Late Term and Child Loss
alanna3622
member
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Intro. Not sure how to do this
alanna3622
member
Our baby has passed away at 33 weeks 3 days. We go in tomorrow to be induced.
I am not thinking very clearly right now. I keep worrying that the hospital staff will want to know his name. We have openly shared his name and it isn't a secret. But I can't imagine saying it out loud.
I guess the next 24-48 hours will be awful. And then more awfulness.
I would like to have my baby back.
I don't know what else to say. I don't know how to do this. How do people get through this?
I am not thinking very clearly right now. I keep worrying that the hospital staff will want to know his name. We have openly shared his name and it isn't a secret. But I can't imagine saying it out loud.
I guess the next 24-48 hours will be awful. And then more awfulness.
I would like to have my baby back.
I don't know what else to say. I don't know how to do this. How do people get through this?
Re: Intro. Not sure how to do this
I hope you're able to find some level of peace in your son's birth too. The grief that comes after can be overwhelming, find your support system, that can be family, friends, counselors, and for me especially, communities like this of women who share similar experiences.
Above all else, be gentle with yourself and your SO. So many hugs to you and your family.
The best thing I can tell you is to go in with an open mind. I was ready for it to be terrible but we left the hospital and talked about all of the blessings that came from our loss on the way hone. Don't get me wrong it was not fun or enjoyable. The hospital staff did a great job helping us get through the process.
Hold your baby, take pictures for your personal use, get foot prints, sing, cry, yell, then cry some more but talk about it with each other (and us). Please be patient with yourself.
I wish you the best of luck and an easy delivery. (HUG)
P.S. ask for Popsicles
This is just so sad. It is really starting to sink in now, that we have lost him forever.
I want to not be so sad all the time. I want to do things and be normal, but I am exhausted and find myself sobbing at random times and at the end of the night.
What got you through your losses? Do you have a recipe for how to survive?
No real recipe. Just make it through the days. The first 3 weeks, I just sat on the couch, watched the same movie (The Goonies) over and over, and just waited until bedtime. It helped every day to just try to do one thing. Just one thing. It could be taking a shower, heating a meal, doing a load of laundry, etc.
And just let yourself cry. Hug your SO and just be. I really just relied on the phrase "you just keep living until you are alive again."
@msunshine123 thank you as well. I know this board isn't very active but to have you and @MamaBish reply has helped so much.
We received some very disturbing information last night but I haven't gotten a handle on it yet. We are just reeling. It changes everything and yet nothing.
Ugh. Tomorrow will be a better day right? Right.
She also told us that the information that should have alerted us to the fact that his Trisomy 18 was there to be discovered at 13 weeks and at 18 weeks into my pregnancy. This was as a result of 2 known errors. First, if one office (GP) had faxed a piece of paper to the other office (OB), she would have known that the measurement of his nuchal fold was at 3.1mm.
Second, the anatomy scan specifically found that his only abnormality was 2 choroid plexus cysts. My OB, relying on the findings of the scan, told me at the time that it was a marker for the trisomy disorders but that trisomy babies were so abnormal that it is virtually impossible for a trisomy baby to present with only a single marker (as she was unaware of the abnormal nuchal fold measurement). Healthy babies have choroid plexus cysts, which disappear with time as the brain develops and fills in. Therefore she recommended that I not get additional invasive testing (CVS or amnio). However, my OB is now questioning the anatomy scan and is sending the images for expert review. Why did the radiographer miss the heart defects? Do the other ultrasound images show classic markers for Trisomy?
There is a potential third issue I have questions about. My OB was under the impression that the nuchal fold test was not done at all, and so she sent me for the MaterniT21 (I think) test. But I never heard back on the results of that test. Her voicemail advises that patients are not informed of normal test results and we should not call to inquire. So why didn't the test show the Trisomy?
It changes everything to know that we could have KNOWN he had no hope of life outside my body. We would not have hoped and dreamed and planned for his arrival. We would not have put together his nursery with the naivete that in retrospect is humiliating. I loathe the memory of the oblivious and naive person that I was when I was folding those goddamned little onesies. I would have been spared the last 8 days of self blame and guilt and agonizing over what I ate, and whether I took enough Tylenol for my cold. I would have had the choice to terminate the pregnancy. Did he suffer before he died??? When he was kicking, was he actually struggling and in distress because his little body didn't work???
At the same time, this changes nothing. He was/is our son, who is gone forever. I am a mom who cannot feed and love and care for her baby, and I'm going to have to find a way to deal with that.
So sorry for your loss and for the medical mishaps you are now discovering. At the very least now you can be 100% sure that you couldn't have done anything differently (even if the doctors should have). I don't think it's naive at all to have been preparing for the baby's arrival. If the medical experts didn't pick up on anything, there is no way you could have.
