So upset/ angry after booking appt

[Robs20]

Need a rant!!
Today I had my booking appt. Dd1 died at the start of this year - she had an undiagnosed genetic condition and had very complex health issues. She spent 4 months in nicu after birth.
With this pregnancy I had an early private scan 2 weeks ago and know I am pregnant with twins. For both of these reasons I know I should be consultant led.
Today’s midwife told me I can’t see a consultant until 34 weeks and I won’t have another midwife appt until 19 weeks. I’m not eligible for any extra scans.
I feel so unsupported and not sure what to do now. I requested to see a consultant sooner and she said they will think its a waste of time. I also asked if I could see a bereavement midwife (I know they have them at this hospital as I follow one on Instagram!) and she seemed to think it was a strange request.
Should I try and transfer to another hospital? Complain to this hospital? As you can imagine pregnancy after loss is super stressful!

@Bluebelltulip I missed your comment my somehow. I am sorry to hear about your daughter and wish you all the best with this pregnancy. How often are you having appointments?

@PutOnAHappyFace is it a diagnosed condition? We have been discharged by genetics but I agree it might be worth getting in touch again!

You need to see the genetics screening service. I had to push. I'm a carrier for a genetic disease but the booking midwife had never heard of it so tried dismissing me but I pushedharder. I'm so sorry to hear of your loss xxx

Even if you have been discharged from genetics, please give them a ring, let them know you are pregnant and that you need advice

@Robs20 sorry for your loss too. I saw a consultant after my 12 week scan then started seeing the specialist consultant at 18 weeks, every 4 weeks to start and now every 2 weeks from 28 weeks. I can ring the bereavement midwife any time. My daughter had a heart condition which wasn't genetic and I also had a fetal echo. I hope you get more support.

OP I'm at the Royal London second pregnancy, and I'm consultant led because of preterm delivery at 34 weeks and emcs with DC1. I've been surprised at how many more appointments I've had this pregnancy and in a good way. I've seen a consultant every 3 weeks or so, and I was offered extra growth scans at 28 and 34 scans just to be on the safe side even though Baby is measuring fine.
You should definitely complain! Not sure what trust you're in but it sounds wrong.

Have you considered purchasing some private scans? Some near me (SE) are around £50-60. I'm so sorry for your loss OP. Dd nearly died following hospital negligence after birth trauma and I've said should I ever be brave enough to have another pregnancy I would want a private midwife there on the day and I would pay for additional scans. We actually had a few extra just to tell us gender and a fun bits like the 3D stuff and it wasnt overly expensive. My care was consultant led and I saw a consultant at around 16 weeks and then not until 32 weeks (when a problem was found).

Yes my DDs condition is diagnosed so I'm guessing it won't be as easy for you. Hopefully a referral back to them will give you some sort of support and monitoring.

Formal complaint via PALS naming the midwife and asking for an urgent response. that's BS that you shouldn't be consultant led.

I was told twins at 12 week scan and had scans every 2 weeks afterwards due to them sharing a placenta. I was consultant led

I'm so sorry, Robs. I don't know what to suggest, others can do better than me on that score, but I do feel for you - especially about your little one who died early this year. That must have been heartbreaking for you.

Congratulations on expecting twins .

I was pregnant age 39. I was consultant led from first booking appointment and saw a dr for the first time at 8 wks. Literally the only risk factor was my age. Do you have a helpful gp you could go & see? I would definitely push for consultant led from now that midwife sounds horrible to you op x

I have found genetics really good at helping get care / scans etc. Do not take no for an answer and keep pushing.

@pinkstar01 that is very interesting! I don’t want to be too pushy but was expecting a bit more support. I hope your baby comes safely and as close to due date as possible!
I am at Kings so not the same trust but another big London hospital.

I sadly had to have a tfmr last year with my first and a post-mortem/genetic testing. Nothing was found and I was told the condition was just a result of "one of those things". Basically, something didn't form correctly and then it had lots of knock on effects. That it wouldn't affect any subsequent pregnancy.

Nevertheless, I was told by the consultant that in my next pregnancy (this one) I'd be consultant led (by her) and given an extra scan at 16weeks. Just to check everything is ok. She was a lovely lady and even said she knew I'd be back seeing her again soon.

I got pregnant again some months later. I told the midwife what the consultant said at booking and she put it all on my notes. But then, i saw the consultant's registrar at 13 weeks. A man who just seemed the complete opposite. Totally disinterested. He literally mumbled something along the lines of he's not sure why I'm there and discharged me back into midwife care.

I never asked for a 16w scan. I just hoped a date would come through the post but it didn't. I never mentioned it to anybody again because quite frankly, I just don't have any fight in me anymore. Instead, I paid for a private gender scan at 16w. I found out the sex and the sonographer told me baby looked fine as far as she could tell. This, of course, made me feel better until my 20w scan.

