I need your help to support families

[Lisa]

Teni - Even 4.5 years later I cried whilst writing down that phone call. All this time later and I am still tortured by that call

I definitely agree to treating it like a live birth. As much as we knoew the reality, the respect given to our child is so important.
I am so sorry to hear you were made to leave before you were ready. I was never told when I had to go thankfully. I had a room and DH had a fold out bed and we were there for 4 days in total. Leaving was the hardest thing I had to do as that was the final goodbye before the funeral.

[kateo]

I had some good care and some truly AWFUL care when we found out our precious Ellen died on 13th Jan 2010.
We went to hospital for a "check up" after her due date. MW couldn't find a heartbeat. She got a dr but MW didn't say Ellen had died. The dr she got wouldn't say anything either so he got another dr who finally told us. Be brave TELL people. We were left guessing what was going on for about 1/2 hour....it felt like months! My hubby had to shout at one of the dr's to find out what was going on!
The care we got during labour was good BUT I was not offered one of the "bears of hope" to take home in my arms from hospital. It would have made a HUGE difference to have this. The MW who looked after us also didn't get a lock of Ellen's hair. Luckily we thought of this before she was cremated.
They also have a thing at that hospital that they give out special quilts that are donated. One quilt is big and the other is small, one goes with baby and the other stays with the parents. This was not offered to us either.
Not being offered the quilt or the bear made me think I was not as important as other mothers who had lost a child. Worse it made me feel they didn't think Ellen was important. I was and still am upset about this. I have been offered these things since but have rejected this. It does not mean the same as if it had been properly handled.
I also had hospital mental health workers come into the room when I was in labour and even though I clearly said I did not want them there they came in. I was very upset by this.
Generally the MidWives were careful, friendly and understanding.
I was encouraged to leave hospital after one night. I gave birth to my full term baby at 7.30pm and by lunch the next day I was home.
As we live out of town and I was at the major hospital and not transfered with baby to the local hospital I did not get midwife visits at home. I was very scared about how my body was after birth and didn't feel brave enough to ask anyone. One visit even would have been good. Had I had a live baby I would have got that service.
Reliving this makes me sad but perhaps it will be read by a carer and things will improve for other mothers.
Kate

[TeniBear]

Oh, and don't tell a mother her child is "starting to smell"! FFS, that really upset me (made worse by the fact that my mum and Scott agreed ) - I freaking LIKED his smell! He still smelt like a normal baby to me It was that beautiful sweet smell... hence why my blog is called SWEET Soft Smudge and not Stinky Soft Smudge

[ferrals5]

I had a senior midwife through my whole 9 hour labour to end our pregnancy due to multiple fetal abnormalities what made me feel comfortable was she told me exactly what was going to happen and she would tell me when things were happening eg. she could feel the little head and if i need to go to the toilet to let her know so she could place a pan in the toilet as some babies come real quick once mum is on the loo.
She also only asked once what we wanted eg. to see Abbi being born do we want to hold her i said i did not want to see Abbi being born incase she tried to breath so the midwife got my mum and sister to hold a blanket up so DH and i couldnt see until she was out and cleaned up.
The most touching thing was the midwife treated her like a normal birth she passed her to us and said see you have a little girl showing us her privates (as she new we had 3 boys ) and then said she is absolutely beautiful and a sweet little angel there was no mention of her deformities just how beautiful she was.
The midwife also said Abbi did not take a breath and had passed away during the labour which put my mind at ease knowing she did not suffer she was compassionate and caring she shed a tear with us showing us she cared and we were not just a job to her.
The things i did not like was the grief councillor came to talk to us while i was in labour i said no i dont want to see one now but she just came in i was in so much pain and the inducing drugs had made me have to rush to the loo constantly with cramps and she still wouldnt leave so i yelled at her to get out they should come before your induced or after bub is born not during.
And the other thing i did not like was we took our camera to take photos and were just overwhelmed so the midwife offered to take them on the hospital camera which was great she then took Abbi away and took photos when she came back and showed us what she had taken and said they would transfer them onto a disc and post them to us which was good but the camera was not left in a sercure place and the memory card was not removed for safe keeping so another nurse came along and deleted the photos by the time we were told Abbi had already gone to have the autopsy so we were unable to have some nice photos of our daughter when the senior midwife who delivered Abbi found out she rang us devastated and the organised Abbi to be brought back from westmead hospital to our hospital and she collected her from the morgue and brought her up to the maternity ward wrapped her in a blanket and took one photo of her beautiful little face and hands she rang me and told me what she had done and she said Abbi still looked fine after 10 days in the morgue and that i would like the photo it turned out to be ok and i thank her every day if it wasnt for her i would have not a single photo of our girl it just proved to us she really cared.
Sorry i have gone on but i hope it helps.

