she got to 24 weeks 1 day and got both steroids and then passed. Its like he knew that he had to hold on til she was “viable”. I have 2 strong angels! It is by far the hardest thing I have ever had to encounter, but at the same time, its made me who I am today, and a stronger person!
  • Kathy:  I am morgans boyfriends mother. And she is right. They really didn’t get any support at all.
  • Amber:  Morgon Im sorry about your loss! Reading your last comment is how I feel too. My family get it, but they dont. They havent lost a child. And I feel the same about Brielle growing up different without Ayden. Life wont be the same. And our lives are bittersweet. Everyday!
  • Jessica:  Morgan I am so sorry.. I hope you can find some support.. it is so hard to go through this without support from a lot of people. I am sorry the hospital u were at was not so understanding. that makes me so sad. I lost my twin 11 months ago …and it is still hard everyday.. i started a journal that i write to my baby that died. it helps a lot.. also i read books about infant loss. i love the march of dimes website that has a bunch of volunteer options for people.. we are also walking in honor of Paetyn who passed away in march for babies this year.. It will always be hard and you will always miss your precious angel but i find that you do find more strength as time goes by.. The holidays are the hardest things to get through in my opinion.. If you need someone to talk to i hope you know i am here anytime!! email is jnktom5@gmail.com.. sometimes it helps to talk.  Tanner is lucky to have you! and you can mourn over your lost baby how ever much you want.. don’t feel like you need to be this perfect mom while you are mourning.. You are a perfect mom! 🙂 you will love tanner more then ever especially since you lost his twin.. So sorry for your loss. 🙁
  • Drew:  We had some support but probably needed more. But maybe we just weren’t ready to accept the support. It was all a blur, especially with our other twin in the NICU for over 90 days. We didn’t talk about it much because we didn’t want to upse…t each other. This probably wasn’t a good thing. It took a major toll on our marriage.  I agree with others. It won’t be the same. We have twins but only get to see one grow up. And I hate when people say at least you have one. That doesn’t make it better.
  • Michele:  I gave birth to my twins in May of 2007 (@ 23 weeks gest.). Nick passed away after a 2.5 day fight for his life but his lungs were just too weak and started to bleed. Even now, Celebrating Kenny’s birthdays without his twin brother really h…urt…deep in the heart. Every holiday, every first for kenny…I keep thinking that we should have been doing this for Nick as well. I hear about all these celebrities having twins and deep down inside I am so angry that god wouldnt/didnt give me the chance to be a mom of twins for more than a couple of days. Even after I surprisingly got pregnant with my 2.5 year old (right before Kenny came home from the NICU), I questioned why! Why couldnt God just let me have my twins. Why take one of my babies back to only have me be pregnant (while on the pill) with another…I couldnt and didnt want to go through it again. I wanted my Nick back. But now I understand why Gina is here…she has taught Kenny soooo much. She is his “makeup” twin. She taught him to walk when they said he wouldnt. She is his little helper. I never want anyone to forget our Nick…ususally we get…”are they twins”…meaning Kenny and Gina…and that opens up the whole conversation of Kenny & Nick’s birth and Nicks death. On Kenny’s birthday cake, we put an angel on it to remember Nick and we also talk about him. I hate that we are now a family who has lost a child….it really sucks. A lot of Post traumatic stress involved with Nicks passing and Kenny always being very sick.
    Thanks for letting me share my story…I have a blog…The Tomecko Echo that talks about all of it.
  • Drew:  And I do want to talk about him. It sometimes makes others uncomfortable, but I will not forget my son.
  • Marie:  Amber – I’m so sorry about your loss. Your story caught my eye because my water broke really early as well. I just had one baby and never had to go through a loss but am so sorry about yours. I have a blog that I started back when my wat…er broke also and would love to follow yours if you don’t mind. What is your website called? Ours is: thelincbetweenus.blogspot.com. I’ve also found, like you said, that the blog community is a huge support through lots of things.
  • Morgan:  thank you guys 🙂 and amber I definitely know how you feel. That ‘at least you still have one’ is freakin awful. I actually had that on my status the other day cuz I couldn’t believe someone actually said that! I used ‘how bout I cut off one …of your legs and tell you at least you still have one’. It doesn’t make your loss any easier, if anything its harder looking at him every day knowing he will never know his brother and ill never get to experience these things with him. Even hearing the word ‘twins’ makes me feel like I’m losing it. Seeing other twins in the nicu is depressing. We lost christian to kidney failure and it sucks because I never ever thought that would happen. In everything I read on preemies I don’t think I ever saw anything about preemies dying of kidney failure. Anddd right after tanner had heart surgery there was a new baby in there about his size whose name was christian. Its like a roller coaster ride n every day is different.
    I try to read about other preemies but I find myself getting resentful of babies who had it worse n made it, so i stopped readin. I think I’m going to try the journal thing, I just don’t know how tanner would feel if he read it. He’s not even home yet and I’m worried about him reading something that might upset him haha. I swear I’m a mess.