I'm not sure why I'm telling you this to be honest! Just because our experiences are quite similar in some ways, I guess. Though they're not too similar, my loss was in the second trimester (just). Your experience was traumatic.

The only other thing that I remember is the bereavement midwife said I could phone at any time. Can you find the details directly from your hospital's website or any of the information given to you after your loss? (I was given leaflets).

Worse case scenario, get in touch with PALS. The patient liaison service, every hospital has one I believe. They might be able to help you.

You should be having additional scans due to having twins. At your 12 week scan you can probably speak to the screening midwife about additional scans due to you having twins.

I am 21weeks with identical twins.

At my 12 week scan i was told my twins are identical (share a placenta). I spoke to the screening midwife afterwards and she made all the appointments for me. I am consultant led. I am scanned every 2 weeks from 16weeks right up until the birth. I see my consultant after every scan.
16-24weeks scans are with fetal medicine and then just go to normal antenatal ultrasound unit.

I have had a few scans at UCL as they are twins specialist unit. Maybe look at that hospital if you can choose?

I have only seen a midwife twice so far at 8weeks and 16weeks. Next time is 25weeks.

Firstly I am so sorry about your daughter.

Secondly I think you absolutely should be consultant led, especially as you are now carrying twins. My situation is slightly different to yours but I am currently 13 weeks pregnant after having a TFMR at 31 weeks in March this year. I unfortunately contracted CMV during very early pregnancy and it wasn't picked up until I was 28 weeks and by that point the damage had been done to my DD, she was severely affected and MRI scans and amnio testing showed severe brain damage and her head and brain were off the chart small and underdeveloped so we made the heart-breaking decision to not continue with the pregnancy as we thought it was for the best considering the severity of the brain damage. Anyway, I am now 13 weeks and at my booking in appointment the midwife was fantastic and arranged for me to see a consultant at 16 weeks and I'll be under a specialist midwife lead team for women who have suffered losses. My bereavement midwife also arranged an early scan at 9 weeks and I have been told I'll get extra scans at 28 and 31 weeks as that was the time it all went wrong last time.

You should absolutely push to see a consultant as your DD had a genetic condition and they should be bending over backwards to try to put you at ease with extra scans and testing. I really hope you get through to someone who can help arrange this, pregnancy is an anxious enough time as it is but it's a whole new level after a loss. Wishing you a very healthy pregnancy.

If your in UK? You will see midwife after 12 weeks scan, also at 15 weeks so not sure why you've been told this , I saw consultant at 9 weeks (far too early in my opinion) however I would definitely question this

I am a specialist midwife, supporting families like yours.
Firstly I am very sorry for the loss of your daughter.
Secondly, you are right to be angry, upset and confused. You have certainly been incorrectly advised, and there are a number of things to make decisions about to make sure you get good care. Please feel free to PM me if you want to use me as a sounding board or to pick my brains. I work in Surrey, Sussex & parts of south London, so have useful contacts or knowledge of the hospitals.

Hi @Robs20

I'm so so sorry to hear about your daughter and the way you've been treated.

I'm currently 15 wks pg with my 2nd baby. We have 2 different genetic conditions in the family (my brother and nephew both were both very sick and passed away as babies). I have been referred to fetal medicine for scans. With my first pregnancy I had a letter recommending this from the geneticist. With this pregnancy i just demanded I be reffered and actually the midwife was very supportive.... this didn't even actually happen to me so I think you definitely have a strong case to be referred!!! I also rang fetal medicine myself to check if been referred and that seemed to speed things up.

Hope that at least helps a little xx

@Robs20
Thank you! I’m so sorry for you too!

So, my last pregnancy I had 12 weeks scan in antenatal, 17 in Fetal medicine,20 in antenatal, 21 in Fetal medicine, 25? In Fetal medicine( when I was discharged from their care).

This time I’m booked for my 12 weeks scan directly in Fetal medicine(I’ll be 13+3).

They usually saw me about every 4 weeks even with my baby that didn’t made it.

I’m pretty sure anyways that after your 12 weeks you would have been referred to some consultant, plus adding you’re having twins and that’s considered high risk by itself alone.

Hope you get soon through someone thou because I know how stressful and creating more anxiety can be!

I can tell you from experience that I’ve been at times loaded with some grief waves throughout my subsequent pregnancy, take your time and a day at a time!

Xxx

Thanks everyone for the supportive comments. I did wonder if I was expecting too much yesterday and felt a bit like giving up...have woken up today with a renewed sense of determination to get as much help as possible!
DH is away for a couple of days with work so I have booked a private scan on Monday to see if things are ok, and if they are we will contact 1) the consultant that led dd’s care (hoping he can advise a sonographer/ obstetrician what to look for on the scan to see if the condition has reoccurred) 2) geneticist. We have been in touch with St Thomas’ and will look to switch care if things at Kings don’t improve....
@Nanmumandmidwife thank you, I will send you a message.