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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

aibu to be upset about hospital.

33 replies

mummytobrave · 27/01/2014 21:21

This is a really long story with different parts, sorry if its confusing.

12 week scan everything was normal.

20 week scan in was told the heart looked ad normal and I was referred to a heart specialist at another hospital who said her heart was on the wrong side.
From then I had a heart scan at that hospital every 4 weeks but just for her heart and growth scans and to check everything else at my own hospital every week. So every week the Dr said it seemed to be isolated and her heart is on the right but nothing else and she would be fine.... Fast forward to 8 weeks later after 8 scans I was bk with the heart specialist at other hospital she called there obstetrician in and they discover my daughters liver in her chest which was pushing her heart to the right and rang my Dr to get me booked bk there for a scan asap.
My daughter had congenital diaphrwmic hernia with liver in her chest which came with a 50 percent survival rate.
After 3 scans later diagnosis had changed 3 times from Dr to Dr , one Dr said it was right sided and her lungs were 1.7 which gave daughter a 50 percent chance , then a 2nd Dr 2 days later was left sided with lungs at o.7 which gave her a 15 percent chance of surviving this Dr became my Dr until the end.
I was 29 weeks by now and saw the pedatrician who offered me a termination.

At 33 weeks they then said my daughter may also have a heart problem and if she did there was hardly any chance as both together would condradict each other but said I was at the best hospital for the hernia and liver and that the heart hospital was only 10 minutes away.
I was offered a termination again.

36 weeks I had a scan and was induced as it was thought she stopped growing although they said her chances were better if I made it to 38 but no was induced the nest day.

Her being born well she hadn't stopped growing and came out at 5lb 8 and I didn't have reduced waters either which was the other thing.

During that night I had to stay on the ward baby was stable in Nicu asked if they would ring me if anything happened, next morning in walked in uti where the Dr approached in the middle of the room and said she has the heart coactation and the cdh and she dipped during the night and is on full life support we don't know if she will make it and walked off , I thought it was over. The cdh would determine whether she made it or not. It took 8 days for a bed to be available at the heart hospital where they would do the heart op and the surgeons from my hospital would come and do the surgery on diaphragm and liver at the same time. Those 8 days I thought I would lose my daughter no Dr sat me down to discuss anything and it was awful I was still angry about not being the told the first night that she dipped.
We eventually got to heart hospital at day 9 to be told that in fact daughter didn't have the heart problem and so was taken of the medication which was interfering with her cdh treatment for then last 9 days.

We had to be transfered bk to our original hospital now for the cdh surgery to save my daughters life but they said there were no beds now so waited another 4 dwys .
Finallyn4 days later we were bk and surgery was ready they asked us to wait in the parenting room and we will be called to walk down with daughter to surgery but they forgot and never came and got us

Daughter made it through surgery and 2 days later was of the ventilator which because they said her lungs were so bad in was told it would be months.

Yesterday after 4 weeks , the peadatrician finally spoke to me the one I had when I was pregnant and said the following

Obviously her hernia was less severe than we thought and her lungs were more developed than we thought , and obviously she didn't have the heart coarctaion and was bigger than we thought.

Aibu to be confused ... I look at my daughter scared that they have it wrong again and to think I newrlky terminated 3 weeks befor she was born makes me sick.

Don't get me wrong in know even with just the cdh it was only 50 50 and she has done amazingly well better than anyone expected but I'm so traumitised by the whole thing I'm almost scared to love my daughter.

OP posts:
MsJJones · 27/01/2014 21:29

You poor thing. I am so glad your daughter is doing so well but it sounds like you have been put through the wringer.

I hope you find the fear starts to lift but don't hesitate to talk to someone about how you are feeling if it continues or interferes with your relationship with your daughter.

Have you got good support around?

Norfolknway · 27/01/2014 21:34

Crikey. I've not much to say but you have had a very rough time.

Congratulations on your daughter and I hope she carries on to be as strong as she has been.

