I need your help to support families

[LionsandBears]

Liv - when I'm ready, I'll come back and tell you what helped after Leo died. We were looked after really well, despite the shock to us and everyone else that he died.

[dory]

Tashy babe - I am pretty sure we've come across each other around the place in BB, but regardless, I am so sorry that your precious beautiful son Leo died. Thinking of you in these very hard times.... but glad that you feel that you were well looked after, it does help. Thinking of you.

[water_lily80]

I have a few more "don'ts" based on my personal experience.....

I had an orderly come into my room just before I was taken to another room after giving birth, and asked where the formaldahyde (sp?) solution was. Of course I knew it was for my baby. That imagery was something I definately did not need. He was oblivious to the fact i was RIGHT THERE!! And that was MY BABY he was about to put in that solution!! So, as others have said, make sure staff know which room the bereaved mums are in.

Also, don't argue with a mum who's just lost a baby (not that I'd think you would as you seem especially caring and thoughtful), but I had a nurse argue with me when I asked for my meds which I knew were due for me. I ended up yelling "Do you know why I'm here ??!!"

I also found it frustrating that the midwives could not give a single clue as to why my baby died, which really confused me at the time. Since then I've learnt of various causes like a cord accident etc, which would have been useful info at the time. I'm not sure maybe midwives aren't allowed to give you that sort of info??

I also didn't like when one particular middie kept on looking for a heartbeat when it was pretty obvious to everyone there wasn't one, another senior middie actually came and told her to stop.

Never having been though anything like this before I wish the middies would have encouraged us to hold & bathe our little man, & spend more time with him. I was so distraught, shocked & frightened I didn't really think that through and how I might need those precious memories of him in the future

The "right" things that the midwives did with me were:

Held my hand through the birth

Give me room on the general ward for my overnight stay, staying on the maternity ward would have been torture

Came and gave me stories of how they had known mums to go to have healthy babies following a loss like mine

Giving me the Sids & kids info & memory booklet with footprints, handprints weight & length


Thankyou so much for taking the time to hear the mums opinions & experiences who have been through this. You must be a wonderful midwife.

[dory]

Waterlily - good point about being asked about being moved to the general ward v's post natal. I am sorry that you had that experience with the wardy and the two middies. In your time of need it doesn't help. And you make such a good point - about being distraught and shocked and frigthened and how at that time, you can't possibly imagine what you might need in the future.

I was given the option as to which ward, and chose post natal, but was told I could change at any time. I chose it because I wanted to be cared for by the middies I knew and not the nurses on the general ward and to be closer to my angels. But I think that was an assumption I made about not being cared for by the middies, I never actually asked. In fact have chosen it twice the post natal ward... although the second time I almost regretted it as the couple in the next room spent most of the night fighting loudly followed by the woman crying hysterically interspersed with the wails of their little one. That was tough ( not just for us it seems) but DH and I got through. But everyone needs are different, you make a good point about being given options.

[Lisa]

I was never given the option to choose a ward. I was basically told that unfortunately I would be on the maternity ward so that the midwives would be looking after me. I was given a room that was sorta away from the other mums but didn't make me feel like an outcast or anything. I was very close to the midwives desk and I had my own room.

I remember when I had my DD2 13 years ago, I was put in a room with 3 other women. 2 had had c-sections and were sleeping and the other mum who was directly opposite to me had birthed a still baby. She just cried so much and she couldn't speak english which made it so hard. I often felt terrible for bonding with my daughter in front of her and since having my own loss, I can only imagine how incredibly heartbreaking it would have been for her to be in a room with 3 crying, healthy babies

[dory]

Lisa .... that poor woman ...I am sad just thinking about how hard it was for her and not speaking English. I sorry that you felt guilty, but I would have too.

[JFH]

My wife and I suffered a second trimester loss this week - while I know this is not the same as a stillbirth I hope some of this may help, based on her experience of the 20 or so people who interacted with her over this time.

