Late Term and Child Loss

I belong here now

i found out yesterday baby has Trisomy 18 and will not survive. This was the worst day of my life. We are awaiting a phone call on Monday to discuss next steps. Which is likely induction. I'm not going to lie I'm terrified. I had a horrible experience with it with previous pregnancy.

Im currently almost 22 weeks pregnant. Has anyone been through something similar here?

Re: I belong here now

  • @cmillar36 I am so sorry for what is happening to you. And for your family and your sweet baby.  

    My son had Trisomy 18 although we did not know it at the time. He was born still at 33w.

    I was induced as well, but I have nothing to compare it to as this was my first pregnancy.  I posted his birth story here:

    If I were to give you advice it would be to get mementos. They are so important -- ask the hospital for footprints, handprints, and birth details (weight, length, sex), and photos. Ask the nurses to prepare the same type of hospital bracelet that any newborn would receive; even though your baby will never wear them, they are something for you to look at and cherish later as a reminder that h was a part of this world for a short and beautiful time. You don't have to look at them right away, or ever, but you only have one chance to get them. The hospital staff should be able to do this , but if not there is an organization called Now I Lay Me Down To Sleep that will.  

    Pack good, healthy food. 

    Pack music to fill up the silences. 

    Pack good quality Kleenex.

    Hugs and tears and love to you. I wish no woman would ever have to experience this. 

  • Thank you for sharing. Unfortunately my phone won't allow me to open your story.

    I also wish no one ever had to experience this kind of pain.
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  • MamaBishMamaBish member
    edited February 2016
    I'm so sorry this is happening. It's so painful. My baby did not have trisomy but I was induced at 28 weeks. 
    I agree with Alanna above, get pictures even if you don't think you will ever look at them. take it easy on yourself and your SO. So many hugs to you!
    I post this picture all the time and I really believe in it. It has helped me get through the days.

    🌈  Preemie 2016  🌈
    ♥ Stillborn 2015 
  • @cmillar36 I have been thinking about you today.  

    My son's birth story is on the 3rd page of the Third Trimester board if you are brave enought to venture over that way.

    If you do read it, please know that the skin changes that were upsetting to me was because my son passed away several days (at least) before delivery. 

    My heart is breaking for you. I wish there was something I could say to make it easier for you to handle. For me, getting the news was like being hit by a truck. I was walking around and talking, but it was like I was outside of myself. It just seemed so unreal.

    The night before we went in to be induced, one of the ladies gave me some great advice: just focus on getting through delivery for now -- survive labour, spend all the time you can with your baby, and request mementos/photographs. Everything else can wait. Like letting family know, and making decisions about burial/cremation, that stuff can wait. 

    I hope I don't sound too negative. Maybe some of the other ladies may be better to talk to than me. 
  • @alanna3622 thank you so much for sharing your story. I was in tears by the time I was part through. I'm curious where in Canads you are? Wonder if paying for cremation happens here in Manitoba. That's where I am.
  • alanna3622alanna3622 member
    edited February 2016
    @cmillar36 I am in Alberta.

    I am so relieved to hear you are Canadian. I have read in the other loss boards (Pregnancy/Miscarriage board and TTC After Loss board) about the awful strain of having to worry about insurance coverage. And in certain areas of the world termination for medical reasons is so controversial and/or politicized. In Canada, any birth after 19 weeks gestation is eligible for 15 weeks maternity leave. 

    The funeral home in our small town erroneously thought at first that our hospital would handle cremation, so I had to call the hospital to confirm. So your hospital may provide that service. I know that some hospitals arrange for group burials. 

    One thing I wish we had done differently was to order our own urn. Our funeral home only offered two styles of urns for child loss for $200 or maybe $400. There was a wooden model and a fibreglass model, both large-ish and ugly.  It is just a small thing, I guess, but it is something that I have thought of from time to time. I have since seen beautiful urns in other poster's pictures and on the Internet. Some are called "keepsake urns", which seem a perfect size. Sheesh -  I never in my life would think I would find myself knowing this stuff. 

    There is a book I recommend, called "Empty Cradle Broken Heart". It is smart, well-reasoned and well-researched.

    Also the website "Ending a Wanted Pregnancy". 

    I told my husband about your post and we just sat quietly for a bit, remembering our own wait, before the induction. So very sorry. 
  • This is what I needed to hear. I will be calling Service Canada tomorrow morning. Maybe go to an office as I know getTing a hold of anyone on the phone is next to impossible. I'm pretty darned sure I need time off to heal After this.

    I will explore the site and perhaps a trip to library.

