Pregnancy And Infant Loss Awareness Week is coming up, I am a father who lost a child at 28 weeks, AMA

21 days ago, I gave birth to my son at 39 weeks. We had 11 hours with him before he passed. He had Osteogenesis Imperfecta Type II, the lethal variant of what is better known as Brittle Bone disease.

My husband doesn’t show a whole lot of emotion, but he is absolutely wrecked by this. What helped you move on? How can I help him? He’s been my rock but I feel like I’m slowly wearing him down with my own sadness.

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My DMS are always open mate. Just drop me a message I will be here to listen and chat to you

A close friend of mine and his fiancee just had a miscarriage.

What can I even say? How do you even begin to broach that kind of emotional destruction?

Good question,

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Some people take offense to sorry for your loss, so its very difficult. Definitely don't stop talking to them, they will open up to you if they want too. Just be there, let them know you're thinking of them, don't bring religion into it and don't say well you can always try again or something like that. Just be an awesome friend.

In 2 weeks, it'll be a year since my fiancee miscarried. There's a few things that stand out more than others. The first? The doctors nonchalant attitude about it, and specifically, the "You two are still young, so you should have no trouble trying again." That comment stung. So did the "it all happens for a reason" comments. Bitch, please.

The second, the nurse who came in after. Discussed painkillers and what we could expect in the coming weeks, and then just gave us a hug. No words, just simple understanding. And that moment meant a lot.

Then, how friends rallied around us. They did a fantastic job keeping us distracted. We didn't want to do anything other than sulk, and they did a great job of pulling us out and keeping some semblance of "normal."

Everyone's different, but in my experience, help keeping some level of "normal" really helped. Had a friend pull us out to go to a harvest festival. Had plenty of dinners dropped off and stuff along those lines. Those gestures meant a lot to us.

It's amazing how much the small things help especially trying to keep some sort or normality.

Thank you for sharing

My daughter is a surviving triplet. Her brothers developed TTTS and we ultimately lost them both before 22 weeks. All three were born at 27 weeks.

I feel your pain. My daughter is currently doing very well, but we still think about our boys every day.

When people ask you if you have any children, do you tell them that you have a daughter?

Sorry for the delayed reply.

Understandable you will definitely think about your boys daily. They will never leave your mind. I feel your pain friend and my dm is always open.

I do tell people I have a daughter or mention I'm an angel parent. I am an open book when it comes to talking about lexi. I actually enjoy talking about her. It makes her real.

I don’t normally post, but this is sadly all too relevant. My wife and I just lost our baby girl at 31 weeks into the pregnancy. That was about 3 weeks ago. Its still fresh, and its still weird not doing special things to prepare for her arrival, but we’re trying to keep pressing forward. I know that late in October, when she was due, it will be especially difficult.

How long was it before there was some sense of normalcy regained in the life of you and your wife?

I'm here if you need to talk. My DMS are always open. It's gonna be very hard for the next while. You will be in your own bubble right now. You will understand that I hope?

Normality I'm afraid doesn't come back. Things will change forever. Well that was in my case

My daughter died 1 year and 9 months ago. I thought we would be fine. Our families were supportive, I had experienced grief. I knew the depression would come and eventually go. My wife had never experienced grief. She at first couldnt do anything. I felt if I could get her back to feeling like herself, Id have time to mend on my own. So I went back to work, got into my routine and helped out as much as I could. The more I gave the less she wanted to do. When she went back to work, months later, it wasnt the same. She was very social and everyone knew she was pregnant but no one wanted to share the bad news with her clients or coworkers so it seemed like every day she was asked about our baby. She worked in an industry with a decent amount of headhunting and immediately wanted a fresh start. I explained to her how making big decisions while grieving was often a bad idea. Yet I completely understood wanting to avoid having to see the people that knew and didnt know. A fresh start maybe for the best? So I supported it.

We tried again and immediately conceived but only a month in, the pregnancy failed. She had to force the miscarriage. She told me she couldnt do it any more. I did what I could but at this point my depression had swallowed me. I couldnt see, she meant me.

A few months later, she confesses a moment with the new boss that crossed the line, my depression was no longer a little problem but had turned me into someone she was not in love with, and that she did not see kids in her future. We tried couples counseling for a month before she moved out.

We've been divorced for months now. Im dating again. I feel the depression more in check (couples counseler became my own therapist and literally a life saver). Im pushing myself to do new things. Some of them suck, but some arent so bad.

