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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to not go to midwife regarding reduced movement? *Poss TW?*

999 replies

booandbumpp · 18/09/2018 07:52

Can someone please tell me what to do? Posting here for traffic.
I am 34 weeks pregnant - complicated pregnancy, baby has a severe CHD called Hypoplastic Left Heart Syndrome, and will need a surgery in the first week of life.
I also have high pressure in the placenta and am on weekly monitoring for that. Baby is measuring small due to this and I need to be induced early - at 37 weeks - if the pressure stays high, which it has consistently been for the last 5 weeks.
Baby will be borderline "big" enough for the surgery if born at 37 weeks. Can't keep him in longer, can't delay surgery, otherwise he will definitely die. Nothing I can do to help with the pressure in the placenta.
I've had reduced movement yesterday and today. He's never been the most active baby, but yesterday and today I've barely felt him. FMU consultant told me to watch out for this due to the pressure in placenta possibly getting higher and there being no forward flow of blood to baby.
I haven't yet - partly because I'm having two scans tomorrow - one with cardiologist, one with FMU consultants anyway, so I'll get answers then. Partly because I'm selfish - I'm scared, I don't want to miss another day of work, I don't want to drag my partner out of work to sit next to me for 4 hours at a maternity hospital.
And also because honestly what can they do? They induce me now because my placenta won't work properly, he'll still die because he won't be able to have surgery. They leave him in there with negative flow, he'll die, or stop growing.
I'm not crying, I'm barely upset, I'm just stuck. I feel so annoyed at myself for not being able to make a decision, but I guess thats because I feel like no matter what decision I make, its the same outcome.
SO, sorry that was longer than I expected. WWYD?

OP posts:
Thread gallery
7
eelbecomingforyou · 03/10/2018 15:13

Oh, @booandbumpp, what a beautiful and heartfelt post. I wish you all the very very best, and I hope all your hopes come to be.

HaveYouSeentheWritingontheWall · 03/10/2018 15:16

@booandbumpp yes I do understand because I had the same things said to me all those years ago, when we found out about the 4th defect we knew that our baby didn't stand a chance. The comments we got were trite platitudes, said without malice, well meaning but unable to make us feel better and probably making us feel worse.

Don't feel bad for saying what you feel.
You don't need to apologise either.
Oh and it isn't selfish to be glad that someone understands

How did the scan go?

peachgreen · 03/10/2018 15:16

Oh OP. What a beautiful and heartbreaking post. Thank you for sharing it with us. You are an amazing, amazing mother and I wish you and your little boy everything you hope for and more.

Pinkandproud · 03/10/2018 15:23

Nothing useful to say but just Flowers for you. You already sound like a wonderful mother and I’m sure you will be for whatever time you have with your precious boy.

MilkAndSevenSugars · 03/10/2018 15:27

Your last post made me cry. Your little boy is very, very lucky to have you as his mum Flowers

starfishmummy · 03/10/2018 15:29

Sending lots of love to you xx

taratill · 03/10/2018 15:33

Goodness me OP what a lot you have had to process, I am glad that there are posters on here who understand your position and can be supportive.

I don't have any experience but I think you are handling this incredibly well. You and your partner are already amazing parents and I really hope that you get the experiences with your son that you are wishing for. I feel very humbled by your posts.

All of the very best for next week you are in my thoughts Flowers

CheeseCrackersAndWine · 03/10/2018 16:09

I am so sorry you are going through this. Sending you so much love.

My daughter has a very rare syndrome associated with various CHD's and I know of a little girl in the US who has HLHS due to this. I fully understand how severe a diagnosis this is and I just wanted to tell you that I am sorry and you are in my thoughts.

I truly hope the outcome for your baby is better than anticipated xx

Laiste · 03/10/2018 16:15

Thinking of you at your scan OP Flowers

LuubyLuu · 03/10/2018 16:31

I am so sorry for what you are going through, and wish you all the strength in the world XXX

Original poster
booandbumpp · 03/10/2018 16:42

Pressure in placenta is still high but ok. Fluid is still high but the consultant (who is lovely - probably my favourite I've met of the 7 I've seen) noted fluid in the stomach and bladder so she says that the likelihood of a swallowing problem is very very very low.
She said the heart beat is strong - blood flow to brain and right side of heart is perfect. She didn't look at the left side as not her speciality.
Steroid injection today (ouch) another tomorrow. Hospital bag is packed. Just waiting for Sunday now really.