It sounds like you've both been marvellous xxxxx

mummytobrave · 27/01/2014 21:39

She is amazing still in Nicu , she will b 4 weeks 2 Moro the fear I had just hasn't passed and I look at her thinking we all nearly gave up on you. Its all a lot to adjust too it is just me and the hospital can be lonely at times too. I can change her nappy and feed her now with bottle but I do look at her at sometimes find it hard to believe she was the baby that I was pregnant with and my anxiety of the hospital. I probably sound insane

OP posts:
anothernumberone · 27/01/2014 21:40

My god how awful. The trouble with some doctors is they see patients as cases and are desensitised to the reality of suffering of the family. It should not have happened that way, someone should have been liaising with you. I think you need help processing all this I would. The whole situation is so traumatic for you. I am very sorry.

MrsBungle · 27/01/2014 21:46

How traumatic for you. I wish you and your baby well, hope she makes a full recovery very soon Thanks

mummytobrave · 27/01/2014 21:46

She is my first so I have nothing to compare, I'm not sure how I am meant to feel... I didn't see her for 12 hours after she was born as she was delivered after again quite a traumatic labour .. And then whisked off. I didn't touch her or hold her until 18 days old I suppose I'm mourning the excitement of a normal pregnancy and newborn experience.

OP posts:
brettgirl2 · 27/01/2014 21:54

I think anyone would be terribly upset. Its hard because I think you are made to feel that you should just be grateful that she's ok and nothing else matters. But of course the reality is that it does which can lead to guilt/ anxiety etc.... Are you able to get counselling of some kind?

DeWe · 27/01/2014 21:55

Congratulations on your baby.

I think though some places do tend to look on the worst side particularly from scans where they can't necessarily tell. Because it's better they're prepared for (e.g.) heart issues when there aren't, than they ignore warning signs and then are caught out. And a heart on the wrong side is (I think from knowing someone with that) unusual to be perfectly normal just on the wrong side.

Dd2 was picked up at the 20 week scan as missing her hand. There is a very small chance (less than 1%) that it can be associated with other things. Because of that, despite the unlikelihood of it, the midwives, consultants etc., do prepare for the worst. And any little issue cause great panic (e.g. I was measuring small for dates for all of my dc, but dd2 was the only one they worried over)

Our hospital offers the chance of being able to go over your labour and stay in hospital with a midwife, who will explain decisions and that sort of thing. Could you ask for that? just talking it through will probably help.

Hope she makes a full recovery and will be home soon.

mummytobrave · 27/01/2014 22:01

Dewe 50 percent of her liver was in her chest even the new Dr was confused how it was missed and the heart hospital was confused how a heart coarctation just dissapears .. If only my did could of told me 4 months ago she would be a fighter lol

Brettgirl2 that's exactly how it feels I had a counsellor at the end of my pregnancy who is meant to see me until daughter is one 4 weeks on and nothing. I have had no offer of support although I have tried to say many times I need to talk about it. They just say I will feel diff when she's home and it will calm down .... I'm scared of her coming home just in case I don't know if she's sick etc
But they just look last me like I'm being stuoid

OP posts:
brettgirl2 · 27/01/2014 22:03

who are 'they'?

Blu · 27/01/2014 22:04

Congratulations, mummytobrave, on the birth of your gorgeous daughter. I'm so pleased she is doing so well.

You have had a terrible time, frightening and upsetting. I can't believe all that time was wasted by taking your dd needlessly to the heart hospital and losing her bed in the hospital she really did need to be in Angry.

I am sure these cases are very complex for the medical teams, but I am sorry that in the focus on your baby your own needs were not cared for.

People who have had very traumatic deliveries often go back for a debrief. I wonder if there is a member of staff at the hospital where she was born that you could speak to abut that? Your mdwife might be a good place to start. Tel her you are feeling traumatised by all that has happened.