I know theres no sense thinking of the different ways it could have gone but I do think the social stigma and just horrible way she returned to work made everything harder on us. I wish people cared enough to say more than sorry, to offer to help and follow through with it. I lost most my friends in the divorce but Im happy to say the ones I still have are the ones that made the effort to see us during the hard times, buy a dinner, take me out for a drink, hear me complain for ridiculous amounts of time about how bad the last star wars movie was (because I was supposed to see it when she was born, saw it after she died, and now for whatever reason have linked the two). So if someone you know has this happen, be there. Make an effort. They will appreciate it later, even if they cant right away.

And if it happens to you. Seek help. The sooner the better and even when things seem alright, keep trying.

For Cadence.

Oh right an ama.. what did you do with the stuff? I still have a box of all the things. I take it out, I cry. I put it back. Then what?

Thank you for sharing. You're in my thoughts.

Erm to answer your question.

Being honest. My wife got nearly everything of hers when we split. I have a couple of baby grows and her original hand and footprints. I cherish them dearly.

You seem like a class act. Sorry for your loss and hope you are doing alright.

Favorite Bleach fight?

Good days and bad days as expected.

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Favourite bleach fight....... Tough one. I think Either Byakuya Vs Ichigo, Or Renji Vs Ichigo in Soul Society, The pure emotion in that fight just gets me every time. How about you?

Man, the soul society arch is one of my favorite seasons of any anime. So good.

Totally agree with you man, Just had EVERY emotion possible and really got you excited for the next episode.

That whole part of the story is amazing man. Anything Sajin Komamura

Good call. I think he quite underrated in the original series. guy was a legend, LOVED his Bankai

How was your treatment by the hospital staff?

I ask because I'm on the board of a foundation that sponsors training programs at a number of hospitals (Johns Hopkins, Weil Cornell, Cambridge, UCSF) where the goal is to train residents to be better at handling these kinds of situations, which are obviously difficult for everyone involved. Unfortunately sometimes the difficulty of the conversations makes it worse for the family suffering (or about to suffer) from the loss.

It's called the Cameron Kravitt foundation: https://www.cameronkravitt.org/. As with any non profit (especially one with our focus) we need all of the help we can get.

It's difficult. If you would ever like someone to come and do a talk or something let me know. It would be an honour and a privilege to do so.

Drop me a pm and we can talk.

Personally though the treatment we had from staff was brilliant. They couldn't have done enough. Yeah A few issues arose which I won't go into details here. But they were minor and easily sorted.

Just want to say I’m so sorry and I hope you are getting help to process it and taking good care of yourself. I know so many people who have lost a child and had healthy children after, if that helps at all. Good luck to you.

I do have a question actually. What is the most helpful thing someone has said to you about it?

Thank you very much.

My ex wife is actually currently pregnant with twins. As much as we aren't together anymore and they obviously aren't mine, I do wish her the best of luck with them going forward. For me, time will come eventually.

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Honestly, nothing has been helpful that has ever been said. Its just nice when people want to talk about her or recognise she was actually real. Like all parents im proud of my child, she didnt breathe on this earth but im proud of her and love her unconditionally.

“Like all parents im proud of my child, she didnt breathe on this earth but im proud of her and love her unconditionally.”

I think that is something that many people miss. My son is real, and even though he was stillborn, for seventeen weeks he was a part of my life. I had the joy (and pain) of holding him after my wife delivered. I got to hold his hand, touch his face, kiss him and tell him I loved him. I still love him. I think a lot of people want to dismiss loss and grief, and miss that aspect. Up until two weeks ago I was the same way.

You will always love him. I remember when my ex was pregnant with lexi. She would react if I sneezed or coughed or talked to her. She knew who her daddy was. So would your son. That time when they are born. It's so sad. But yet so beautiful. The grief is there, but seeing your child and holding them, kissing them. Telling them how much you love them. It breaks your heart but those memories will remain forever. Thank you for sharing

Did the loss influence the divorce or was that completely separate?

We went through a couple miscarriages early on in the pregnancy but nothing compared to what you had to endure. Our hearts literally broke and I'm tearing up looking at that image. My sincere hope for you is that when you hold your future newborn, that some of that pain ceases.

I honestly don't know. The only person who knows that is my ex-wife. She had the affair for 6 months so clearly wasnt happy at home anymore. Thats all down to her.

I recently lost my son in March stillborn at 30 weeks. How do you feel we handle men’s pain regarding this?

I am not discounting the mothers loss here, just asking if we are handling the fathers correctly.

I feel your pain and I'm sending my thoughts to you.

