Spina bifida have chosen late tmor. Which method

[Worried9months]

I have chosen very sadly to have a late termination. My baby shows severe brain defect as well as spinal.

I feel very strongly that I want a medical termination as I've had 2 d&c in the pAst.

Does anyone know if this is possible or had experience of it?

I'm sorry you're facing this. I think the vast majority of terminations at post 16 weeks are medical. In terminations close to viability, they sometimes have to do a separate procedure to stop the heart before induction of labour.

Worried, I am so sorry to hear this. It is a heartbreaking decision to have to make, but you are protecting your baby from suffering so it is a selfless decision too xxx

How many weeks are you? I sadly lost my own baby at 24 weeks and therefore know of many people who have had to have a termination of pregnancy for medical reasons through SANDS. If the baby would survive labour they tend to use a tiny needle to inject the baby's heart with something to stop their heart before labour and then induce.

My baby had already died, but the induction involved taking little pills to start labour. It took 3 for mine to start and they put them several hours apart. I asked for lots of pain relief (I felt like things were bad enough without having all the pain). When I started having contractions they brought the morphine. I would recommend that if you do have to go through labour because it takes the edge off emotionally too - leaves you feeling kind of cosy and sleepy which helped me to cope.

I would honestly consider seeing your baby if you are anywhere near viability.

I am so sorry that this is happening to you xxx

H
So sorry to hear about your loss. It's the most devastating thing I've ever been through.

How have you coped since?

I am nearly 20 weeks.

It was almost 9 years ago. My first son now has a younger sister and brother too. I am still incredibly sad about my son, but over time I sort of started to settle into a new 'normal'. I agree - it's the single thing that has affected me the most in my whole life.

At 20 weeks you will have a very tiny baby but a baby nontheless. They will be beautiful. It might seem scary now but meeting him/her, holding them in a blanket especially for them and taking photographs if you feel strong enough, will help you to not have regrets. I only have 3 polaroids taken by the midwife and I regret this - camera phones weren't the quality they are now and we just weren't thinking straight. It means a lot to have things to show he existed and was here. Every year on his birthday we mark the occasion by making a cake and having a picnic, releasing balloons.

We had a funeral provided free but were given the chance to pay for our own. They do have funerals for earlier gestation babies as the one before us was for a 16 week baby. It was only myself and DP, but that was our choice at the time. His ashes are on our fireplace in a little urn as I could never bear to part with them.

Have a look on the SANDS forum if you as there are others who have been through similar there. TFMR is often misunderstood by those who have no experience but you will find support there x I went onto the SANDS forum daily for 5 years and it was a massive support to me. I am still in touch with many many friends I met there.

Have you got RL support with you?

I am so sorry again xxx

Hi thanks for your response.

Do you mind if I ask what your baby's medical condition was?

I'm going back and forward with what Ifs and should I?

I'm so scared to go through this either way :(

I'm scared about falling pregnant again as well as going through something similar. The worries are killing me right now

It was pre eclampsia and HELLP syndrome that caused my baby to be stillborn. I was in the hospital and there was a HB but later on that night he had gone . My BP was very high and my platelets were dangerously low. It took 2 days after they had stabilised me enough to give birth and they induced me. I remember waking up about 7pm with cramps coming and going which got more and more severe and closer together. They came with the morphine when they were closer together and it did take the pain away totally have to say. A lot of hospitals have a bereavement suite where you can be quiet and spend time with your baby and other family in peace but I was in a HDU room for most of the time as I was ill.
Thoughts are with you xx
As far as getting pregnant again goes I would only say that although my other two children were also complicated pregnancies and the same happened withy son only later (he was 2 months early) they were worth it definitely. But pregnancy after such a loss is never going to be the same as before and I was very scared it would happen again.

Thank u. I hope I didn't offend or upset you by asking about your child.

It's so hard to go through this I wouldn't wish it on anyone but it does help somewhat to know others have been through this and pulled through it so thank u so much for sharing this with me.

I have so many questions to ask them to make an informed decision.

My dear friend went through this at 20 weeks. It was utterly heartbreaking, but it was the right decision for her and her DH.

I think what dontputyourfinger has written is absolutely spot on:

It is a heartbreaking decision to have to make, but you are protecting your baby from suffering so it is a selfless decision too

I truly believe it is a selfless decision.

