Thursday, February 16, 2012

the inadequacy of words


What a day.

My mom and I were driving to my doctor appointment this morning, talking about various things, when she mentioned a friend of hers who recently found out the baby her daughter is carrying has a condition not compatible with life.

This evening my phone rang as I was finishing B's bath.  It was a friend whose husband is close with someone who just found out their baby has a condition not compatible with life.

The twenty week ultrasound is about so much more than finding out the sex.

My friend asked for advice, what to say, what not to say etc.  I gave her a few bits of advice, but was mostly lost on what to say.  What I wanted to hear may not be what someone else wants to hear.

I suggested contacting Now I Lay Me Down to Sleep.  I recommended the usual grief sites, provided my email address, but I wasn't sure how a birth at twenty-one weeks works.

Do they get to hold their baby if they want to?  I hate to use that word - get - it's their child, but I can't think of a different way to word it.

Does Now I Lay Me Down to Sleep offer pictures for that gestational age?

I recommended bringing a special blanket to wrap the baby in because he or she will be so small.  Are there clothes for babies of that age?

And what did people say to you after you lost your baby, or babies?  What did you want to hear?  What didn't you want to hear?  What helped?  What didn't?

My heart hurts for the families experiencing this.  I hate that anyone has to live through loss like this.

11 comments:

  1. Sometime NILMDTS will do photos of babies that are 21 weeks, but I think it depends on the individual 'chapter' and photographer. I think in the States anything after 20 weeks is considered "not a miscarriage" and therefore probably eligible. Aidan was 23 weeks and they did photos for us.

    I think they would definitely 'get' to hold their baby if they chose to. Some people might not want to, but the choice nowadays is (probably) almost always given. I second the suggestion to bring a special blanket they might want to wrap the baby in, as well as maybe a small stuffed toy. I was so glad Brian had the presence of mind after Aidan died to go down to the store and buy a 'minky'. He got this one:

    http://www.angeldear.net/cuddle/1133_dark_monkey_c.php

    and it's perfect.

    I hate that the 20 weeks ultrasound is referred to by some as the "gender ultrasound". *eye roll*

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  2. Your post brings me back to what I heard after my miscarriage. The hardest thing for me to process was the word 'lost'. I grew up very ADHD, distracted, and at a small school. I had a reputation for 'leaving things and losing things' all over the place. People would find my coat, my pack and tell me, 'you lost this again'. And I'd be embarrassed and try to make it sound like I left it on purpose. So when I miscarried, I felt a lot of shame when I said, "I lost the baby". I felt responsible, as someone who'd carried 4 healthy babies already, I felt I'd messed something up. I began using the word 'void' to myself to describe the feeling of loss and stopped talking to people about it so I wouldn't have to use the word "lost".

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  3. This may or may not be helpful, but Angie Smith (her husband is a Christian musician in the band Selah) wrote a book: I Will Carry You about their journey of having a baby "not compatible with life." I think she lost her little one somewhere around 21-23 weeks? Anyway, it's a wonderful book and may be helpful to the friend, if not to the actual parents.

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  4. A birth at 21weeks.....well I have done that. Labour was painful the eventual birth was quick and not overly painful. My hospital checked with me first to see if I wanted to hold my son after he was born. They let us hold him and love him for quite a while them did the bathing/weighing/prints etc. They had a tiny hat which fit but the booties did not. The also had small quilts. The medical photographers services were offered to us but we also had a family member bring a camera. They hospital really just gave us our options and let us decide what we could handle.

    Every hospital will be different of course but in your acquaintances situation they can plan a bit and bring some items they want to create their memories with.

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  5. I make burial pouches for my local hospital, I make other things too, but the burial pouches are what they ask for most. These are small, and used for tiny babies, because finding clothes that small isn't easy.
    I also make teeny little knitted hats.
    I think most hospitals will have something suitable, but it's a good idea to take a teeny blanket in, a 12" square blanket works well for little ones I believe.

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  6. Hearing about others who are beginning their journey through babyloss is so difficult. It always stirs up lots of hard memories and I feel so sad that someone else has to go through that.

    Yes, they will be able to hold their baby if they want to. Their baby will be small (mine was 9" long). The baby won't be plump and pink but they are precious at that age anyway (mine looked just like his father). Depending on the area, they should be able to get NILMDTS to take photos and I can't encourage searching for a photographer enough. The photos of my son that the nurses took are my most guarded treasure and I love that they took the time to take photos of my baby BUT there are very few photos and the quality is not good (I wish I had known about NILMDTS back then). I heard it is possible for babies delivered at this age to be born living and to live for a little bit of time (mine did not survive delivery).

