Premature birth - Best Midwife care

[Mumof2littlies]

Hello...

I am doing a piece of work about how Midwives can best look after women when their baby is admitted to the neonatal unit.

I would love to hear your thoughts... good and bad...

Thank you

I think just taking the time to check how they’re feeling and ask questions about their baby; I wanted people to ask about my baby so I could tell them and show pictures so that I felt a bit normal. Also to recognise the small milestones and celebrate them; with a premature baby you might not get to do normal things like feed them until they’re a few days old so you want that achievement to be recognised.

Thank you user1493413286, every single comment I get back is so important to take forward and get mothers voices heard in what they actually want from Midwives during a time of such turmoil xx

What I would have really benefitted from was some information about what to expect - especially in terms of how long we could expect to be in hospital. For example my son was born at 34 weeks, we were lucky in that he was a good weight with no major health issues, but nobody told us that we would be in hospital for at least two weeks for tube feeding as babies can’t suck properly until 36 weeks. Ultimately we were out much quicker than many (after almost exactly two weeks) but the uncertainty combined with the shock of the situation was very stressful.

I think for me I was pushed to be with my baby as much as possible, this was repeated over and over again to the point I would beat myself up over leaving to go for a shower. I kind of felt like I was forgotten about straight away, I honestly don’t remember my postpartum state - I don’t think anyone asked how I was really.

Being involved with feeding really helped me, and as @MiniMaxi said the expectation - all you really want to know is when you can leave! I appreciate they don’t want to give you false hope but we were given absolutely no idea of timeline, I didn’t know if we were looking at days, weeks or months.

Brilliant, thank you for your comments MiniMaxi and Teacaketotty... It’s just so great to start hearing voices from those who are, and have been through the experience of having a baby admitted to the Neonatal unit and what you really needed/wanted/got from Midwives that can, and did make a difference to your experience xxx

My baby was born at 30 weeks. DS was taken away as soon as he was born; I went from having 10 people in the room to a midwife and a trainee midwife. They delivered the placenta, put in a stitch then left me to have a shower. DH helped me, then they came back with a couple of small syringes and said I needed to hand express to start my milk. They left again, I was able to go and see DS and then I was discharged. I was in hospital 6 hours. My son was there 10 weeks.

The hand expressing was hard, I didn't know what I was doing, i got a tiny bit in the syringe and thought oh crap, I'm failing already. it was only much later in NICU that I received proper help and support and explanations that tiny amounts were normal so I then had huge guilt I threw away the syringe. There was no midwife follow up, except for a check up 1 week later by a different midwife in a different hospital as DS had been transferred. They weren't interested in me or actually in my baby, as soon as the birth was done, that was it for them.

I'm now pregnant again and tbh it's making me a bit anxious about what will happen this time. I felt like I went through everything on my own the first time, if it wasn't for my DH I felt like they didn't actually do anything for me. Especially having such an early baby, a first baby. Maybe more education on how they can be compassionate in that situation. Hopefully I just had a one off bad experience.

Oh yellowgecko, it makes me sad to hear the experience you had... I’m sorry that you were left feeling so alone, and in the same breath it’s a story I want to try and stop, I am really grateful for all of your feedback and stories because without your voices nothing can change...

I really hope that this time around things are much better and that a good experience will offer some closure on your last experience.

Thank you for your message xx

My baby was born emergency section at 25 weeks. I was in for a week, in two hospitals. Baby was transferred at 3 hours old and I was transferred the next day to the same hospital to be near her.

Good bits:
Lots of help with expressing.

My own room in both hospitals, with food delivered, so I didn’t have to see newborn babies or other mums.

A video link to the neonatal room (except it didn’t work, so it actually caused more stress).

We got to touch our baby once she was stable but before they took her away to the other hospital. This was so important as we didn’t know if she would survive.

Bad bits:
My birth notes were on a piece of A4 paper as I was transferred to a hospital out of area. There were serious mix ups with my care because of this. I was in a high level hospital with parents from all over the country, so this must be quite common but there didn’t seem to be a good system in place for the mums transfer, only the baby.

I struggled to visit my baby as often as I would like, as I needed to be pushed in a wheelchair and the midwives were often too busy to take me. Or I couldn’t get picked up again after the visit.

Please please keep the bounty lady away! Poor lady was so embarrassed, luckily I was in a good mood at that point.

I had my 10 day check up at the hospital- being around heavily pregnant women and those with newborns wasn’t easy.

A few times mums on the ward wanted advice about recovery, stitches etc. The correct route was to ask via our GPs but it was hard given the long travel to the neonatal unit and the hours we spent there. The neonatal nurses pulled some strings to get a midwife or nurse to advise. It would be nice to have some ongoing care for the mum at the neonatal hospital. I knew women who were hundreds of miles from their gp/hv , in a hospital with their baby, but couldn’t get any care for themselves.

Another good thing: someone took a photo of my baby for me before they transferred her. It was a great comfort and help with expressing.

29 weeker here. I had a fantastic midwife for the birth, really great. And couldn’t fault the care my daughter received for the most part (9 weeks in hospital). But there was nothing for me after, no home visits as my baby was in hospital. They told me to try and track someone down in the day unit to do a check on me a few days later but it was cursory and no one followed up. No 6 week check, it’s like I was completely forgotten about, very different to my first birth.

Of course at the time I was solely focused on my baby in NICU and trying to maintain some normality for my other child, but in hindsight I was completely cut adrift the moment I gave birth.

Like @yellowgecko my ds was whisked off to SCBU as soon as he was born, and as soon as the placenta was delivered (and I'd had a hemorrhage) I was left alone in the blood splattered delivery room with dh to help me have a shower when I couldn't stand up.
It was like I then didn't really exist to the midwives, I was taken to postnatal and left there. No one would take me to SCBU, no one explained what was up with ds, and when I said I wanted to bf I had a couple of tubes chucked at me.
I did get to stay in for a few days, so I'd wobble round to SCBU to be with ds, but no one ever checked on me really, and it wasn't till they went to discharge me that it turned out I should have had blood tests and at least iron tablet. DH had had to bring me iceblocks and a coolbag so I could express milk in the night as no one would take it to SCBU and there wasn't a fridge on the ward
So, from a midwifery perspective - care for the mums. I think all mums with a baby in NICU/SCBU should have a named midwife, be checked at least everyday, and regularly through the day if inpatients.
They need food and water - you don't want to leave your baby, and may miss meal times if you are doing cares, so there should be a system to bring food to the parents room. Which I didn't know was there until another mum told me.
If your baby goes to SCBU/NICU, there needs to be a leaflet telling you how it all works practically. You are shellshocked, having just given birth, had your baby taken away, and even if someone tells you things, you aren't in a mind to remember.
Small things - somewhere to express milk on the ward or store it. If SCBU/NICU isn't directly accessible from the ward, then please get a chair put by the door. I remember standing in the public corridor, propping myself against the wall wondering if I could manage to stand up until someone came to open the door

I would say reassurance. Making sure the parents know everything good and bad. If the doctors are speaking in medical terms then repeat to the parents so they understand.

A hot drink. A smile. Even a hug. Seeing your baby that fragile is scary.

Peajotter, Lou573, CMOTDibbler and dollypops15... Thank you so much for the replies above, and apologies I am only just getting around to thanking you.

The replies above are all wonderful in their own right and are such a powerful source to be able to use to start to get your voices heard in how we, as Midwives, can make Midwifery Postnatal care more appropriate...

Thanks again xx