[dory]

Wow - first of all - thankyou....... thankyou for asking rather than just assuming. That tells me more than anything that you are going to wonderfully in your new role... of course you'll be scared and nervous, but so are the parents. One of the sad realities is that you will learn from your mistakes, and that is hard in any job that involves people at their most vulnerable. but you will make less I'd guess because you have already asked, rather than assumed.

I have had two experiences with extremely premature labour and neonatal death. One birth happened to be on a day when my Obs was available and I was cared for to a great extent by my Obs and the middi. I was 22 weeks gestation and had never given birth before and hadn't been to antenatal classes yet. The other birth was in the middle of the night where the Obs on call was busy with women whose babies were more likely to survive than mine and I was cared fr predominantly by middies. I was 19 weeks gestation, but had been through labour before but still no antenatal classes. My admission into hospital and post birth care were obviously the primary responsibilities of the middies, but my Obs was visiting twice daily. So what I plan to do is just tell you what helped me, what didn't and who it came from. I suppose you might respond slightly differently depending on whether the parents have had the chance to attend antenatal classes or not....

On my first admission the Middi who took my call and later managed the admission - kept us informed as best she could at every stage, about what to expect next, obviously limited by her responsibilities with the hossy system, she was attentive and understanding and tried to allay both DH and my fears, she offered us refreshments. She was kindly without being smothering.

Whilst on the antenatal ward the only two things that were hurtful was when the flower lady came in and commented that I didn't have many flowers.... I presume most maternity wards keep a list detailing what the circumstances of each patient is. I didn't see the flower lady again. The other thing was my name wasn't written on the board above my bed... my Obs ended up doing it himself when he came in. During this time everyone who came to see me and DH were understanding, chatty if we were but otherwise, gentle and brief.

When I needed attention the middi who first came, initially tested for the baby's heartbeat with the visitors in the room. She didn't ask if that was ok. In the end I was glad the visitors got to share that. When I needed serious attention she asked everyone but DH to leave, in a kind but firm manner. She was good with how she managed me, gave us enough information about what was happening and what would happen next.

In the birthing suite I was petrified and an older midwife I had did an exceptional job at calming me. I remember asking whether I could have a caesar and her response, kind but factual, and then I remember saying something to DH like, we haven't even done our breathing yet, and she responded by holding my hand, asking me to look at her... when I did, she said very calmly, all you have to do is listen to me, I will guide you and we will get through. She was very good too with DH letting him know what sorts of things he could do to help. After a while we got into a pattern and it worked well. I needed her to take control like she did, and she did it well and with respect for both us.

The Obs came in and told us both what was happening and what to expect next and in fact the Obs did this exceptionally well at every stage, but I expect that Middies would be able to do some of these things too. What he also did was to prepare us gently for what we might have to expect our baby to look like and that our imagination would be worse than reality, whether the baby would be alive or not, started us thinking about whether we wanted to hold our baby, whether we wanted footprints and photos taken, whether the baby would be put on my chest straight away with the cord still attached, whether DH wanted to cut the cord, names for the baby, whether a post moretem was something that was needed. This wasn't all done at once but over the course of the labour, when there were lulls.

There was a shift change and the darling older middie went off shift. A younger one replaced her. I found it harder to build a rapport with her. I can't really remember what stage the labour was at. In time I felt more comfortable with her and she stayed until the birth.

Once Amelia was born the middi asked quietly if we wanted to know if the baby was girl or boy. and she told us. Then the Obs asked, and we acted as if we didn't know but shared a wry smile with the middi.

The Middi got the little sands book and helped us get handprints and footprints and filled out the little cards with just exisquite handwriting and treated our precious daughter as if she was truly precious and treated Amelia with dignity and respect. She helped us in feeling validated as parents and comfortable handling our wee little girl. We didn't have clothes for Amelia, so she went and got a selection and we all chose them together, including blankets. She even put a nappy on Amelia. She didn't ask if we wanted to dress Amelia. I regret not dressing her now. She didn't ask if we wanted to bathe Amelia either, and that's something I regret. I am not bitter about it but it would have been good to have been given the choice. Unless you've been through it before,in the aftermath of labour and such heartache, it's hard to know what to ask for, especially for extremely prem births.

We were left alone for a very long time in the birthing suite to marvel at our precous baby girl We were given refreshments and checked on.

The Middi was really good about the effects of the epidural I'd had. She was good at letting me shower by myself but being nearby if needed and good about getting us back to our room and making sure DH was set up to stay the night.

The Obs saw us as we left delivery and then came into our room a little while later, and went over some more things with us.. and told us a little about what to expect from grief.