Be kind to yourself, and I hope this dark and difficult times gives way to better times soon, xx

I have no option but to have the labour induction.

Probably much more emotionally harder.

How do people get through this

You will never offend me by asking about him Worried, it's the ones who forget he ever existed that hurt me.
He or she will still be your baby. You will still get to meet them and see what they looked like and I honestly think that emotionally in the long term it will be just as hard either way.
Have you got support to go with you?
As well as the SANDS forum there is also a Facebook group called SANDS and the people on there are very lovely and lots have been through similar so you might want to go there too xx

Hi worried.

First to answer your easier question.

In order to reduced the chances of another baby having spina bifida you should start taking folic acid 3 months before you try to conceive. Speak to your doctor and you will be prescribed a much larger dose than is in the standard pregnancy vitamins.

Have you spoke to the spina bifida association
Shine (England) www.shinecharity.org.uk/contact-us
tel:01733 555988

Ssba (Scotland) www.ssba.org.uk
tel:08459 111112

They will be able to help you understand what the drs are telling you and what the real life implications of that are.

My dd(2) has spina bifida at level L4/5 I was told she would be unlikely to walk or be continent and that there was an 80% chance she would develop hydrocephalus and associated learning difficulties.

This is far from the truth and due to our association with the ssba I now know lots of kids who are affected in lots of ways.

I won't bombard you with information you don't need. I know how difficult this time is. If you want to talk pm me and I'll send you my number or call the charities above.

Don't suffer alone, gather all the information and then make a decision based on what you think you would want of you were your baby.

I'm sorry your going through this, I well remember the bump clutching terror/grief as medical professionals reigned down prophesies of doom

Big hug

How are you today Worried?

Worried sorry to hear you are going through this.

I had a miscarriage at 20 weeks. I definitely recommend taking as much morphine as you are offered. I don't know if this is your first pregnancy but labour at 20 weeks can be like a labour at full term.

Hi all

Thanks for your messages.

Things went ok. Labour was long and tiring but I'm so glad I got to see him and spend some time with him.

I felt weirdly relieved after he was born and know I made the right decision for him. It was all very peaceful.

We have little hand and footprints and some lovely photographs

Thanks for coming back to us. I am so sorry that you have had to go through this but I am glad that you felt a sense of peace. Xxxx
My thoughts are with you .

I'm having a bad night tonight :( I feel so sad he's gone and although I was keen to try again I feel didn't now that I'm scared to. Nothing will ever replace him and I'm scared that someone else feels that he will be :(

How did you find the first few weeks

The first few weeks were tough as I lived far away from family and a lot of my friends and colleagues were also heavily pregnant. Be prepared though for your grief not to be linear but to have ups and downs over the next few months and years. If you haven't already, do try the SANDS forum. There will be lots of other parents in a similar position and they were a lifeline for me. It is www.sandsforum.org I believe xxx. I didn't look it up for 6 months as I thought they wouldn't help but I wish I had sooner. Be kind to yourself and don't let any well-meaning people try to tell you how to feel. There is a lot of misunderstanding around baby loss and some people might disappoint you with their lack of support whereas others you hadn't counted on to be there might surprise you.

Nothing will ever replace your little boy but you won't be trying to replace him but having a brother or sister for him in the future. It is terrifying contemplating the future but my subsequent children have helped me to heal and have given me a link to their brother. There was a good chance that the same would happen again in a subsequent pregnancy - it did happen the next time (DS was premature but very well otherwise), but no sign of it the third time. Are the chances of Spina Bifida in a subsequent pregnancy more likely? A good hospital should arrange an appointment with you to discuss everything and plan for the future so that you know.

I really hope that any of this is helpful but wanted you to know I am here x

Hi DontputyourfingerinthejellyNel

Please let me start by saying talking to you has really helped me this last week. Just wanted you to know I appreciate your responses.

There is a higher chance of spina bifida in subsequent pregnancies around 5%. I have to take strong folic acid for 3 months before ttc again which I have already started.

I will look up the sands forum. We were given a very lovely sands memory box from the hospital which I will treasure.

He will be cremated next week and we will get to keep his ashes

Thanks for getting back to me Worried I am sorry - have only just seen this. I am so glad that my responses helped in some way. I know that the best thing for me was finding others who had also lost a baby. I am still in touch with many of the people that I met in the early months and years.

I hope you are being kind to yourself and being taken care of.