You mentioned not hearing back about the materniT21 test. I believe that test only looks at the 21st chromosome (checking for Downs). Since your son had Trisomy18, his 21st chromosome pair may have been normal which is why they didn't call you. Total speculation on my part.
Anyway, I'm sorry not to have any concrete advice to give, but wanted to offer a little support.
TTC since January 2015
3/15/2015 BFP!
4/15/2015 MMC
2/25/2016 BFP! Hoping for the best!
A perinatologist has now reviewed the ultrasound images and has confirmed that the technician and radiologist did not see what was there to be seen. She has notified her dept head and has begun a quality review process with a view to making a finding against the radiologist/clinic and potentially revoking their credentials to do Level II scans. This will take months, maybe a year or more.
There were lots of other positive things in that appt, but right now all I can think of is what she told me about the autopsy. His poor little body was so disordered. His stomach and diaphragm were basically in 2 separate parts. He lived and then died in the worst possible way I can think of. I can't bear it, knowing this. How are we supposed to bear this?
I have to just keep going for now.
I hate thinking about how our baby died too, slowly and probably painfully. I know it's impossible, but I try not to think about it. It doesn't get me anywhere.
I am really struggling with how I remember my pregnancy. But I guess it wasn't unreasonable to think and expect that everything was going to be okay. Who wouldn't think that at 8 months?
I wish I had more to say other than you and your family are in my thoughts and prayers. I'm so sorry that this happened to you--it's completely unfair and awful.
The blood test -- pretty sure it was MaterniT -- that I did was sent for analysis but declined due to gestational age. My OB did let me know that the day of our appt, which was the first time I had seen her, was the last possible day for this test, so I trust that information. The cost for the test and all medical appts are covered in Canada for which I am thankful. (She did recommend a private test that is not covered under regular healthcare that can be done as early as 10 weeks gestation, for any possible future pregnancy, for $500, but that too is not diagnostic.) So my OB's office did not drop the ball there.
I spent last night and all day today in a total fury/horrified/devastated. I was relieved when I found out it was not my fault. But to have it confirmed that his Trisomy was there to be seen, and to find out what he endured -- that relief is more than gone. There is just lots and lots of anger now. No way will we be letting this go. I am going to file a regulatory complaint to make sure that I have a legal right to be advised of the outcome of an investigation and we will be filing a lawsuit. That radiologist needs to look me and my husband in the face and give us an answer as to how and why he let me carry my sweet hopeless son to the point where he could and did experience what he did.
On here. It will hurt so badly and will hurt for a long time. I wish you didn't have to go through this...I have no advice, just so so sad for you and your family. Families are eternal. So sorry Hun.
My postpartum checkup is set for March 1. I don't know if I can do it.
Feeling so low. It has been 1 5 months now. I was hoping to move past what happened.
****Rainbow mentioned****
Being told it's ok to try again is frightening - there are so many unknowns. Be patient and kind to yourself.
Although my son's death was from different causes I can appreciate the pain of being told the reason was "random." I can honestly say statistics mean nothing to me because my son's death was considered a statistic/ rare event.
Some good advice I was given -"you're ready to try again when your desire for another child outweighs your fear of loosing another child."
Choosing to try again is very personal and everyone has their own reasons for when that time is right for them. Having been through the loss of my son followed by my daughter's birth I can say pregnancy after a loss is challenging. You need to prepare yourself and to surround yourself with a lot of support.
@msunshine123 it helps to share that with you. I understand your son died from a cord accident. I am so sorry. That is so very random. I can only imagine the difficulty involved with trying to grapple with that, and then experiencing PGAL.
My counsellor says that all journeys end in death, and so I shouldn't blame myself for living life by conceiving John in the first place, or by trusting my doctors. And that one of the great illusions is that the world is safe and predictable. The illusion that our world's systems protect what is valuable and important, when in reality these systems leak badly.
I struggle a lot with how I feel about John Allan. The niceties which bring comfort to others just don't work with me. I mean, he isn't an angel, and he wasn't born sleeping. He did not pass away peacefully, given how the Trisomy affected his body and that babies feel pain in third tri -- he was a real person and in this situation, that was a terrible terrible thing. He was also deformed. And his skin was peeling off. He had died days ago inside of me. How can a person deal with that? I see him all the time. I think of what he was feeling before his body could not endure any more and finally stopped working. It is pure horror. I want to not think of that anymore, but I don't know how to stop.
My counsellor has been trying to talk about how I need to grieve the idea of my son and not focus on the reality. I don't understand what he means. I would like to do that, though, if it could bring peace. Times are not the greatest financially these days though and I can only afford one appointment a month at the most.
Thank you for helping. Our circumstances are different but at least we don't have to feel entirely alone. So thankful for this board.