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Baby with heart defect, labour at 22 weeks. Help me prepare **Title edited by MNHQ**

(31 Posts)
whyhastherumgone Sat 04-Nov-17 18:07:41

A severe heart defect was found at our 20 week scan and after much discussion, talk with specialists and research we have made the heartbreaking decision not to continue with the pregnancy.

I will be speaking with the midwife monday to talk to her about where we go from here but wondered if anyone could give me an idea of what to expect/ any questions i should ask or think about and anything i should think about taking with me

Thanks so much.

BlessThisMess Sat 04-Nov-17 18:24:19

I had to face that decision, though about 19 years ago now. I made a different choice, but I remember clearly how impossibly hard it was and each option had valid reasons for it. I just wanted to send you hugs and hand-holding for the awful pain. I hope you have good support round you.

whyhastherumgone Sat 04-Nov-17 18:25:31

Thank you so much it's been such a shock and so hard but we've made what we believe it is ultimately the right choice for us, which is all you can do in this situation isn't it?
I'm just worrying myself about the practicalities now.
Sorry to hear you faced this too.

Yellowheart Sat 04-Nov-17 18:29:46

I've done it.
I really feel for you, life does get easier but you never forget. Someone once said to me that the decision I made was brave- I chose to suffer every day of my life so that my daughter didn't have to suffer for one day.

ARC were amazing- please google them and call them. They were my rock for about 3 years.
In terms of practicalities, make sure you get medication to stop your milk appearing. That's trauma you don't need. All the very best and please pm if you need me x

HollowCity Sat 04-Nov-17 18:30:05

No words of wisdom OP as I've never been in this heartbreaking situation. I'm so sorry you're having to face this. flowers

Chaosandmadness Sat 04-Nov-17 18:30:14

I was faced with the same decision as you but at 27 weeks. It's a hard thing to do and I admire your bravery. The only advice I can give is to be kind to yourself over the next few weeks and months. Listen to what your body and mind needs. I'm sending you lots of hugs

NotThereEileen Sat 04-Nov-17 18:36:58

I've been there OP, 2 years ago now. Please phone ARC, they are excellent.
PM me if you need to talk.

littlechous Sat 04-Nov-17 18:51:48

So sorry OP flowers

sparechange Sat 04-Nov-17 19:42:35

I’m so so sorry.
I was on the same position 2 years ago and it was the toughest thing DH and I have ever been through.

I second speaking to ARC. They were a wonderful organisation and explained everything and what options I would have. It made it easier to prepare, and allowed us to have some time make some choices around the delivery and what would happen afterwards

They also have a great support forum which is only open to people who have been through the same thing and therefore know a bit of what you’re feeling

whyhastherumgone Sat 04-Nov-17 22:20:04

Thank you everyone I will definitely contact ARC. it's so tough, especially as it could be a genetic issue that could affect future pregnancies too sad

Those of you that have been through it too, i'm so sorry to hear this. Did you go on to have successful pregnancies, hope you don't mind me asking.

sparechange Sat 04-Nov-17 22:28:51

If it is a potentially genetic issue, they should test your baby, and then also test you and your DP to clarify.

If it is genetic, you will be offered genetic counselling and then potentially IVF with genetic testing on the NHS to make sure they don’t implant embryos with a condition.

Cross that bridge when you come to it, but in the meantime please know that there are options for you flowers

Chaosandmadness Sat 04-Nov-17 22:31:43

I had a successful pregnancy 2 years later. It was hard going but I had lots of support from the hospital and midwives

chinadoll92 Sat 04-Nov-17 22:39:17

I hope you don’t mind me saying but I think you are on the same fb birth group as me . I’ve been thinking about you since last night .
I think some important practical things to decide are things like do you want to name your baby ? Do you want to hold him or take photos? Do you want a private funeral that you arrange yourself ? Or would you prefer a hospital one ? Most undertakers won’t charge for a baby . My son was cremated and then interred for free , the church even provided a small headstone free of charge .
My little boy didn’t have a heart defect but he had a serious trisomy disorder meaning he was unlikely to make it to full term and even if he did he would have been stillborn or would pass away very soon after birth . We made the decision to end the pregnancy but he was stillborn three days before I was going to be induced .
I wasn’t prepared for my milk coming in . Do ask for medication to stop that . Above all , take things easy , be very gentle on yourselves and take all the time you need to grieve for your loss . This will never feel any easier on you but over time the pain changes , it’s not as sharp .

whyhastherumgone Sun 05-Nov-17 07:55:01

Thanks so much for everyone who has taken the time to post.

@chinadoll92 thank you for posting! of course i don't mind, i will return to the facebook group at some point to give and update just need to get my head around everything.

Yellowheart Mon 06-Nov-17 09:21:20

I had had a successful pregnancy before and I had one after. It was tough but I was so welll looked after.

Genetic tests didn't show up anything for us, it was just one of those awful things. I'm thinking of you x

gingerbreadmam Mon 06-Nov-17 09:31:29

Hi whyas I am so very sorry you have had to face this impossible choice. I have not had exactly the same experience but my dad was diagnosed with a fairly severe form of pffd at our 20wk scan. Doctors thought he would be ok so I continued with the pregnancy however I discovered at 27wks he had died and I was induced two days later.

