This is kind of what I meant

I was talking to a friend of mine on the phone yesterday. She is pregnant after many IVF’s. She was initially pregnant with twins but lost one very early. She is 19 weeks now and her doctor has put her on bed rest for the last month or so due to some slight spotting.

 

I told that I was glad she was taking it easy and she replied that she just wanted to get to 26 weeks, because that was when the baby would be ok, and that after 26 weeks she would go back to work.

 

For a split second I was stunned into silence. What should I say? Should I say to her “No! 26 weeks is too early, not all babies who are born at 26 weeks are ok, in fact some babies die. The majority do survive, and are ok, but not all. Ask me, I know., Ben was born at 26 weeks and he died”. I could have said that. It didn’t happen to a friend of a friend, it wasn’t a hypothetical situation, it happened to me. It is very personal. And this is a friend of mine; I want her to be careful, very careful. 

 

But what purpose would that have served? It would have completely freaked her out, made her paranoid and make her feel guilty and terrible for saying that or for potentially making me sad.

 

Instead I said to her “yes, 26 weeks is a big milestone, but it is still not a guarantee; not all babies do survive. 28 weeks is better, 30 weeks is even better, in fact it is very important that you go for as long as you can go, and so I strongly suggest you stay on bed rest for as long as you can”.

 

I didn’t mention Ben. I don’t want her to carry that in her conscious at this time. And yes, she knows about Ben, but she obviously has either not thought about him, or doesn’t know exactly when he was born.

 

I understand why some people might want to mention it though. When I hear people say; and they say it often; “I just want to get to 26 weeks”, a stab goes through my heart, every time. Because I thought that too. And yes, most babies do survive. Just not mine. Ben was the unlucky 10%. But I don’t mention it.  

 

I honestly don’t think it adds any value to scare people with my story, or make them feel bad or sad for me. I am able to carry across the message without mentioning my worst case scenario; my tragic story.

 

This is what I meant. Does this make sense?

 

Comments

[Kalin]

I don't know what I would do. I think it would be very hard NOT to remind her of Ben, just because it's probably what can screaming to the forefront of your mind immediately. I hope all goes well for her though. :)

[andrea]

Yes it makes sense and I think you did the best thing by reminding her that the longer a baby can stay put the better rather than making her feel any more scared.

[Jen]

I think you handled things beautifully. You let her know that something bad could happen without upsetting her unduly. It is always hard when faced with that scenario, but I truely believe that the important thing is how the message is delivered and the way you did it shows your sensitivity and compassion. If I was your friend and in that situation,I would want to know that my presumption of a 26 week pregnancy always ending well could be wrong. After all that trying and finally falling pregnant, I would want to have all the info I could get for every possible scenario, so that I could prevent a possible tragedy.

[Scout]

I don't know how you could have not said anything, but I'm also stunned that she thinks that after 26 weeks everything is ok. Maybe she's trying to take her mind off of the circumstance she's in?

[Izabela]

It makes sense and you've said it perfectly.

[Kerry]

Oooooh I don't know Tertia ... I think that a little bit of a jolt could have made her rethink the situation. I'm not sure how anyone could get the idea that a baby born at 26 weeks will be 'fine' ... merely being alive isn't the only concern ... there's cerebral palsy and a whole range of defects possible from such an early birth. I've known of very few born that kind of early who are fortunate enough to be completely problem free.

I think I would have reminded her about your Ben. At least if she knows prior to making her '26 week' decision, then if the worst case scenario happens to her too (and I certainly hope it doesn't), she will not have reason to ask you 'Why didn't you say anything?'

[Kim]

I don't think it would be a good idea to tell her about your experience because like you say the odds of that are fairly low even though still there. Telling her would not give her somethng she could do to stop it happening if it were going to and only make her stress out - which could be stress for nothing if everything turns out O.K. I remember once I asked you for some advice regarding the cervix cos I was pregnant at the time and my cervix went down to 2cm at 28 weeks. I asked about this and bed rest and you informed me that a shortened cervix does put you at risk for PTL and bed rest doesn't prevent PTL if it is going to happen and that had happened to you twice. Thing is - that advice wasn't very reassuring even though based on your experience and the facts I suppose. In the end I went to term and would have been overdue if I didn't have a caesarian. I guess there are plenty of people who don't have problems in the end too and probably more than those who do so. I imagine though if someone brings up a topic of which you have experience it is hard not to share it or their concerns if they are also similar to ones of your own. I am sure that the women who said about 26 weeks being a good point to feel relaxed is that she sees it as being her aim in the present and seems more achieveable than 30 weeks etc. I doubt that at 26 weeks she would get up and do silly things - probably just aim for another goal. I guess her saying 26 weeks is cos she is hoping to feel a little relief and hope in her own mind about the situation and she sees 26 weeks as not too far away and possibly achievable. I think as long as you're not telling someone to do something that could in the end be harmful then why tell them the worst case. Encourage them to do the things that you know are the right things to do in that situation and then withold the rest and let whatever id going to happen to them happen.