    There are not clothes small enough for these babies and your suggestion to bring a special blanket (a small one) is lovely! The hospital dressed my son in a tiny knitted hat and small handmade blanket that someone had donated, but the availability of these will really vary.

    Hearing that people were thinking of me and of my baby helped. People sitting with me, providing company while I worked through it all helped (this took a LONG time and several dedicated people). Hearing that I could have another baby did NOT help. Hearing that it was for the best did NOT help.

    (((hugs))) because even just hearing about babyloss is hard

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  7. Your South Salem friend has teeny tiny hats that I can send.

    calvinshats.com

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  8. I will contact you if they would like one. The family is still in shock.

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  9. Thank you for being such a good friend. Yes, you can hold your baby at that age but it depends on what the medical team and the parents decide to do about the delivery. At that point you can still get a D&E but can opt for a birth. They may not know they have that choice so if you know someone close enough to bring it up they should know. As far as I know there are no clothes that small. My mom knitted a hat that was the perfect size and it would have fit a small doll. She tried to make a shirt but it was way too big. NILMDTS will take pictures at that age. Blankets are good and so are very small stuffed animals (think key chain size). I still regret I didn't get anything like that to leave with Aiden.

    As for what to say? There really isn't anything. Tell them how sorry you are, offer to help in whatever way possible, accept the decisions they make without judgement (no one gave me judgement but I told few people how Aiden actually died). Provide food or gift certificates. Check on them for weeks, not days. But the most important - and I'm sure you know this - remember the baby. Put the birth date on your calendar and tell the parents you are thinking of them one month, six months, one year down the road. That is the most painful part - everyone forgets.

    My blog has some links for people that have to make terrible decisions about babies with birth defects. You can share it with whoever you think can use it, that's what it's there for.

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  10. I have some tiny crocheted blankets I can send, if you think they would like to have them. They were made for babies about that size.

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  11. I wasn't told anything and wasn't offered anything. I knew nobody who had been in my place before I lost Nathan. I found out he was gone on a Monday, induced on Tuesday and he was born, after 12 hours of labor, at 2:32am on Wednesday, July 21, 2011. I was in shock and wish so badly that someone had given me more advice and suggestions. I was able to hold him for which I will forever be thankful. He was so tiny but still perfect. I could already see so many of mine, my husband and his big brother's features. (He was 16 weeks, 5 days.) The 30 minutes that I held him were not nearly enough and as I look back, I think of SOOOO many things I would've done different. I'd gladly experience the pain and heartache of that night, if I could do it over... even with the same end result. I didn't take a picture... I was in shock and it felt morbid. NILMDTS wouldn't have worked for us because Nathan was too early in gestation. I think they primarily come out for 25 weeks and older. Some of their photographers will come out for earlier gestations but it varies. I wish someone had told me that there would come a day when I'd want those pictures. I wish they'd said, "Reconsider... think about it. If you take the pictures, you can put them away and never look at them again. When you leave here, there are no do-overs, no second chances. This will be the last time you will ever see your son. One day, when the memories start to fade... you may want those pictures." I wish I'd had "poses" suggested. Even if I'd taken a picture, I wouldn't have thought to place my wedding ring beside him to remember his size or to have his feet between my fingers. All I could think was how morbid it would be to just 'stand over him and snap a picture of his tiny, lifeless body'. I wish I'd taken a tiny blanket, wash cloth or something... anything... to wrap him in. I think I could've had a "better experience" if I'd been given the chance to have him handed to me and only seen his face. I could've then had a chance to let the shock factor slowly wear off and unwrap him as I was ready to. He was about 6 1/2" long and was handed to me completely exposed in a standard, newborn hospital blanket. I still have a hard time (7 months later) thinking of him in the morgue completely exposed on a cold, metal slab... with no blankie or lovie... nothing to say, "I'm loved and wanted and will be so very missed." I can't bring myself to picture the funeral home picking him up. What did they carry him out in? Did they handle him with care, like a baby? I'm sure they did but the thought still creeps in. (I can't even type that without crying.) I could go on and on about the regrets. We've started a memory box donation program with our hospital, in hopes that no parent will ever have to leave the maternity floor with nothing. My thoughts and prayers are with both families that you've mentioned.

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thank you!

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