Thank you for the support it really does help xx

OP posts:
HaveYouSeentheWritingontheWall · 03/10/2018 18:12

Ok, that sounds a little more reassuring, is the hospital you will give birth in the one that will do the surgery? I remember the plan for us was to give birth in local hospital then be transferred to the paediatric cardiac unit for surgery.

Original poster
booandbumpp · 03/10/2018 18:17

@HaveYouSeentheWritingontheWall I will give birth at Leeds hospital as that's where the cardiology specialist is - they said they'd prefer to not transfer post birth as can be quite traumatic. I am from Sheffield so my weekly appointments have been at Sheffield and that where I was today.
Yes at least the plan doesn't have to change again! That's a bit of a relief x

OP posts:
HavelockVetinari · 03/10/2018 18:21

Im really late to this but just wanted to wish you, your DP and DS the very best. I am praying for you. Flowers

Almostfifty · 03/10/2018 18:53

Another one here who is thinking of you.

Fiveletters · 03/10/2018 19:29

Just read the whole thread, wishing you and your little one all the best. He is very lucky to have a mum like you.

HaveYouSeentheWritingontheWall · 03/10/2018 19:30

@booandbumpp it's good that it is the same place for birth and surgery, I was puzzled when I was told the plan for us as the paediatric cardiac unit is only a few miles away from our maternity unit, I remember wanting to question it but forgot to ask because of the million and one other questions I had (probably due to the immense stress that we were under).
Can't remember if you have already mentioned it so I'll anyway, is this your first baby?

Laiste · 03/10/2018 19:32

I'm glad the scan was productive and showed that the likely hood is that there is no problems with swallowing. Glad too that you got on well with the consultant today. Eases the stress a little bit when you get a good rapport like that.

deeplybaffled · 03/10/2018 19:46

Have just read this thread through.
I have no experience or wise words to offer, so just wanted to say that I am thinking of you and praying that things go as well as they can on Sunday. X

theSnuffster · 03/10/2018 19:50

Wishing you get the absolute best possible outcome for you and your baby x

Foofloofah · 03/10/2018 20:00

Just read the whole thread. Wishing you nothing but the best x

dustiseverywhere · 03/10/2018 20:09

I want to say how sorry I am you are going through such a traumatic time.

You mentioned that if the baby was found from in utero tests to have digeorge's then they wouldn't have operated.

I just want to say to anyone who is reading this because they've just had their baby diagnosed with digeorge syndrome, then don't be alarmed by the OPs sentence about that. It's not a terminal genetic condition, and they can and do operate on heart conditions caused by digeorge / 22q11 deletion all the time, and very successfully. So if you're in the recently diagnosed and still reeling position and have googled or searched mumsnet for digeorge syndrome, don't be alarmed by the OPs comment about this. I know of kids with this syndrome who have had heart surgery.

Sorry OP, I don't want to upset you but also remember reeling from a couple of inaccurate things I read on the internet just after our child was diagnosed with digeorge syndrome.

Original poster
booandbumpp · 03/10/2018 22:12

@dustiseverywhere no that's ok I understand. I meant that the particular surgery that he would need (single ventricle) meant they might not do the surgery in my baby's case - not all babies with HLHS and certainly not all CHDs.

OP posts:
Original poster
booandbumpp · 03/10/2018 22:16

@HaveYouSeentheWritingontheWall this is my first baby yes - so in a sense we are lucky we have the time to focus on him and don't have to contend with finding care and help for any other children. If we'd had other children that probably would have impacted our decision.
We only have to find someone to look after the dog and luckily my dad is around to help there :)

OP posts:
Elliss2018 · 03/10/2018 22:30

Wishing you all the best @booandbumpp Cake