Helpful for L was:

- the midwife who made clear eye contact with L
- who gave us clear information in a sensitive way
- who admitted that things were awful for us
- we got placed right at the end of the corridor in a room with a fold-out bed and I was allowed to stay with L 24/7. the ward staff filled the hospital from the opposite end down to us and tried to keep newborns to the other corridor, despite it being a ob/gyn ward.
- extra pillows (small comforts)
- people avoiding patter or rehearsed phrases/sing-song voice. L was really upset by someone who said all the right things, but in a way that showed how unconnected emotionally she was to the situation
- it's okay for you to be upset if you are upset.
- treating a couple as a couple
- being offered something tiny to eat (cheese and crackers)
- being patiently waited for while L tried to respond to questions - she wasn't in a good state to process anything at all.
- being reassured that we couldn't have done anything to prevent it.
- not being put on a general gyn ward, because the doctor thought about things like a fold-out bed & nicer room/privacy, view of trees out the window, as well as having midwives and the right staff around in case of complications.

Distressing for L (and me):

- not being asked for consent for examination/autopsy
- having to phone the hospital to find out if there was a body (eg. we knew bub had been taken away but not where to or what happened & were worried cremation might happen without our consent, or baby treated as medical waste. please, please make sure you know when the cut-off's are for development changes. I'm having to read PD2005_341 right now so I can tell L what someone should've told us while we were in hospital. Worrying that our baby might be treated as medical waste isn't helpful!
- we didn't get seen by a doctor before being discharge, didn't get information on whether L could have a bath (no),
- L having morphine forced on her before she had confirmation that it'd be okay for bub if bub still had a heartbeat.
- L not being given enough morphine because she didn't know that the aim was to make her as comfortable as possible under the circumstances, instead she was in heaps of pain that could've been avoided by more generous dosing.
- Privacy - we lost baby in ER and with a lot of blood around and nothing on the bottom half, it was very distressing for L to have abusive/aggressive guys wandering around shouting and staring and looking at her. Simply closing the curtain every time and being aware that curtains needed to be kept closed was good
- L having me kicked out for a speculum exam - as long as the partner is helpful (emotionally/physically) and isn't going to regret it or faint, having him at the head end can be useful. Saying stuff like "the most important job you can do is to hold the curtain closed" is distressing to the guy.
- Lies - see above. We'd have preferred to hear "I'd like to do this in private, please could you step outside" from the hospital stuff"
- cleaning/meal staff being insensitive, loud etc - having a slab of meat (not properly rested so still bloody) dropped in front of my wife was pretty horrible for her (and nearly caused me to totally lose it). she had no appetite and the smell/look was the worst thing imaginable at that time.
- no privacy before the first scan, being stared at by people who were heavily and joyously pregnant because of the nightgown/drip/crying, staff being loud with questions.
- ultrasound tech being insensitive, obviously no heartbeat but wouldn't say so, baby underdeveloped and wouldn't say so - we just had to suffer in silence looking at the monitor and seeing what he wouldn't tell us, then being given a report with the info in to take to someone else.
- not being actually told we'd lost the baby until 25 minutes after we'd figured it out for ourselves.
- 2nd ultrasound midwives were trying to monitor blood loss so wife wasn't covered, just had pads..she got told to walk to the scanner and would've bled all over the floor - got offered 2 gowns for this and had to explain clearly that that was the issue.
- not being told/set up well with disposal bin for pads and enough stocks, so having to explain again and again that we were having to keep them to monitor blood loss/clotting/product an could someone examine them
- same with toilet, we were told not to flush it until it had been examined but we ended up with an un-flushed toilet for 2 hours waiting for a midwife to decide to deal with it (4 requests), with...well, what you'd probably call products of conception in it. really not what we needed right then.
- being kicked out on thursday morning very abruptly - they made it clear that they needed the bed and L didn't need medical attention so she wasn't welcome (person in charge of the ward) and that her discharge papers were at the front desk. we'd been told a doctor would come and see us to talk about what happened next for us, and the night before were told to stay as long as L needed, that she was grey, had lost a lot of blood and needed to be carefully monitored. I guess that's more of a staff change /handover problem than anything else, but it could've been avoided.
- not told if L could have naproxen/naprosyn/voltaren etc, and being told that she preferred panadeine forte because it had more codeine in it. more than '0' codeine in it just annoyed L as it was a meaningless answer. later we found out the answer was yes, but it needed to be cautious use because it could increase bleeding.
- not having pain relief levels checked. panadeine forte every 6 hours wasn't enough pain relief for L but it'd been arbritarily decided on and she felt like however often she asked she wouldn't get given anything more. coming from a family of nurses, I know that the squeaky wheel gets the oil, but after losing our baby L and I weren't up to being squeaky.

sorry if this was upsetting to read - hope it was helpful. I've only thought of about half of it, but please PM me if you want to know more.

thanks for caring enough about us all to post here - I'm really impressed by that.

best,

John.