During the emergency weeks your baby needed doctors. Now is your time, her, Mummy time, and if you think about it she is just about newborn / 40 weeks age now - you have a lifetime of being her Mummy.

Do ask for help, though. You need some support for you.

WilsonFrickett · 27/01/2014 22:05

Congratulations on your daughter. I completely understand that, frankly, you won't be ble to tell your arse from your elbow at the moment Thanks Do you have a parental advocacy or support group at your hospital? It sounds like you could really use some RL support. Hope dd continues to improve.

brettgirl2 · 27/01/2014 22:07

You really need to find someone who is supportive/ nice. Me I've had some good health visitor experiences (although they are often reviled on mn). You arent stupid at all. Having a newborn is a really anxious time without everything you've been through on top of it.

yaddnbu to feel the way you do.

mummytobrave · 27/01/2014 22:11

Brettgirl my midwife she seems to think it will all just fall in to place ,I'm so greatfu my daughter is OK , I don't want to come across as I dont . I'm just exhausted with everything and feel like when in was pregnant there was all these people and now she is here everyone's dissapeared. I woke up in the middle of the night the other night shaking and couldn't breath at then thought of walking through those hospital corridors.

If anyone watches holby city the Dr jac who just had her baby was the same thing my daughter had.

OP posts:
Blu · 27/01/2014 22:13

Sorry OP, cross posted - you have already asked them about counselling and support.

I would go to your GP.

Also it's very tiring fighting battles and making appointments etc when you are upset.

I didn't have the worries you have had, not anywhere near, and it's a long time ago, but my baby was born with some missing bones, and I was so exhausted by all the discussions, scans different doctors, in my post-natal state, and tried to hold it all together. Then one day when they were telling me we had to stay longer in hospital I just broke down and had a huge shouty cry...and they whisked me into a room on my own and tended to my every need.

You will be able to look after your baby - you really will.

gimcrack · 27/01/2014 22:15

You poor thing, that must have been so frightening.

Congratulations on your baby, and please do ask to speak to s

gimcrack · 27/01/2014 22:16

Or even speak to someone! Apologies, stupid phone.

Take care of yourself, op.

mummytobrave · 27/01/2014 22:18

Thank you blu, I hope your right . I suppose my problem is adjusting to how well she actually . I thought she would never come home and now its like wooow I need to desperate my pregnancy from her

OP posts:
mummytobrave · 27/01/2014 22:19

Seperate the pregnancy from her that was meant to be.

OP posts:
AGoodPirate · 27/01/2014 22:22

Contact Bliss. They've got a helpline, someone will be able to listen to you who understands. They're not just for premature babies.

Congratulations. A wonderful baby girl. :)

CelticPromise · 27/01/2014 22:26

Many congratulations. What a hard time you have had. Have you been in touch with the charity Bliss? Their family support line is really helpful and the forums.

When my boy was in NICU I found it helpful to write a diary, it helped me get my head around things. It may also help you feed back in the future if you feel you can. Sounds like bloody awful communication.

I hope you have your amazing baby home with you soon.

CelticPromise · 27/01/2014 22:28

X post!

Also, I completely understand how you feel about your pregnancy. It's really normal and it gets easier.

Misspixietrix · 27/01/2014 22:31

OP you don't sound Insane at all. You sound like someone who's been to hell and back Flowers. Can't really add anything the others havent said but take care of yourself. Congratulations on your daughter and I hope she continues to thrive. :) I second talking to someone. I think it would help you process all these thoughts etc.

ATruthUniversallyAcknowledged · 27/01/2014 22:32

Firstly, congratulations. I hope you're able to have lots of cuddles with dd now and that - in time - this awful period will become a blurred memory and you'll be too busy enjoying your daughter to worry about it.

I do think you need some proper help to talk this through though. Please ask your gp or midwife to refer you for proper counselling.

WilsonFrickett · 27/01/2014 22:38

Oh yes, Bliss is a great idea.

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