  • Heather:  This brings me comfort .. We are all here on the earth to help each other with love and kindness, I care about all of you
  • Deidre:  I do think it is different for everyone. We lost our daughter 3 days after the twins were born back in July. I think I immediatey buried my grief to survive. I was too preoccupied by worrying about our surviving twin boy, running after o…ur toddler and working full time. Once our son came home and I was home with him the grief really hit especially with the holiday season. The worst was seeing the stockings hung and knowing there should be one more…that and all the adorable girls clothes. Many people I think thought we were through most of our grief since time had past. The worst thing people say or insinuate is that we should just be grateful that our son is doing relatively well for 24 weeks as if that somehow makes up for losing a child. The most thoughtful thing anyone did actually came from the director of our toddlers daycare. She had a star purchased in our daughters name with a framed plaqueand coordinates. OUr 2 year old is really into stars and she thought it would be a great way to talk to the boys about their sister and so they can find her in the stars.
  • Pamela:  I am a mother to a surving triplet one passed away on utro and one 4 days after birth. Its really hard my husband an myself express our feelings in diffrent ways. I feel that some times its tabo to talk about it especally with extended family not on my end but theirs? Anyone feel the same way? My daughter is now 10 months old an I am not really sure thats its totally hit me yet, I mean I think about everything daily and cry…… I wonder if it ever gets any easier???
  • Audrey:  I can’t even imagine someone saying ‘at least you still have one’ even if it’s said with the best of intentions it just sounds so heartless. Like its some sort of conciliation prize. When it is a blessing. I am so sorry for the losses you have suffered, your little angels are forever with you in your hearts, and watching down on you from heaven.
  • It’s a Preemie Thing Thank you all for opening up and sharing your stories about your angels. I also appreciate all your input!! ♥
  • Amber:  I am so thankful that you posted this thread. I am raising a surviving identical twin boy. His brother was pronounced stillborn in womb at 23 weeks and I held them both in until Bronson was born at almost 30 weeks. It was the hardest thing …I have ever done in my life. I had so many “well meaning” people tell me that I was lucky to be bringing home one baby. I don’t even know how I survived almost 7 weeks carrying around a dead baby. It was not easy. I spent a lot of time angry, but also got the comments that I needed to keep it together and be strong for my surviving twin. I did this to the fullest and my baby boy is a happy and healthy 3 year old now. I think that in the midst of being so strong I forgot to grieve and I have major anger still over being forced to push through being sad about my other son. I know that it makes people uncomfortable when I mention that I have two sons, but the fact remains true that I will always be a mommy of one on earth and one in heaven.  We currently try to involve the topic of Jackson into meaningful events in our life. Our son knows that he has a brother and mentions that things about him. Someday I hope to share the story of how he came into this world and fought against all odds after being born just over 2 pounds. Thanks again for all the messages. Hugs to all of you mamas experiencing losses of any kinds. They truly do make footprints on our hearts.
  • Lisa:   As a NICU caregiver, I always try to honor ALL of the babies you created. And I truly WANT you to talk to me about what you are feeling. I learn so much from my patients’ parents that makes me better at what I do and can offer future families. God bless your ♥ s!
  • Manel:  First of all, good on you Julie for opening this very sensitive subject that everyday people don’t want to hear..its never easy, but its ok to cry, its ok to talk about it..yes we are lucky and grateful to have our premmies, but we did go through a lot of heartache which doesn’t just go away..may those angels always be around you..sending you all my love and prayers..from down under(I have a 24weeker who is 17months old now)
  • Stacey:  I definitely want to talk about my angel as well as my survivor. I need to talk about him! My twins were born at 24 weeks, 3 days, a week after my water broke prematurely. No one wants to talk about it. The only people that understand and d…o want to talk about it are people that have experienced the loss of a child. I have one friend who lost her preemie son born at 26 weeks and she is the only one I can talk to and I know truly understands. My daughter is now 14 months old and doing wonderful. I am so happy to have her and have her doing so well! She keeps me going! I want people to talk about him and remember him. I agree with the others in that I don’t want to hear that at least I have my daughter. Yes, I do and I love her more than anything, but I still lost my son. Also, the worse thing that I have heard, from more than 1 person, is “imagine how hard it would have been to bring home 2 sick babies on O2, apnea monitors, etc….” from the hospital. Bringing home 100 sick preemies would have been 1000x’s easier than losing my child.
  • Amber:   Marie our blog is www.petersontwinmiracles.blogspot.com
  • Stacey:  Amber, I read part of your blog. We have a lot in common! We are just further along in this journey than you. Our twins were born Oct. 17, 2009. If you ever need someone to talk to, I’m here. It’s nice to talk to someone who has been or is going through the same things you are:). Your daughter is beautiful! I “liked” your new facebook page

