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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
Munchyseeds · 18/09/2018 17:47

So glad you went and things are ok at the mo

YeTalkShiteHen · 18/09/2018 17:52

Glad you’re home OP, hope you get a good night’s sleep!

sliceofcheese · 18/09/2018 19:34

I hope you can get some rest and things go as well as they can. It's always so difficult out in circumstances like these to know what to say. Thanks

ChasedByBees · 18/09/2018 20:17

I’m glad you went. You wouldn’t have been able to rest wondering if everything was ok anyway.

Greggers2017 · 18/09/2018 20:23

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Original poster
booandbumpp · 18/09/2018 21:04

@Greggers2017 I did go.
Sorry your cousins baby has the same condition - I assuming you're referring to HLHS. If that's the case you know it's devastating news. You'll know that I am still being given the option of termination. You'll know how I have to visit a hospice to prepare myself for if the surgery isn't an option. You'll know of the month stay in hospital that I have to face once my baby's born, due to the first of 3 surgeries. You'll know that the surgeries have a 60% survival rate. You'll know that even if my baby does survive that he will be on blood thinners for his life, be at high risk of stroke, disabilities and other complications. You'll also know that even if he does survive he will have a life expectancy of 15 - 20 years old.
I may be being ridiculous but I am having to come to terms with a very difficult diagnosis. I hope you supported your cousin with kinder words when she was going through this because trying to make it seem like anything other than devastating is disgusting

OP posts:
Stickystickystick · 18/09/2018 21:08

Keep strong OP

NameChangeCuddleBums · 18/09/2018 21:17

Flowers for you and best wishes for you and your baby.

Littleoakhorn · 18/09/2018 21:20

Flowers I’m so sorry Boo. I hope you get a decent night’s rest.

GaspingGekko · 18/09/2018 21:20

OP try not to let the negative comments get to you. They can't understand the chaos that your thoughts must be at this point.
We were offered a medically justified termination at 35 weeks after something was found on the third trimester ultrasound.
You're trying to take in and come to terms with terrible news at what should be a happy time. No-one can truly understand unless they've been there.

Once you get through the madness of this time you'll find you are stronger than you could imagine.

Flowers I hope for the best for you and your baby.

steppemum · 18/09/2018 21:27

booandbump - so sorry you are going through this.

I wanted to give you some hope.
My niece was born with a severe heart defect. Massive op in first few weeks, which caused a stroke. First 6 months in hospital, and 2 open heart surgeries in her first 5 years.

Despite that she is amazing, has been so full of life and zest, even when wheelchair dependent due to heart functioning poorly as she got older.
Last year she had a heart transplant aged 10, and has a new lease of life, literally, she has been given another 20 years.

I know the heartache my SIL and BIL went through as they came to terms with the diagnosis and all it meant for them, and the strain as they lived as a family at the hospital, with a toddler in tow too.
But I also know that life has been amazing with my DN, and every time I look at her I am awed by how far she has come since those first few dark days after she was born.

Flowers Flowers

autumn18 · 18/09/2018 21:40

No words OP Thanks a very very difficult situation indeed.

Original poster
booandbumpp · 18/09/2018 22:07

Thank you for your messages, esp @steppemum and @GaspingGekko x

OP posts:
civicxx · 18/09/2018 22:23

Jesus.
Go to the hospital.

numptynuts · 18/09/2018 22:31

Can you please stay on here OP for continued support if you can?

Thinking of you Thanks

tosleepallday · 18/09/2018 22:33

Why don't people read the full thread or at least the updates from the OP?

peachgreen · 18/09/2018 22:36

@booandbumpp I'm so sorry that you've received some unkind comments here. You are in an impossibly hard situation and you deserve nothing but kindness and empathy. I will be thinking of you Thanks

Babybearsporij · 18/09/2018 22:47

booandbumpp I'm glad you went. Flowers You did the right thing.

I also know someone who had HLHS and he is a very much alive weightlifting young man now. It doesn't have to have a terrible outcome. Try and rest up & take it easy between now and the birth / surgeries etc.

JSLI · 18/09/2018 23:06

My 13 year old daughter was born with a heart condition. She had surgery when she was one and then again at two. We are currently waiting for a date for her next surgery.

There are a few support groups on Facebook for children with heart conditions.

Look up Little Hearts Matter Member Group and PATCHES family support group.

Wellfuckmeinbothears · 19/09/2018 17:17

My dd is now 15 but she was born with a CHD called tetralogy of fallouts. I didn’t know until she was born. She has had 6 lots of open heart surgery, first at days old then 3 more in her first year. One at 4 and one at 6 and will need another once she’s fully grown. It was horrific and scary but she is now a totally normal teen! I was told to prepare for the worst, looked at a hospice etc so I do understand to a certain degree what you’re going through. It’s a tough road ahead but there is hope x

Wellfuckmeinbothears · 19/09/2018 17:18

*fallots not fallouts!

mummymeister · 19/09/2018 17:29

OP - please make contact with the childrens heart charity called HeartLine. they will be able to offer you a tremendous amount of support with realistic expectations of what to expect and how things may go. I could not have coped without them. One of my children has a very rare heart condition and we were told that they would live possibly a year that there was a lifetime of surgeries and drugs and all I heard was grim, grim and grim. HeartLine stepped in and did a lot of handholding with lots of facts. The diagnosis was the worst day of my life - I feel sick thinking back to it. But what you need is lots and lots of real life support. not just from friends and family but from charities, experts etc. your job is irrelevant right now, go off sick if you need to. Unless you have been through this stress its hard to believe how your whole system is affected by it. Put yourself and your baby first and do what you need to to get through the next few weeks and remember that sometimes there are glimmers of hope. thinking of you.

Original poster
booandbumpp · 19/09/2018 18:04

Just a quick update from appointments today, because apparently my situation needs to just get worse:
Was at Leeds hospital for 6 hours today. 2 appointments. The cardiology appointment was much the same, there's no more scans until birth. At FMU they’re telling us There’s too much fluid around baby. It’s a sign of either gestational diabetes, a chromosome issue I haven’t been tested for, a virus, or a problem with baby swallowing - the oesophagus may not be connecting with the stomach and it might be another operation when he’s out. I can’t even being to process it again. It’s ridiculous. Induction booked for w/c 8th October. Weekly scan visits. At risk for early labour too. He's still small not put on weight in the last week apparently.
2 more days at work so I don't really need to go off sick, just need to get to Saturday.
Thank you for the charities suggestions I will definitely look at them x

OP posts:
MatildaTheCat · 19/09/2018 18:19

Just sending love and strength to you and your family. One day at a time. Flowers

Wonkydonkey44 · 19/09/2018 18:26

Sending much love to you and your little one ❤️