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

[booandbumpp]

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?

I have nothing to offer other than my thoughts and a gentle

You shouldn’t be going through this, it isn’t fair

Thank you for the supportive messages.
@Whereartthouname I know you mean to be kind but these sorts of messages don't really help me personally. Your friends baby "has" this CHD, if it is the same as what my baby has been diagnosed with. There is no cure - he will have it forever and it will impact his life and his life expectancy will be significantly reduced. And even though some babies do survive the three staged surgery - which your friends baby will be due to have the second stage soon - the surgeries have only a 60% survival rate so there is a good chance my baby won't be as lucky as your friend. I'm sorry - I know the message was sent in a kind and hopeful way but it feels like a way to sweep how I am feeling under the carpet as if it's an over reaction
Thank you x

All the (((((Madd soft Hugs))))))) booandbumpp.

All the ((((((Hugs)))

Sorry didnt mean to offend. Wish you all the best. My little god daughter has had 3 heart surguries and will need more throughtout her life to replace the valves. I didnt mean to be insensitive. I just remember from my own pregnancy i had a life threatning condition which resulted in the loss of my uterus at birth it comforted me to hear stories of women who survived this. Not trying to compare or anything as i know its a totally differnt situation just wanted you to know why i posted my comment. I wish you all the best and send prayers x

Sending love OP xx

HLHS (Hypoplastic Left Heart Syndrome) occurs when the Left side of the heart fails to develop normally or fails to develop at all, there is often other anomalies associated with the Left side of the heart that also fail to develop normally. Essentially it means that the Left heart cannot pump oxygenated blood around the body, surgery must be performed before the ductus arteriosus closes, usually at 2 days post birth, surgery is carried out in 3 stages, at 2 days old, at a few months old and then at around 5 years. The 3 surgeries is to make the right side of the Heart do the the jobs of both sides, Since Hypoplastic Left Heart Syndrome cannot be cured surgery is deemed to be palliative as all it does is prolong life.

It is not comparable to other forms of CHD that can be cured.
for booandbumpp
for anyone who is dealing with other forms of CHD.

It is good to hear from the other poster who has indirect experience of HLHS for you also. Thank you for sharing.

Survival rate has increased since I was pregnant and going through this turmoil.

@Whereartthouname thank you - sorry I couldn't sleep last night and was feeling very sensitive. I've just had a lot of people say "oh my hairdressers baby had that and they're absolutely fine now" and it turns out they had a very curable CHD so it wasn't the same. Thank you for the thoughts and sorry to hear about your difficult time xx

OP I have nothing useful to say, I just wanted to say that I’m so sorry you are having to go through this, and wishing hard for the best possible outcome for you and the baby 🤞🏻🤞🏻🤞🏻

@HaveYouSeentheWritingontheWall I'm sorry you went through this too - but a selfish part of me is glad you understand.
Explaining to people the severity of it, and how difficult it's been, and how scared I am - which is exhausting on its own - for them to respond with "oh it's amazing what doctors can do these days" or "so and sos baby was sick with something else and they're fine now babies are strong" is so... annoying. I can't think of another word for it. I know it's because people don't want to think about the fact that babies do die - but they do die every day.
All it does is seems to try and invalidate the way that I'm feeling when people try to brush it aside.

I have a scan today. Midwife think baby is breach again so induction might be off the cards and we might have to go for c section. Glad I gave up all hope of the birth I wanted! X

Just realised this thread had a lot more posts than I thought. Apologies

Sending you much love ans support OP. One day at a time

Oh op. I just read through your thread and could not imagine what you’re going through at all.

How are you doing? Have you the support of family? How’s your dp coping?

The big thing after the birth is to have people there to listen. It’ll be okay to get angry and upset. But you’ll both need support. However private it is, you’ll need people to listen to you each, to vent to. And it’ll be okay to vent. Be there for each other, and have people there for you both.

If you’re going to be in hospital with him for a while, it may be good to write little letters to look back on to help you through the process, whatever the outcome. I was given a letters to my daughter journal to write in as a present but I think it could be useful for those days where you just want to put down your feelings. This is one of the ones you can get
www.pipandruby.com/product-page/letters-to-you

I always find writing things down, helps me out. And it’s not something you have to show others. It’s gets them down.

In your hospital bag could you bring an instax camera so you have some instant photos. And they’re with you at all times, not just on the phone. Something to capture those moments that you always want to have. So if he’s in surgery, you have a picture with you to hold.

Make sure you take this time to just relax, get into bed and just watch box sets. You’re coming across very strong and it seems like you’ve done your research so going into this with a range of viewpoints which, from experience of knowing people who’ve had similar, is the right thing to do.

Sending you all the hugs.