The hospital was happy for us to stay as long as we wanted and to have Amelia with us as long or as frequently as we wanted. The middis always treated our baby with respect and dignity and us as well - they tended to Amelia as if she were a live baby. They called the place where Amelia was when she wasn't with us ... the place for special angel babies. I knew very well what they meant, but it was nice that it wasn't referred to. Although on my second admission one of the middies did say oh we'll have to get the baby from the fridge. I corrected her. So don't do that. Even though I knew and I was more knowledgeable on the second admission, remember the babies are much loved and longed for and deeply missed.

When it was time to go, the middis arranged for some of Amelia's clothes ( they asked us first) to be delivered to us, and they were delivered to us with a single red rose. It was a really nice touch.

On the second admission it wasn't as smooth as I'd spoken to the Ob on call who said to come in but hadn't told the middi. But they handled the surprise well.

The middi who managed my admission was friendly, but when she adjusted my bed to invert my feet, it was an old style bed and I was much heavier than she was and she ended up shooting up into the air and I was clunked down. It really upset me to be jarred around like that. So if your patient is heavier than you, get someone else in to help if you have an older style bed.

Again the middi was inclusive of DH.

I was given panadol to help settle the uterus. Later on when I was asking for pain relief options I was told there were none at all until the panadol wore off. It would have been nice to have been told that before I accepted the panadol. So I laboured without any drugs. I don't think gas was offered... can't remember.

The middi was very attentive to me during labour and was very directive when my oxygen sat levels dropped and her approach worked. I was pretty out of it. One of the other middis who came in after Sophie was born tried to tug on the cord. I didn't like that, and the original middi scolded her. Even though it was shift change, the first middi stayed with us.

Again we were left alone, but this time DH and I were able to ask for what we wanted - hand foot prints, bracelet, hospital id cards, clothes, bathing, photos, baby straight on my chest after birth.etc. I couldn't bathe Sophie, but DH did and he nursed her for a long time whilst I was being tended to and coming to.

The Obs was a bit blunt saying "you know this has happened because of "x condition". I didn't appreciate that, as it was delivered bluntly and after seeing me for less than 10 mins from admission to post birth, when I had been under the care of an Ob who I had a good rapport with and I'd told the Ob on call my history. I know most Middis are VERY careful about what they say and don't say about medical issues, and whilst I know that does cause angst for some people, I understand that ultimately a Middi may not be qualified or insured to say those things or deliver that news. But maybe if an Obs has been a bit blunt they can try and help the patient/parents through that?

Again, the hossy were happy for us to stay as long as we wanted and to have Sophie with as as long as we wanted. There was that terrible comment about the "fridge". When it was time for us go, we buzzed and it took ages and finally someone came. We were distraught at leaving and giving up our girl, and the middi who came to us obviously wasn't trained in dealing with angel babies. She was clearly petrified. When she realised she said I'll get one of the other middies. I know it was hard for her, but it was pretty hard for us too, too build ourselves up for a last goodbye only to have to do it again. The little bit of composure we'd managed to muster had disintegrated. So my tip there is, tell junior staff to make very sure of which rooms the bereaved parents are in. I am sure the young middi was as traumatised as we were.

I really liked when the middies treated our children with respect and dignity and genuine care. I liked when they used our childrens names. I liked when they told us how beautiful our children are. I liked it when they said sorry, although not many did say sorry. I liked it when they sat by my bed and held my hand ( well only one each admission did this).

DH says there it felt like there was too long between being checked on with Sophie, but they were also quite busy that night.

Anyway, I hope this helps. Good luck and again, thankyou for asking. It means a lot to be asked.

[ButterflyForever]

I wrote a document that is in the process of getting implemented in my local hospitals, I am happy to let you have a copy if you pm me your email,

[Lisa]

So my tip there is, tell junior staff to make very sure of which rooms the bereaved parents are in.

I definitely agree with Dory here. The people who come around offering tea & coffee, the people selling magazines and the people who bring your meals also need to be told as it was so uncomfortable for me & them when they asked me what did I have and I would have to reply that I had a little stillborn boy.

I was also asked the same thing when I went into theater to have the placenta removed. It was horrible and something that still upsets me. The nurse in there was all smiles and asked if I'd had a healthy little boy or girl. I again replied that I'd had a beautiful little stillborn boy and that is when the tears flowed & flowed. It was horrible. There had been so much time between Noah's birth and me going to theater that surely someone could have informed them of my exact situation.

[Liviam]

Thank you all so much for sharing your stories with me. Somethings that have happened to you (the treatment and comments you received) are just breaking my heart. Those comments and treatments, even something that I would never have thought of like when Ianto was left on the scales. You are all so incredibly and unbelievable strong women to me. I'm going to hold onto your stories and always have you with me in my heart to try and support grieving families in a special way. I can't thank you all enough .