[Ann]

Wow - I am a NICU nurse, and you are completely correct - 26 weeks is TOO EARLY; it is a milestone, but no guarantee. Frankly, whenever I get called to a delivery that is under 30 weeks, I get scared. Not panicky scared, and yes, I'm *much* more scared for a 24 weeker, but 26 weeks is not a "sit-back-and-breathe-a-sigh-of-relief" moment, really. I think you said it well.

On the other hand, bedrest is really something doctors tell women to do when they don't know *what* to do - I don't believe there are any studies that definitively prove bedrest does anything to protect a threatened pregnancy. Being on your feet mildly alters blood flow to the placenta, but it's far from clear whether or not it's an important factor in most premature births, preeclampsia, etc.

What is very well documented is how bedrest drives women insane, increases the chances of postpartum depression and so on and so forth. It does provide the comforting feeling that you have a plan to protect the baby and are actively "doing something". But it's not clear that your friend wouldn't be better off going to work and working at her computer from a reclining chair, for example, rather than staying in bed.

I don't know the details of her situation, of course. But generally speaking, bedrest is even less of a guarantee that 26 weeks is.

[blackbird]

I think you did the right thing under the circumstances...
hopefully she will go to 26, 28...or even 30.

[shari]

you made absolute, perfect sense... I so admire how you write and get your thoughts across - can't wait to read your book...what's up w/your U.S. distributor anyway? Good luck w/your dinner party :)

[mpatters]

I'm glad you wrote this. It made me realize that sometimes when faced with people's naive or uninformed optimism, I want to correct them. This reminds me how ungraceful that impulse is. Your response was gentle and true, without being shocking and disturbing.

[Nancy]

Oh my god, yes, give people the information in cases like this! I find it so wierd that our western society has so many taboos over discussing reality like this. Her baby might die, and has a hugely raised possibility of irreversible damage to various body systems if born this early. I think she'd rather get the info ahead of time, even if it made her uncomfortable or even miffed, rather than do the research later and find out once it's too late to have tried anything and to always blame herself.

Even if someone drops you as a friend (it's happened to me!), if they are doing something major that might result in death, permanent injury, or even spending their life savings/going into huge debt on something that they're convinced will work when all evidence says it probably won't, I think it's important to give them an "alternate viewpoint". It just seems to me to be the only ethical thing to do.

[Ute]

Gee, I'm not sure I could have kept my mouth shut about your son. Not at all.

[Suzie-Q.]

I totally disagree. FWIW i think that woman needs to get a reality slap. Those of us who have experienced preemie deliveries and all the problems that are attendant have a responsibility to that unborn baby to inform the mom of the potential dangers. We all thought 26 weeks would "good enough", but, even with my twins making it to 34 weeks there were problems and a stint in the NICU. I would have been much more graphic so that she would have a clear picture of the potential risks of delivering so early.
Perhaps things stick with you, Tertia, for an extra long time and they don't with her. I know i would rather hear the truth, and, i would figure out pretty quickly that the information being given is meant to educate, not upset me. I would process, apply and let it go.
I think most thinking people are like that. I think if you lose a friend because you are being one then the friendship just wasn't meant to be anyway.

[ktjrdn]

I think you did exactly the right thing. This woman has a lot to be worried about. You gently reminded her that she's making some erroneous assumptions. There was no need for you to scare her or to make her feel guilty over forgetting your situation at this point in her life. She's already got enough on her plate. People rarely remember due dates when they aren't their own, so it's likely she doesn't know exactly when Ben was born.

[Lauren]

Tertia, You did the right thing. As a mom of 26 weekers that survived I'm amazed that people think it is the norm. It isn't and I wouldn't think anyone would want a baby in NICU for 3 months. A living baby is better than a dead one but sometimes they have so many more issues like what one poster mentioned.