I see Patches has been mentioned earlier on in the thread - the facebook group is a very supportive place - www.facebook.com/groups/108795909224199/

Thinking of you and hope your scan goes well

Hi, as a former NICU Mum (I am assuming your baby will be there for a bit as when we were there, there were two other babies with HLHS too), a few tips. Keep a diary. It helps with questions during ward rounds and is a lovely memento. Don’t feel shy about asking the nurses what you can do for the baby. You can and should be able to do everything barring a medical procedure. If your baby will be NG fed then you can still do the feeds etc. We had a stack of books under his incubator/cot and read to him all the time. Take lots of hand cream. The NICU is dry. You might need to pump. If you do, ask if you can pump bedside. Ask the lactation consultant for pumping and latching help. Befriend other Mums and Dads in the NICU. They are the ONLY people I found who ‘got it’. We are friends with several nearly two years on.

I will not patronise. I get it. I had an extremely premature baby born on the edge of viability and I found all the ‘my cousin’s colleague’s MIL’s nephew was born at X weeks and is going to Oxbridge’ very very very unhelpful.

Nothing I could say could help, but I just wanted you to know that I feel for what you're going through. It's very difficult to stay hopeful when you've had such a bad prognosis (that I can understand!), so please don't let other people make you feel bad for the way you're feeling. It's perfectly normal to feel hopeless.

I wish you strength and I hope things are going as well as is possible.

Wishing you strength OP.

Are you still scheduled to have the baby next Sunday even with the C section?

I hope you are able to get some rest and get some let up from the sickness.

OP I've read all your posts on this thread, sorry if I've missed it but I just wanted to ask one thing.

Is it definite that his life expectancy will be short? Or will it be a case of maybe/possibly but won't know for sure until he is born?

The reason I ask is because my baby has a heart issue (I'm 28 weeks) and although it isn't as severe as your little one, they have said they don't know the severity of my baby's heart condition until he is born.

I guess I was just wondering if you guys had any hope?

Did you have an amniocentesis to rule out any chromosome issues?
They offered this to me but I refused because it was just too late in the pregnancy for me to make "a decision" by that point.

I'm so sorry you're having to go through this.

@CrabbityRabbit thank you. I find out today - I have a consultant scan at FMU at 3.50 so they'll confirm if he's breach and ring other hospital to make arrangements if he is I'm assuming. They may delay it until next week, but he needs to come out soon as the placenta is a worry.
Stuck between wanting pregnancy to be over (can't walk, throwing up still, want my body back etc) and wanting him in there for as long as possible as that's where he's safe. Even the midwife commented on how strong his heartbeat was while he was in there.
Bought some cute nappies today. Thought he'd at least definitely get to wear them after. They have foxes 🦊 on the bum so even though they were double the price of the normal nappies I decided to get them

@ButAIBUtho if we go down the palliative surgery route which makes his heart a single ventricle (right side pumping to both lungs and rest of body) then even if he survived all 3 surgeries he would have a shortened life expectancy of 15 - 20 years old. Generally it is heart failure as half of the muscle is doing all of the work.
Obviously there are cases of people living longer - I've been on the Little Hearts Matter site and seen posts from 40 year olds - but it's generally expected a shortened life expectancy, yes.
There are also risks of emphysema, and stroke.
I did have an amnio - technically I could still get a termination now if I wanted to so we decided that a severe chromosome issue where he was not likely to be eligible for the surgery would be the only reason I'd terminate (think Pataus and digeorge's they wouldn't operate) - and everything came back "normal" x

I'm so sorry you're having to go through this, OP. You're a fantastic mum though. Wishing you strength and courage.

With regards to if we have hope - I would love to let myself slip into hope that he will be absolutely fine but I really have to bring myself back down to Earth. Of course I hope that I get to mother him till I die and he will lead a long and happy life.

The facts are that the best case scenario is still open heart surgery, where his heart is stopped, he's put on bypass, and then they restart his heart. It's all very risky. There is a very very very slim chance that it will be a bi ventricular repair which is curative (only potentially available because the left side of the heart still has a small amount of blood flow). If I let myself cling to this hope then I worry I won't enjoy they time I do get with him because I will be distracted by the grief of that news.

So, I hope that I get to experience little things - changing his nappy, putting him in cute clothes, bathing him. I hope I get to see him open his eyes. I hope that mine and my partners family get to meet him. I hope I get to bring him home, even if it isn't for very long.
Things I don't hope for, because I know that they are going to happen, are that I will kiss him, cuddle him, hold him, my family will know him, love him, my friends will at least see pictures of him, and I will talk about him. I will get to be a mother. My partner will get to be a father.

I have never been so touched by a post before. I wish you and partner love and strength x

Much love x