    Thanks again for your input. You really don't sound negative. It's much appreciated at this time.
  • If the practical stuff is helping, then great. 

    The entitlement to mat leave comes from the concept that this time off work is necessary to recover from childbirth, regardless of the outcome. There are additional special rules for extended hospital stays for live births, I believe. It is the other portion of leave, the 32 weeks, that is for parenting. If your workplace offers a top up, then you are entitled to that as well. 

    Other tips -- believe it or not, it actually makes a difference to some people whether your baby was born alive, even if just for a few seconds. And it will also matter to people that the baby had a genetic disorder. So if it will hurt or offend you to have someone say "it is better this way," or to compare it to an early term loss, or ask if it was "just" a procedure, then you may wish to be careful about who you share details with. 

    I will PM you my email address in case you ever want to ask a question or get in touch privately.  
  • Thanks again. You've been a wealth of valuable information. In a time that I've truly felt lost and terrified. It has really helped. I will def email if I have questions.
  • alanna3622alanna3622 member
    edited February 2016
    You are welcome. A friend helped me in much the same way, and it feels good to pay that forward. This is the worst club in the world to belong to, but it most certainly is a club. I have only been to my local support group once, but I know I could ask anything of that group of ladies. And @MamaBish and other ladies have really helped me, both on my thread on this board and on the TTCAL board. Loss moms, and especially late loss moms, look out for each other because we know how bad this is. 

    One more thing. Your breastmilk will come in. This website is a good resource:

    Since you have time to prepare, I would definitely buy a cabbage now and keep it in the fridge. The grief counsellor told me about this but we forgot; so much had happened, we were exhausted, and honestly it sounded a bit odd. But with late losses, I think it is different than from weaning. You can become over-engorged; I did, and it was very painful. But the leaves provided immediate relief and my milk was gone within one week after delivery. 

    Good luck my friend, I will be thinking about you. 
  • I just wanted to say I am so sorry for all that you are experiencing. The previous poster has given excellent recommendations - day of delivery spend as much time as you can with your child. Get hand and foot prints, take lots of photos...give as many hugs and kisses as you can to your sweet baby. Thinking of you and your family and sending hugs your way.
  • Frustrated. Seeing OB to discuss results but not til 5pm tomorrow. My sons birthday is Friday party Saturday. Why is this process so frustrating.
  • cmillar36 said:
    Frustrated. Seeing OB to discuss results but not til 5pm tomorrow. My sons birthday is Friday party Saturday. Why is this process so frustrating.
    I'm so sorry, the whole process is definitely frustrating and disappointing to say the least. 

    Another tip about milk production pain relief after, get an ice pack large enough for both breasts. I slept with one and it helped a lot.

    so many hugs!
    🌈  Preemie 2016  🌈
    ♥ Stillborn 2015 
  • So sorry. 

    For our follow up appt, they did schedule us for the last appt of the day - it allowed flexibility in terms of extending the time needed for the appt. 

    Is the party at your house or at a kids event type place? Can grandparents cover for you guys? Gah. Brutal.
  • @alanna3622 This doctor is awesome. I actually used to work with him. But he's notoriously behind schedule.

    Party is at our house as its only his 3rd birthday. I know grandparents would help out. But I'm just so upset at even having to consider moving his birthday. He's excited.
  • Aw poor little guy. Birthdays are such a big deal. Boo. 
  • So we found out the sex. Mothers intuition was right. It's a girl. 

    On induction list now. Might not happen this week though. 
  • Oh hon. Thinking of you. 
  • So very sorry - thinking of you and sending hugs your way. 
  • Wednesday morning is the day. Not a great start to the day for me to get that call.
  • That is so rough. What a long time to wait. 
  • It really is. 8 days after seeing Doctor. Had to wait for bed to be available. This is day before my oldest turns 5. I don't want them to share a birthday. I pray induction goes well.
  • First waiting for test results and now waiting for closure. That is a tough road to be on. For both you and your husband, but especially for you. It is good to have time to prepare, but this is extraordinary. 
  • I'm honestly worried baby is getting weaker? Does that seem like an unrealistic fear? Like she kicked me 2y
    this morning few movements since then.
  • That doesn't seem unrealistic as most Trisomy babies have slow growth and pass away in the second or third trimester. Was baby much of a kicker beforehand? John kicked, but from the beginning it was not much and not hard. 

