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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
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Original poster
booandbumpp · 28/09/2018 13:56

@MiniCooperLover they said they'd prefer to try and go through labour as the pressure when the baby comes out aids them taking their first breath, which encourages lungs to fill and his heart to function without my help.
Not sure if it's right but they said that the stress and trauma of a c section wouldn't be ideal.
However the first sign of distress on baby's part they would schedule a c section so I'll be having an epidural as the thought of being put under general anaesthetic sounds traumatic and those few minutes after birth with skin to skin contact might be my only time with him without him being on a drip.

OP posts:
Wincher · 28/09/2018 14:00

Gosh it sounds so scary and stressful for you, OP. I assume you have been in touch with the charity Little Hearts Matter? I have a family member with this condition and they have been very involved with this charity over the years. (The child is now a teenager doing really well).

Wellfuckmeinbothears · 28/09/2018 14:53

Oh I’m really sorry to hear all that, I can imagine maternity leave in such a complicated pregnancy just leaves a lot of hours to fill with worrying thoughts. And sciatica is awful, it went almost straight after delivery for me so hope it does for you too.

It sounds positive that they aren’t too concerned about the stomach and it’s great he observed swallowing. Have you ever felt baby having hiccups? My dd was very lazy but I’d often feel her having hiccups which helped put my mind at rest.

5lb is a good weight but obviously you want him to be as strong and sturdy as possible for surgery. My dd was born at 8lb which was a shock, they told me at a scan at 42 weeks, they Day I was induced, she would be less than 5lb and she was going to be breech...well she was 8lb and head first so the scans etc aren’t always very accurate.

I think a natural labour is generally considered to be less stressful and traumatic for babies but that’s good to have planned ahead with the epidural incase he goes into distress.

Will keep you and your little ones in my thoughts Flowers

firedupp · 28/09/2018 15:02

Sending love, OP Thanks

PointlessUsername · 28/09/2018 15:27

Sending Love Op and hoping all goes well with the birth Flowers

ledzepplintooasiseclectic · 02/10/2018 10:54

Hope all goes well with the birthFlowers

flowerythorns · 02/10/2018 11:27

I've just read the full thread. You're doing amazingly op. I wish you all the love in the world.

Thanks
Original poster
booandbumpp · 02/10/2018 16:00

Thank you for all the support and hand holds it does mean a lot.
Had a midwife appointment today and she thinks baby is breach again - did feel him do a big movement on Sunday so it might have been then. Last scan tomorrow to check growth and position so if he is breach induction might be off the cards and it might be a c section after all.
I'm trying to just keep fluid - I don't have any expectations for the birth as I don't see the point any more.
The only thing I do want is as many people - grandparents, aunts, uncles, cousins, etc - to meet him before his first surgery as possible. We'll have a few days between. I want them to be able to see him as a person, rather than a concept, if he does pass away.
I'm scared shitless, I've baked some cookies to distract myself.
Fingers crossed this week goes quickly xx

OP posts:
Wellfuckmeinbothears · 02/10/2018 16:10

Thinking of you Flowers

Gnomesofthegalaxy · 02/10/2018 16:12

Flowers sending love and positive thoughts

mummyhaschangedhername · 02/10/2018 16:24

Massine hugs OP. Such a difficult situation to be in, wishing you and baby all the best of luck. X

BuntyII · 02/10/2018 16:26

Thanks for the update OP. I really enjoyed my section, a birth is a birth but I do hope you get the one you want. You're doing fantastic

SunnySkiesSleepsintheMorning · 02/10/2018 16:29

My friend has a gorgeous 5 year old with HLHS. It’s not been an easy road but her little girl is slowly thriving and going to school and playing with her friends. They said the hoped for the best but planned for the worst - and still do. She found her pregnancy very challenging,

Thinking of you x

HaveYouSeentheWritingontheWall · 02/10/2018 18:15

Thinking of you, making any decisions where HLHS is concerned is so hard since surgery is regarded as palliative, those who don't know what HLHS is or what is involved will not understand the absolute turmoil that you feel. I hope you don't mind me asking but are there any other cardiac anomalies? Flowers

Haworthia · 02/10/2018 18:22

I’m sorry OP. It just isn’t fair. I don’t have any other words Flowers

Original poster
booandbumpp · 02/10/2018 18:37

@HaveYouSeentheWritingontheWall
I got the letter from the cardiac consultant and she says it's Hypoplastic Left Heart but not full HLHS as there is still flow to the left side (apparently it can be a spectrum? - I didn't know this), Aortic stenosis and Hypoplastic aortic arch.
Consultant said it wouldn't have been as bad if he'd had VSD as the blood would have flowed to the left side easier however the duct between the two lower chambers is average sized.
Unless function proves to be better when he's out then it is looking to be the palliative surgeries route for a singular ventricle repair. My partner and I decided we would opt for this over comfort care.
People really don't understand it at all - they think because there is a surgical option then that must be a cure.

OP posts:
RubiksQueen · 02/10/2018 18:44

Only just seen this thread. Thinking of you, OP- my friends' daughter has HLHS and another friend's wife has it. Both have had the Fontan procedure. It is a hard road to walk, but you're not alone. Little Hearts Matter has been mentioned and there's a big online community of heart parents who've been there. Some good blogs out there and people to talk to who've been where you are. I think you are right, those who've not been in a similar position can't really understand (especially those who have had a baby with a slight murmur that resolves itself). Much love to you xx

HaveYouSeentheWritingontheWall · 02/10/2018 20:42

@booandbumpp yes that's what I found people believed, surgery=cure, back when I was going through this the survival rate for all 3 surgeries at the hospital where my baby would have had the surgery was very low. When it was all explained to me at the first meeting with the consultants they said that they wanted to see if there was any growth of the left atrium and ventricle and I had numerous scans over a 3 week period, unfortunately there was no growth and they also discovered 2 additional serious anomalies, (1of which would have led to severe brain damage) they already knew about the fact that our baby's heart was in the wrong place and facing the wrong way. The consultant said that (basically) they couldn't repair something that is not there, surgery would have been palliative and the prognosis was extremely poor.

For those few weeks my head was buried firmly in the sand.

Laiste · 02/10/2018 20:54

My heart goes out to you, OP, your DP, and everyone else who has been through similar FlowersFlowers I wish you love and strength.

Giraffe888 · 02/10/2018 21:13

Sending you lots of love and strength x

NameWithChange · 02/10/2018 21:32

So much love and positive vibes your way. Can't imagine how you are keeping so strong - although I suppose you have no choice. Be kind to yourself OP. Xxx

Quantumblue · 02/10/2018 21:59

Thinking of you OP.

user1473878824 · 03/10/2018 00:08

@booandbumpp I am so sorry I have nothing to help but thinking of you, and wishin you and the baby all of the best. I know that’s so... nothingy but in real life but I’m sending you all the best. X

Whereartthouname · 03/10/2018 00:19

My friends baby had this. She is now a happy healthy 6 month old x

MadisonAvenue · 03/10/2018 00:21

Thinking of you and your baby, hoping for the best for you both Flowers

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