Men seem to get pushed aside a lot. Everyone focuses on the mother's. Which I understand. Though us father's have had a loss too. I recommend any males who have had a loss find a support site daddy's with angels is a good one. Even if just for a while. It helps.

Are yall going to try again?

I am sorry for your loss!!!

We are no longer together, We broke up about 7 months ago now, in short, an 6 month affair was had so we ended it.

she is happy now though, she is actually pregnant with twins with the person she had the affair with. I wish her luck.

Thanks

My wife and I lost our first son at 28 weeks as well, and the only worse scenario than losing him would be losing him and my wife. If you truly feel this way you are a stronger and better person than me. My DMs are always open if you need to talk without judgement.

Thanks man, honestly at the beginning when we broke up, i didn't. But as loss like this shows us, we need to find ways to rebuild our lives. She has rebuilt hers with someone new and now I need to rebuild mine. Don't get me wrong, im not 100%, but I'm getting there.

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My DM's always open too mate if you ever need to chat

Will you ever try having a baby again? I can understand no for an answer, but if yes how do you overcome the fear?

I will try again when I find someone new (and if they want kids obviously). Its going to be difficult to overcome the fear of it happening again. But you have to just take each day as it comes I guess.

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Thank you for your comment.

How are you holding up right now?

I still have good days and bad days, its to be expected.

Hey man just want to say kudos to you for doing this. Can't be easy, my wife and I have lost 4. I'll say as a guy I feel its tough sometimes to be open about this stuff...so seriously awesome that you can be. The only question I have would be on the down days/moments how do you pull yourself out of it? I still struggle at times with this myself. Guess one more, did you guys ever get counseling?

Thanks man. I've been thinking of doing a vlog on YouTube too. This needs to be talked about especially from a father's perspective. Wow though you must be awesome dude. I struggle with one never mind four. Life is too cruel.

Some times I can't pull myself out of the dark days. It's really difficult. Things that do help though are thinking and talking about her. Writing I find is very therapeutic. Each to their own though. You need to find your own coping mechanism. If you ever want to chat though please drop me a dm.

We did get therapy. Was right next to the scan department of the hospital so it was great then as you leave you see all the mother's waiting for scans and it just breaks you again. So in a way. It was pointless. These are the things that need to change. There is no way they should be next to each other in the same hospital.

Heart goes out to you. Have had close friends go through similar struggles and know how hard it is to come out the other side.

Can you recommend some things that I can do that make a difference to besides kind words and listening?

Not really, thats the best thing you can honestly do. Let them talk, let them mention their child, just be as understanding as possible. The odd hug helps.

Do you find it disrespectful when people are excited about their current pregnancies around you and your wife?

Not at all. Everyone has the right to be excited about their pregnancy. I always say good luck now instead of congratulations. But that's cos I know things can go wrong.

My ex wife flaunts her pregnancy on Facebook knowing were still friends. That one hurts. But she has the right

I'm glad you're doing this OP. I am a diagnostic medical ultrasound technologist that does plenty of pelvic and OB ultrasounds and people don't realize the amount of patients I see that have a different parity and gravidity. (Number of pregnancies vs number of live deliveries)

Definitely important to bring attention to the fact miscarriages happen on a larger scale than most people think. The topic becomes taboo and people don't talk about it and I'm sure plenty of women feel worse than they should about miscarrying. It's definitely a fairly common thing to happen.

That being said, 28 weeks is very late to see a pregnancy terminate and typically we don't see pregnancies miscarry so far along, so my condolences to you.

I suppose my question to you is more ultrasound related. How much prenatal care did you receive as far as ultrasounds go? Where I work it can be typical to get a 1st trimester ultrasound (before 14 weeks) or two depending on what is seen. After that a nuchal fold ultrasound can possibly be done at around 12 to 13 weeks depending on if your OBGYN is worried about chromosomal anomalies. Then you get your complete anatomical ultrasound at around 18 to 20 weeks. After that, ultrasounds seem to basically be ordered as needed.

So. In the UK we get scans at 12 weeks and then 20 weeks. We had those and it was at 20 weeks the anomaly was found. We got scans every week from then. We got our last scan at 27 weeks and she died at 28.

If you ever see an umbilical vein varix and it grows. Please don't dismiss it like my doctor did.

Interesting. I always check cord insertion at the 20 week ultrasound, but I haven't seen an umbilical vein varix in my career yet. Looked up some images of it after you mentioned it. It's definitely something the average tech would notice even if they might not know the medical terminology for it.