Practical things I wish I had done in retrospect:
Took something special for him to wear.
I would have had someone knit him a nice hat.
Sorted out a decent camera.
Had in my mind what I wanted to do with him
Stocked up the cupboards so I didn't have to worry about feeding dp and I afterwards

Things that we did do were
Decide on a name
Think about funeral and where we wanted him laid to rest
Decide whether we wanted tests ran on him

He was my first and only. My counsellor kept telling me about this 'mini labour' I would have. I felt very mislead about this and wish I had just been told the truth.

Don't be afraid to take control of your labour and demand anything you need to get through the it.

I wasn't prepared for my emotions immediately after delivery. I was so relieved for the labour to be over it didn't really register that much when I met my son. I wish I had more time with him. I wish I kissed him. I couldn't hold his as he was too fragile but that was to do with our specific circumstances and probably won't be the same for you.

A lovely friend quickly had two small blankets made. I have one and my son has one. That was probably one of the nicest things someone did for us.

I am so very sorry. When this is all over I cannot recommend sands enough for support. You will get lots on here too.

Iamchanging Mon 06-Nov-17 09:49:38

I gave birth to my baby girl 3 weeks ago after having to make the same decision as you but due to severe brain abnormalities. I was 25+4 by the time I actually delivered her as it can be a slow process. It’s not something I want to talk about on a public forum but if you would like to PM me I am happy to talk you though everything that I went through to hopefully prepare you a bit. I’m so sorry that you are having to go through this pain as well x

whyhastherumgone Tue 07-Nov-17 21:42:06

Thank you so much to everyone who has shared their story and i'm so so sorry you've had to experience this too.

@iamchanging so sorry to hear that, i will definitely pm you if you're happy for me too.

Thanks to everyone who has offered pm support, i really appreciate it. A large part of my fear is not knowing what's to come really and although it's been described as a mini labour, i've never had a baby so I don't really know what to expect still.

Miami81 Tue 07-Nov-17 22:01:36

@whyhastherumgone
I am so so sorry that this has happened to you. You have had some good advice on the practical aspects from others. Our baby girl Eilidh was stillborn at 27 weeks (feels like only a minute ago, but actually 5 weeks ago now). I am here for you. Life is so cruel sometimes. My advice is to take any and all support that is offered to you. Read the SANDS website if the medical team haven’t offered all of their info. Be kind to yourselves over the few days ahead.

Miami81 Tue 07-Nov-17 22:16:36

@whyhastherumgone
Sorry just read post again and realised you were looking for specific advice on labour aspect. We found out on the Monday that Eilidh had no heartbeat, they gave me a tablet to stop the placenta working and we were admitted back into the hospital on the Wednesday morning. We had our own room and our own midwife. There was a bit of a wait to get treatment started on the day. Doctors had to administer the first set of pessaries to induce the labour, for me it took two more sets of pessaries to get into full labour. First medicine was administered at 4pm and Eilidh was born at 2.56am. My waters pretty much only broke right at the end of the labour. Pain wise - it was rough, but in a weird way I wanted to experience it as it felt like it would make it more real - I don’t know, I think now that I was punishing myself. My advice is to take all the drugs, they even offered me an epidural which would have meant that I didn’t feel the pain.
My regret is that I didn’t see her straight away - I was a wimp and I was scared and I can’t take that back now. Take all the time you can when your baby is here. Let me know if there is any other questions you have.

gingerbreadmam Tue 07-Nov-17 22:25:10

I started with paracetamol then the next painkillers up from that then gas and air. Gas and air was amazing at first but soon stopped feeling the effects. I eventually moved onto morphine about 20mins before he was born.

I did get to the point I wanted something else but luckily he came not long after the morphine drip had started. I wish I had had the morphine sooner as I felt like it didn't do anything.

You will be fine through the labour. It's tough but if anything it's a distraction.

Feel free to pm me if you would prefer.

I hope are finding away through these awful days.

whyhastherumgone Fri 10-Nov-17 08:35:41

Thank you, i'm going in tomorrow. Really hoping it will be over with quickly but I know it's likely to take a while.

Just wondered - for anyone who had to go through this around 20 weeks - how bad the pain was?

I'm so sorry to everyone who has gone through this and appreciate so much you taking the time to reply.

gingerbreadmam Fri 10-Nov-17 10:51:40

According to my notes I was in.labour just over 2 hours.

From what I felt was the first real pain to baby arriving I would have said about 7 hours.

Honestly, and I have nothing to compare it to, I would say it is labour.

Gas and air and morphine are the way to go. Don't be afraid to ask for it when you feel you need it.

It hurts but it's not the end of the world. It certainly didn't put me off but I was glad when it was over.

I hope tomorrow goes as smoothly as possible for you and you get some quality time to spend with your baby.

itsgoingtoofast Fri 10-Nov-17 12:05:39

I am so so sorry to hear this. I know you from the miscarriage thread that I’ve been on for the past few months. Im sorry I don’t have any practical advice. Unfortunately my close family has experienced a similar loss. They had a memorial service after he was born which I think helped them through a little. It is so personal though. And so unbelievably hard.

Sending you strength, and I’ll be thinking of you tomorrow and in the coming weeks flowers

HenryBiggleswade Fri 10-Nov-17 12:19:43

Oh rum

I have no advice but just wanted to send you lots of love, I’ll be thinking of you both tomorrow. (Sally/FB)

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