Like the other poster I'm sure she'll be careful but I who've lost twins before at 18 weeks thought 26 weeks was safe and maybe I could have been even more cautious once I reached viability. Mabye more bedrest would have postponed my PTL another week or two avoiding the open heart surgery my twins went through.

However I seem to be the exception. Most women do go to term and I believe that most don't need to know my scary story. They just need to know that they need to keep that baby inside them as long as they can and use caution if they are at risk for PTL.

I have a cyber friend who just lost her baby at 23.5 weeks. She would have loved to get to 26 weeks. Her baby might have still been alive in a hospital right now but he isn't as he was born too early. I often think how lucky I am that I did make it to almost 26 weeks and had those extra days to give them.

[Orange]

I think you said the right thing.

I have a friend whose daughter was a 26-weeker, and she's healthy now. But she was in the NICU for 4 months, went home with an oxygen tank, and has some ongoing behavior/attention issues that might be related to her prematurity. My son was a 31-weeker, and he has similar issues that I suspect are related to his brain being yoinked out of the womb too soon. (No evidence to back this up, of course.)

Maybe your friend could use a *little* scaring? Yes, I retract my initial response. Remind her that statistical odds that a baby would survive aren't the same as a 100% healthy baby. If she thinks bedrest and time off work is stressful, she should try a stint in the NICU. Really! It's so much fun!

[Judy]

I think the way you handled it was right on - you used what you knew about that situation to let her know that 26 weeks is not the end-all of complications. I think you used the knowledge that you had in a very positive way. Okay, yeah, make it to 26 weeks, but 30 weeks is better, so is 34, and hey, why not strive for the full 38-40?

You rock, girl. To be able to think like that on a lark is GREAT.

[DD]

That's a long ways off. Her doctor will handle it the best, I'm sure. No need to scare her, as you said, or make her paranoid. You just need to nod your head empathetically and ask if there's anything you can bring her while on bed rest. The future is up to her and her physician.

[Sue]

You are a wise woman and a good friend.

[Summer]

Remind your friend about Ben if you must, if it looks like she might start taking unnecessary risks after 26 weeks. The best thing you can do, in my opinion, is just talk to her often and keep checking that she's not planning to do anything stupid. In any case, she could use your support and friendship while she's on bedrest; it's such a boring, lonely, demoralizing thing to have to go through, as you well know. If she starts talking about making marathon shopping trips or hanging shelves in the nursery after she passes 26 weeks, by all means talk about Ben, and remind her how important it is to follow her doctor's advice.

She's lucky to have a friend like you who is so understanding and sensitive.

[Brandy]

Just from my experience, I was sitting in the hospital hoping and praying I made it to 26 weeks. But I only made it to 22 weeks and 6 days. But if I had a friend that had a child at 26 weeks, I would want to know about the situation.

About bedrest. I know there are not many studies done showing that it really helps. But it is better than walking two flights of steps when you are pg with triplets everyday to get to work. It is better because you can watch your diet instead of eating out of the vending machines at work or being stressed out at work or getting into a car wreck or falling down, etc... I truly believe that being on bedrest help two of my boys make it to 22 weeks and 6 days (and they are alive).

[liz]

I think you did the right thing. If, however, you ever hear her mention it again, you could say gently:

"I didn't really want to bring this up, but you seem to continue to think 26 would be fine...and Ben was born at 26 weeks."

And then leave it at that.

[Becky]

Tertia,

I have never commented on your blog, but read it every day. I found it after I lost my son at 38 wks and I read every bit of your story, I couldn't stop.

I agree with you that there is only so much you should tell someone who is going through a similar situation, especially when they are coming to you for an ear rather than for advice. I don't know how many times I have heard "after 36 wks the baby will be fine". I cringe every time because I know that statement is not always true because it happened to me, but I always keep my mouth closed. I know the majority of all babies that make it that far are safe, I was the exception.

Thanks, Tertia, for your wonderful blog! I can't even begin to tell you how much it meant to me last year and how much it means to me know.

Becky

[Shannon]

I'm mom to a 28-weeker who had a grade 4 IVH and now has cerebral palsy. I would have had a terribly difficult time not saying something. There are no guarantees at ANY gestational age, especially not for a 26-weeker.