It's apparently a very rare condition. We were very unfortunate to have it. Apparently it was Whartons jelly deficiency that killed her. Maybe you can help me actually. If you know anything about the other one

My wife and I lost our son at 17 weeks on 9/11 this year. As if that day wasn’t shitty enough as it is already.

My experience is that most people are wonderful about being supportive of her, she has multiple people checking in on her, reaching out to her, providing emotional support, and the like. Everyone’s interactions with me, however, are along the lines of “you’re doing so great being there for her through this” with only two people reaching out to me specifically about me and my emotions in this process. Everyone else that has reached out has asked about her only (90%) or asking about me was an afterthought (10%) or at the end of the conversation with “you’re doing ok, right?”

We’re your experiences similar, and were you able to find resources specifically for the partner of the birth parent? Most of the things I am finding are geared towards the woman’s experience and the challenges that the birth parent faces, with very little help available for the partners. Also if you have links to resources on the national (US) or state/local (Texas/Dallas area) levels, that would be very helpful.

I have found that my two close female friends have been wonderful when I opened up to them, and yoga has been great in letting emotions out. I’m doing ok, but we’ve been out of state with her family and are headed back home now. I’m concerned about dealing with things when I go back to work and through the coming weeks and months.

Wow so right now it's going to be very raw for you. So first off I'm here if you need me. Just send me a DM. We can talk as much or as little as you like.

I did find it was exactly the same. There is no support for father's it's all about the mother. Though there is a group that did help me at the start called daddy's with angels. Look out for them on face book. I left when the founder died but that was my choice. The group is still going and they have a dads only group where you talk about anything and it goes no further.

Work will be difficult but you're already surviving and that's what matters. Each day is a struggle but you're doing it which means you're stronger than you may think. Keep going and remember you're not alone. I for one am here whenever you need me.

What was the initial anomaly? What led your specialists to believe there was nothing to worry about later?

The initial anomoly was an Unblilical Vein Varix. Basically part of the vein in the cord was inflamed. Apparently it was Whartons Jelly Deficiency that killed her, though i am still not sure

Do you talk to her?

Do I talk to my daughter? Yeah I talk to her.

Do I talk to my ex wife? No.

What kind of anomaly did the scan show? Thanks.

It showed an umbilical vein varix which is a very rare disorder apparently.

Wait, were you told that there was no heartbeat and then she was born fine because the Dr needed up. Or was she a stillborn? Sorry if this is insensitive, I was confused by the title. Either way that photo is moving and you are a very loving person for sharing your experience with others.

So. The timeline was, December 15th we found there was no heartbeat. December 20th she was born (I prefer the word) sleeping. She was born at 518 am weighing 2 lb 9oz. She was perfect in every way. Just wish she was alive

Is it the appropriate ama for a joke?

In a previous comment you mentioned that you and your partner are no longer together - Was the loss of your child the main reason for the break up?

I honestly don't know. She had an affair so clearly wasn't happy with something. Maybe it was down to the loss. I'll never know.

Apologies. Being a Geordie mate means something different to what you're thinking. Mate means friend.

My condolences to you and your family with your loss. Do you believe that men are not given equal time for mourning or respected in their time of grieving from society when they face infant loss?

I do believe that. When lexi died. My wife at the time was offered full maternity leave. I had to go back to work 3 weeks later. I got time off for her funeral and other appointments like post mortem results but didn't really get that time to grieve. I must also say though. Where I work they were awesome. I couldn't have asked for better managers. They were really understanding.

Does everything need a week? Do we need to make every depressing thing have an awareness week, just so you can't criticize it?

Not really. But it's there and nothings going to change that. There is also the wave of light that happens all over the world in October 15th. It's a beautiful thing. Maybe think of taking part?

Is that a picture of your deceased child? I was not prepared for that.

It is, it's the only proof I can provide. Beautiful isn't she.

Isn’t the term for this a “miscarriage” ?

Edit- 28 weeks is a miscarriage despite the downvotes. TYL

It's a misscarriage upto a point, When they are 28 weeks its a stillbirth

so is it a baby before it's born, then?

well yeah, you aren't pregnant with a kitten are you?

Having a child seems like an absolute nightmare, with the loss of sleep, loss of freedom, mess, and huge financial burden. Why don't you consider this a convenient out and go on vacation somewhere spectacular instead of wasting time on reddit?

Thank you for your comment.

Ironically. I would love the loss of sleep, freedom, mess etc. Its what you do as a good parent. Im sure it will be worth it.

As for vacations, I will be taking one soon thanks. Plus aren't we both technically wasting time on reddit?