Advice needed... re NILMDTS

JennyTom

So, as you all know, we found out at our 20 week appt that our little Ella had no heartbeat.  Both my ob office and my grief counselor suggested contacting NILMDTS to have a photographer come and take pictures when we delivered her.  I had planned on it anyway, I was familiar with their organization from other people who had lost little ones.

So, the day after we found out, my dh called the area organizer (per NILMDTS's instructions).  The photographer told my sweet dh that they don't normally take pictures for a loss under 25 weeks and to google pics of a 20 week old baby and call him back if we decided we still wanted pics taken.

Needless to say, my dh was very upset.  The contact person was very nice.. he wasn't rude or short.  After reading several stories of people who have had earlier losses and had them come, it breaks my heart that they didn't help us.  And even more, that we have a handful of pics that the hospital took of Ella that look like, well, medical photos and two pics of the two of us with Ella.

I really want to write the contact person and tell him how disappointed I am in him.  Am I overreacting?

Cow-girl

I cant believe that they wouldnt do pictures for you.  Thats terrible.  The hospital took pics for us (everything happened so fast) and my pastor also took some pictures of her for us.  I treasure the photos of her, although I havent looked at them in awhile, I am glad that I have them. 

Im so sorry they didnt help you.  I would definitely send them a letter.  (((hugs)))

DavezWife

I am terribly sorry for your loss.

I am working with NILM, in hopes that I can become a photographer for them. I in NO WAY want to speak for them (please understand that) because I am NOT with them yet, and do not understand their "ways" yet, but from what I gather...

where to draw the line? is the question...

pre-term infants are often very difficult to look at, and with the exception of in the eyes of a loving parent, the images may be disturbing to many. I can think of times on the Nest, Bump, whatever... that women have posted piks of their LO when they had passed, and it was very disturbing to others to see. They did NOT see it as beautiful. So where do you draw the line at 15 weeks, 22 weeks? 23.3 week? where? what about a 23 weeker that looks older, but a 28 weeker that died at 22 weeks? it's very discretionary. I am GUESSING that they are simply trying to use their resources (all photographers are volunteers) to the best of their abilities - if they sent them out on every single request, perhaps there would be no volunteers left. They have to draw the line somewhere. Again, this is only my speculation.

I have heard of NILM taking piks of younger babies, I think it's just a case by case basis. Should you write a letter? Of course. If it will make you feel better. But please recognize you are hurting, and this will not bring your child back. Perhaps you could write the letter and just sit on it for a while. Send it later, after you've had a chance to edit it, think about it. Make sure the right point goes across? I do that many a time, I'm a passionate person ;-)

On a whole other note... you say you have some piks that look too clinical... I'm working on my photoshop skills, and they have many filters and "tricks" that make some really harsh B&W piks looks pretty and gaussy and soft. Perhaps if you would like, you can work with those a bit, or if you would like, I would honored to help with you with them, making them a bit more acceptable to look at, should you wish. It's a very personal thing to share something like that, so please don't feel you have to take me up on my offer, but it's there if you would like. I can be emailed at david_and_tracie  at yahoo      - let's talk 1st before you send them, if you don't mind.

 Again, very very sorry for your loss. My heart hurts for your family.

Mrs.Mugsie

I am sorry for your loss.  I don't share the same experience but I don't think you are overreacting.  Maybe a letter to the contact person explaining why you think it is important for them to do pictures earlier than 25 weeks will help couples in the future.   I am so sorry you didn't get the pictures you should have gotten.

3ltlones

I think that if I were you that I would send a letter or call the organization.  But, I don't think that I would contact the parent coordinator, instead I think that I would talk to someone above that and let them know your concern of your very real loss.  I am so sorry that they wouldn't take the pictures for you.  Hugs, let us know what you decide to do.

JennyTom

Thanks everyone...

Just to clarify.. he didn't say he wouldn't send a photographer.  But my dh was so put off by him and I guess put his trust in him that under 25 weeks it wouldn't be appropriate.  And the suggestion to google pics... it was just so upsetting, the entire conversation, that we didn't pursue it.  That was more what I was upset by.. here my husband is calling, grief stricken, and the guy was like, well, we don't normally do that, and google a pic.  Do you see what I mean?  That alone was enough for us not to go further.  If we had more time, if we hadn't been so upset, maybe we would have called back.  But that was enough to push us off and that is what upsets me so much.  He should have been like, absolutely.. here is how I can help you.  That's what they are there for.  You know?  I have been sitting on this for nearly 7 weeks now.  And I keep trying to let it go...

JennyTom

 I am GUESSING that they are simply trying to use their resources (all photographers are volunteers) to the best of their abilities - if they sent them out on every single request, perhaps there would be no volunteers left. They have to draw the line somewhere. Again, this is only my speculation.

That breaks my heart.  I would think that the purpose of the organization is not to make that kind of determination... In my opinion, if you are delivering the baby, you should have someone go and photograph the birth.  Obviously we wouldn't have expected someone to come at say 6 weeks.  But by the virtue of us having to go in the hospital and deliver, that says something, right? 

BTW..thank you for the offer to help with the pictures we do have.  Unfortunately, we don't have them on a disc.  The hospital took them and developed them for us and gave them to us when I was discharged.  Here is one of the pics I do have.. you can see how beautiful she was.

DavezWife

I think a letter should go to that particular person, and rather than point out his flaws, I would give him some specific verbage, from a mother who's been there, so use next time he's faced with a call like yours. Say things like "May I suggest phrases like 'blah blah blah' and "blah blah" and "blah blah" are helpful to a mother about to loose a child.

He can learn from you, but he won't listen if he feels attacked, that's just human nature, and heck, he's a man ;-)

 

I think the picture is beautiful. Again, very sorry.

vkbaby09

I'm so sorry for your loss and that NILMDTS reacted that way to you.  I was pretty surprised when I saw that their website said that they really only come out if the baby is past 25 weeks, especially since babies can possibly survive past 23 weeks!  It also would make more sense to have the cut-off at 20 weeks because that's the cut-off for when you have to make arrangements for the baby's body and fill out death and birth certificates (if applicable and at least in my state).  I realize now how I'm even more lucky that they came out for us.  We really had nothing to do with it though - our nurses and hospital chaplain arranged everything with them and it's a shame they couldn't do the same for you.  Again I'm so sorry. 

I think that it's a tough situation that the guy was in, however.  I like what the pp said about gently telling him for future reference what would have made your experience better and to write a letter, but hold on to it for a little while longer or have some other ppl read it.  I am so sorry you weren't able to take advantage of their services. 

On another note, there are some things I think about with Colin and Ian's birth that I wish were different.  Like I wish I had sang to them and put them up against my chest (especially while Colin was still alive) and taken a lot more pictures and kissed them more.  What I try to think about when I'm feeling regretful is about what I did get to do and what I do have.  I feel very lucky to have experienced their birth and seen them and held them and am able to look at and cherish the pictures I do have.  No matter what way we look at things though, it's still going to be a horrible, life-changing thing that we went through.  I wouldn't wish losing a child on my worst enemy.  Take care.