[Loula]

JFH. I'm so sorry to read your post. I have no words of comfort but know that you will find support for both yourself and wife to de brief.

[dory]

John ... I am so saddened by the loss of your precious baby ... a loss still breaks the heart irrespective of when it occurs. Go gently and take as much time as you need to mourn such an inconceivable but all to real tragedy.

[~MummaBear~]

I have a few things to add but most others have pretty much covered it.
When we had our little girl the midwife was wonderful except she lied to me. I know she was trying to help, make it less traumatic whatever but she lied to me and i knew she did and it was later confirmed by the post mortem. ( if you want more details PM me) Please as much as it may seem like the kinder option dont lie to the parents you need to be honest. i also had the Ob refer to my baby as a fetus and another midwife told me that it was a horrible thing to happen but imagine how much harder it would be at full term... i couldnt believe she said that.. i know my DD was only 18 weeks but she was still my DD and i still loved her.
I guess the things that really help are just being there for the mother/ father in anyway they want you there... I was happy to have someone with me all the time because DH was trying to deal with this too and he wasnt as supportive as i needed him to be ( i dont hold that against him, it was his baby too ) Being honest and open. you dont have to be too open but if the parents are asking questions it is because they want to know the truth.
The fact that you started this thread shows that you are miles ahead of some already. Nothing beats a person who genuinely cares that you are going through the worst day of your life

[Liviam]

That you all for your replies. Your information is so helpful for me to try and support parents/families. I am so sorry for your losses . No-one should ever have to ever say goodbye to their gorgeous little baby.
Thank you for sharing your experiences, both good and bad, with me.

[helle]

"we're unable to give you a d&c, you'll need to be put into labour because essentially, your baby has started to, well, rot" is never a good opening line.

a baby is a baby. stillborn or alive. i would treat every baby the same. lots of gushing over how beautiful and perfect they are.

i'm sure you'll do fantastic. you seem to show alot of compassion already

[MrsFabuloso]

I have had a 2nd tri loss too, though to be honest, I really don't remember alot about what happened after being told my baby has no heartbeat. I was only 18 at the time and I think I have blocked alot of it out to save my own sanity. I don't really remember giving birth, I remember being given the gels and then pethadine for pain which made me vomit, and to add to that having contractions, besides losing our baby, I was fairly miserable. I remember lots of tears from me, DH, my friend and my mum, but I don't really remember the care I recieved, or even how long I was in hospital. I think I might need to ask DH. Maybe try to get my hospy records. There's alot of things I regret, and I wish I could remember more, but forgetting is how I coped I guess.

I really jsut wanted to say to you all that I am so sorry for your losses. It is such a sad and tragic thing that any parent has to say goodbye to their baby, no matter what gestation or age. You are all very brave for sharing your stories.

Liviam, it sounds to me like you will be an awesome midwife. If you are concerned about such things at this stage then when you go through the process with a family, I think you will be a wonderful comfort to them. Thankyou for being so thoughtful and heartfelt.

[Bearmum]

Thankyou for asking us parents what worked/didn't work.
Context of me- still born baby at full term, cord accident, spontaneous vaginal birth.

Reading of other parents experiences, i feel fortunate at how we were treated.
I was at the major womens hospy in WA -King Edward, where they deal with the majority of high risk and still births, so have learnt a lot over the years. I think it would be worth you getting into contact with their 'peri-natal loss midwife', the chaplain services, and the social worker there. I'm pretty sure they have some kind of education programme for midwives dealing with baby loss.


Some points-
# Treat it as a live birth/labor- because it IS still ... birth (iykwim?).
The mother needs to feel empowered-and if there are no problems the mother needs to know that her body can do this. IF it's safe for the mum, keep intervention minimal. It is one of the only things she will get to do for her child- birth them.