    You could call labour and delivery at the hospital or your OB to note the decreased movement and see what you should do if you notice the kicks stop entirely? It doesn't hurt to call. 
  • Big mover not huge kicker but I've felt them. I have an anterior placenta. That and fact baby was measuring a full 2 weeks smaller than normal at last ultrasound maybe that's playing in. I've definetely felt movement this morning which I'm taking as a good sign.
  • That is a relief. I hope all goes/went well with the party this weekend. Have you told the kids? Or planning to tell them afterwards?  
  • Party went really well. Just kept it small with immediate family.

    Havent told kids I have no idea where to start. Youngest won't understand. Oldest I don't want to make her cry. Everyone around us knows. Kids school everything. How do you explain this to people. I'm having difficulty thinking of a way. I can't believe in 3-4 days max I won't be pregnant anymore. Really starting to hit home.
  • With the kids we stuck to "sometimes babies don't have everything they need to be born", so that when they would worry about dying we could explain that of course kids and grownups have everything they need to live. 

    The kids processed things in pieces over time, after the initial sadness has passed. Had some questions about whether ghosts are real and that kind of thing. My daughter made a snow baby named after our son, and took care of him etc. 

    It was much harder explaining to adults. Mostly it was easier for me because people assumed it was premature labour. I am dreading returning to work in case there are well-meaning questions. 
  • I remember when it started to sink in for the first time with me. It was like I had gotten through the work/research part, and recognized the horror-of-it-all part... and only then did I see the sadness. The finality. I personally did not enjoy the experience of pregnancy. But it all changed in that last period of time I had before delivery. 

    The only conclusion I have come to is that it is impossible to make sense of this experience. It simply does not make sense and will never make sense. The loss of a baby who is very much wanted before they even have the chance to touch grass and feel sunlight? This is not the natural order. 

    I heard a quotation once that has stayed with me: "I have carried you every second of your life, I will love you for every second of mine."
  • Again, I'm so sorry.

    I know Facebook is often considered "tacky," but it was the easiest way for us to tell a large amount of people at once. DH just posted about how we lost our sweet baby and we appreciate everyone's good thoughts but to please respect our need for privacy at this time. It got the word out quickly and basically everyone we knew (other than immediate family who we called) found out either on FB or from someone who saw it on FB.  Saved us from a lot of uncomfortable conversations.
    🌈  Preemie 2016  🌈
    ♥ Stillborn 2015 
  • We also used Facebook to share with a lot of people the loss of our son. It gave us space and time. It was also heartwarming the support we received after sharing our loss and it helped to carry us. Most people don't press when they hear your child has passed away. Don't feel like you need to say anything just "my child passed away" - no one needs any details because that simple statement is enough. It's truly such a heartbreaking experience and most people can't even imagine the pain. So many hugs to you. 
  • For kids I've heard other parents refer to the book "we were going to have a baby, but had an angel instead." We didn't have any other living children when we lost our son - so I can't give any other advice. Thinking of you.
  • My angel Nora Mae was born into heaven last night at 610pm. We are absolutely heartbroken.
  • cmillar36 said:
    My angel Nora Mae was born into heaven last night at 610pm. We are absolutely heartbroken.
    Oh sweetie, I'm so very sorry. Nora Mae is a beautiful name. Be gentle with yourself. All the hugs to you!
    🌈  Preemie 2016  🌈
    ♥ Stillborn 2015 
  • msunshine123msunshine123 member
    edited February 2016
    Thinking of you and your family. Sending lots of big hugs your way. I love her name - so beautiful!
  • @cmillar36 I am so sorry. What a beautiful name for your daughter. 

    This is the hardest thing you will ever have to go through. 

    I wish there was something we could do other than offer comfort. Like @MamaBish said, please be gentle with yourself. Physically and emotionally. 

    We have each gone down our own version of this sad and beautiful road. You are not alone. 
  • @cmillar36 you are a brave and loving mother. 
  • This just so hard. Doing ok physically. Although bleeding and cramping more today. I filled out maternity leave paperwork last night broke down while doing it. Broke does while singing twinkle twinkle little star to my 3 year old. Alls I picture is my angel in the sky. I know this will get easier but right now it's awful. It's feels impossible to just put one foot in front of the other right now. I'm missing my dads birthday today as I can't be around my pregnant sister.
  • Top of the list for idiotic things to say to someone who just lost their baby?

    told my stepmom this morning. Not coming to my dads party tonight. My sister will be there. She's due anyday now. Get over it you will have to do it eventually. Do it now it will be easier. Ya actually no it won't. How the hell would you know anyways?? You've never dealt with this kind of heartbreak.

    I was absolutely shocked this came from her. Have a little heart it's been 2 days since I lost a big part of me.
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