Again, thank you for all your input, and hugs to all of the parents that have had to go through this.  Thank you for sharing about your sweet little Angels! <3

About the Author: Julie of IAPT Howard

4 Comments + Add Comment

  • Thanks for posting! I lost Jack’s identical twin at 19 weeks. It’s supportive to hear others who have gone through similar situations .

  • Yeah thank you for posting this also. I lost one of my twins six months ago. My daughter died after 28 hours. My twins were born at 27 weeks. My son is for the most part growing and doing well. I don’t think there is anything anyone can say. I would just tell people to think before they speak because we heard a lot of stupid things that people just didnt think before they said it. They meant well but did not come out that way. I think people are also so afraid of talking about the child that has passed they just dont say anything to you at all. Not talking to me because they are uncomforable is also not good. I feel worse like I did something wrong because my babies came early and my daughter did not survive.

  • I lost Peter’s twin in the first trimester. I’m not going to claim that this is as hard as losing a twin in a later trimester or after birth, but I still ache every time I see or hear about twins. I tell myself that Peter had a twin, and if it were not for my uterine anomaly, he would probably still have a twin.

    I didn’t cry after I learned about the demise of Baby A the way I did when I miscarried a few years ago. I knew that I was lucky that one baby had picked a good spot to implant on my uterus. And after I went into preterm labor, I felt lucky again, thinking how early I might have gone into labor if Baby A had not passed away.

    But there’s still a pain. I was told at my first ultrasound at 7 weeks that the embryos looked PERFECT with their hearts beating at 140 and 141 beats per minute. I was told I would be a great mom of multiples. And I spent 5 weeks dreaming about double strollers and cute twin names. Sometimes people will say that vanishing twin syndrome is very common. And yes, vanishing twin syndrome is common, but losing a twin after 8 weeks of pregnancy is much less common.

    But then again, I AM grateful. Given my anatomy, I’m lucky to have had 1 live birth out of 3 embryos.

    What do you say? I have no idea. My grandmother told me that she would pray harder for Peter after I lost his twin. No one else said much of anything, and I guess that’s alright. There’s not much TO say. You could tell me that at least I still have Peter, and I wouldn’t mind because honestly, that’s exactly what I tell myself.

  • I am so sorry for everyones loss. The unfortunate thing is this happens EVERY day to many families.
    I would like to bring awareness to an organization I volunteer for called Now I Lay Me Down To Sleep ( http://www.NILMDTS.org ) .
    We are an organization of professional photographers who volunteer our time by providing families professional portraits of their babies who are born sleeping or are diagnosed with a terminal condition. I pray that none of you will ever have to experience that kind of loss again, but you may know someone who will or you may be affiliated with a hospital that doesn’t know anything about our services. By visiting our website you can find an area coordinator who is local to you who you can talk to about our services and maybe help us spread the word.
    We are there to help families through their process of healing by providing them images free of charge to preserve the memory of their child.

    I just felt the need to share and not only as a volunteer professional photographer for the organization, but also as a mother who has lost , again I express my condolences to all of you!

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