# If the mother states at the beginning that she doesn't want drug pain relief/ epi etc, then don't keep offering it!
Offer massage, hot packs, shower or bath etc and talk her through it.
I have read of many mums whose biggest regret was having the peth/morphine/epi because they were too groggy to remember the birth and the precious moments they had with baby. Make the mum aware of this early on- that they may want to be 'alert' when bub is born. Even though I had always planned on having a drug free birth, I got scared approaching transition that I wouldn't handle the emotional trauma, and had a pushy midwife trying to talk me into morphine. I relented and agreed but hadn't had it yet- luckily my personal midwife came back from her break just in time and reassured me that she'd talk me through it. I am grateful for that, because now I have clear memory of my baby being placed on my chest, and all the time I had with him I was lucid.

* When babe is born, treat as a 'live born'. Skin to skin cuddles is still important!
Ask the mum (before transition!) if she will want the baby wrapped or skin to skin for cuddles when born. I was a bit freaked at first and wanted wrapped, but got over it and soon unwrapped him. That hour of skin to skin time I had with him straight after birth was invaluable. Help and encourage the mum to have this time.
DO NOT WHISK BABY AWAY!!!!
Coo over baby, comment on their cute hands etc, treat with the tenderness and care you would a live baby.

*Include the father or partner- make sure they have cuddle time/skin to skin.


*Let parents bathe and weigh baby.
Another precious parenting moment. One of our fav pics is of Daddy weighing bub, and looking proudly down at his big bonny boy on the scales. I found the patches of skin maceration on my boy distressing and wasn't able at first to join my DH in bathing him. But the midwife who was helping DH, kept cooing over bub,and commenting on how beautiful he was, till I got the courage to take over. So so grateful for that now.


*Encourage parents to stay in hospy with bub as long as they want.
It's the only time they will ever have, and they need that time to build memories to last forever. Do not rush them, sit them down and make them realise how important this time is (we were in a blur post birth, as is normal, and the hospy chaplain is the one who stressed how important it was to stay, and encouraged us to stay over night).

*Make sure all staff who will be entering room know of the situation, and get them to ackowledge the baby
I loved that every Dr and nurse that came in asked if they could say hello to our bub (when we weren't holding him, he was in a crib next to me). I loved that Dr's bent over the crib and commented on how beautiful he was.
I also would get scared that the staff who delivered our food didn't know our baby had died, and they didn't seem comfortable being in the room. So if possible get someone else to deliver the food.

*Read SIDS literature on 'what not to say to grieving parents'
'Teddy love club', and "Sands' also have literature about this.

*Encourage the parents to invite their family and friends to hospital to meet and and hold their baby


*Take photoes for the parents- of everything!
You'll hear this again and again- pictures are precious and we all wish we had more!
Take pics of them bathing, weighing, dressing baby. Encourage them to get a professioanl photographer to come to the hospital- I wish I had done that. There is actually a national group of photographers who do this for free- my brain just can't remember what they're called! Wish my hospy had their info, i only heard about them after.


Thankyou for taking the time at reading all of this, and caring!
xx

[dabradys]

The midwife thats was with me when we 1st found out she was so great she left the room and let me and my partner have some time together before coming back in and when she came back i could see that this had affected her too her eyes red and puffy she came everywhere with me till end of shift and came and told us she was back the next day she was there whenever i needed her she didn't even try to give us answers as for us there are none but just being there to listen was great.

the one that delivered Angel was very good to she explained everything and then after commented on how brave i was and how well i done and how proud she was of me.

Only 2 things i can't get over i never got to see more than Angels face i dont know what her feet or hands look like i just want to be able to have her hand in mine but its too late now.On the day i checked out at change of shifts a new girl come bouncing in while i was talking to social worker and she Congradulated me. The SW told her to leave and check notes before coming back i didn't see her again.

Hope this helps

[TeniBear]

Take pics of them bathing, weighing, dressing baby. Encourage them to get a professioanl photographer to come to the hospital- I wish I had done that. There is actually a national group of photographers who do this for free- my brain just can't remember what they're called! Wish my hospy had their info, i only heard about them after.

The Australian Community Of Child Photographers I didn't know about them until after, either, but we were able to get someone sent out to Ianto's funeral. (I know some people here might know the trouble I've since had in getting those photos, but I assure you, it was just that one photographer. Everyone else is pis$y at her too.)

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