23 weeks and having to choose termination if you can call it choice!!

(51 Posts)
zen1980 Fri 19-Apr-13 16:28:23

I'm 23 weeks pregnant and at my 20wrrk scan (done at 21 weeks) they said the baby had dilated kidneys however, did happen occasionally and that it was nothing to worry about. To be safe they arranged a scan with a renal consultant today. Today we could not have got given more worse news (to us). The baby has dysplastic kidney disease which it has in both kidneys, one kidney is huge an not functioning which you can live with just one kidney. However, the consultant was pretty sure cysts where forming in the other kidney and the fluid around the baby was Reducing. This would make the baby at full term incompatible with life.
They now have to decide whether the hospital will stop her heart as they are often bound to see if she will survive once born. If we carried on with the pregnancy here is a less than 10% chance she would survive an we would watch her pass away.
We have a 3 year old who is excited beyond belief about her sister an what do I say? Before her we had a mmc an that was bad enough but this? I feel my baby kicking as I type an can not think of what is going to get me through this. My Dh is so supportive but I don't think I can go on the pain is too much knowing our plans and hope have just been Squashed again.
I lost my mum quite soon after my daughter was born an that was hard enough but this....
Can anyone help??

PiratePanda Fri 19-Apr-13 16:34:59

I'm so sorry, that's so sad. I don't have any experience or anything to say that could help but I didn't want to read and run. Hope someone else will be along soon who can advise.

:-(

Trazzletoes Bosnia-Herzegovina Fri 19-Apr-13 16:37:00

Xxxxxxxxxxxxxxx

JakeBullet Fri 19-Apr-13 16:37:27

Oh I am so sorry to read this sad

I haven't been through your situation but I know there are plenty of folk here who have and will support you.

There is an organisation called ARC (Antenatal Results and Choices in pregnancy who run a helpline and also have a forum I believe too.

Is there any support on offer from the hospital?

JakeBullet Fri 19-Apr-13 16:38:33

The ARC website is here

ShootingStarsss Fri 19-Apr-13 16:40:09

I don't have any advice, I am so sorry your in this heart breaking situation, here is a hug x xhmm

zen1980 Fri 19-Apr-13 16:45:24

Thank you i will look into it, I couldn't take it in at the hospital and kind of ran out sad my husband has since phones them back we are going back on Monday at 10am.

chipmonkey Fri 19-Apr-13 16:52:58

zen, I am so very sorry you have received such bad news. I lost my daughter to SIDS but for us it was totally unexpected, she had been very premature but seemed healthy when we took her home. There are lots of Mums here who have had to make a dreadful choice for their baby. I suppose the only thing I would say is that on the last day of my daughter's life we did try to resuscitate her. Unfortunately it didn't work and eventually a decision had to be made to turn off the machines that were keeping her alive. I held her as she took her last breaths. It was truly terrible but at the same time, I'm glad I did get to hold her while she was still breathing and had gotten to know her, and see her with her eyes open, got to hear her cry. I do think a lot of Mums whose babies were born sleeping do find it hard that they never got to know the colour of their baby's eyes, for example. But it's truly awful either way, to be perfectly honest, and only you can know what the right decision is for you, your baby and your family. And for us, there really was no choice, our daughter had already effectivly died, so although I know the pain of losing a baby, I never had to make a decision about a very ill baby.
I will be thinking of you and will watch your thread xxxx

zen1980 Fri 19-Apr-13 17:38:03

The problem is that I don't feel we could carry in for another 15 weeks then the baby be in intensive care ( I know what this is like as my daughter was in there for a month when born) and then have to watch her pass, but worse still have to explain to my daughter her sister isn't coming home. The doubt I have really is always a what if but the consultant was pretty certain the baby would die an could do before whilst in me if the fluid is too low or none at all. I'm so confused.

ShanksYoni Fri 19-Apr-13 17:39:25

I have nothing to add in terms of knowledge, but I just wanted to say you are in my thoughts.

chipmonkey Fri 19-Apr-13 18:06:30

zen, I can see exactly where you're coming from and my own dd was in NICU as well but at least at that time we thought we had a baby who was doing well. It must be horrendous being there and knowing that your baby will pass away there. Also, when our dd was rushed to hospital when we realised she wasn't breathing, by the time we got there and she had been examined, the A+E consultant told us she had a 6% chance of living. What he actually meant, we realised afterwards was that she would not live. I think giving us that 6% was a way of telling us that she would die IYKWIM. But letting us know the worst little by little.
But yes, that 10% for you is agonising. I know I held on to our 6% until it became clear that it wasn't really even 6%. Would it help to see another consultant, to have the diagnosis confirmed? So that if you do decide to terminate, you know that you absolutely did the right thing?

Chooster Fri 19-Apr-13 18:24:35

Hi, I had a similar situation. My second son was diagnosed with a life threatening symdrome at 20 wk scan. It left his joints all fused and he had fluid on his brain. We were told they were fairly certain he wouldnt survive birth and would likely die before that. We felt the best decision was to terminate. We also had an older child and we couldnt live with the uncertainty of when ds2 would die and how to cope with ds1's questions. I had the termination at 22 weeks and its was all heartbreaking and emotionally hard. I can answer any questions you have about the process?

The post mortem confirmed the diagnosis and confirmed his illness was not compatible with life. He never would havetaken a breath. Its an awful position to be in and has so many implications for the family. So sorry this has happened to you x

mrspaddy Fri 19-Apr-13 18:27:20

I wish I could help but I have no advise.. I just want to send to hugs.. look after yourself x

zen1980 Fri 19-Apr-13 19:13:45

Thank you all for your thoughts. To be honest I don't know how ill get through to at least Monday let alone the rest of next week, but I know deep down I have no option! I will be meeting another consultant on Monday and take it from there of the next steps. They are not completley opposed yet at putting me to sleep so we will see.

samsmother Fri 19-Apr-13 22:05:26

Zen, I'm so sorry to hear your scan results. i know its not the same but my ds was diagnosed with MDK (multi cystic displastic kidney) at my 20wk scan so i have an understanding of the worry when being told there is something wrong with your baby. How certain are they re other kidney?Can they rescan in a couple more weeks to see whether Fluid is still reducing before you make your choices? I know if there was the slightest chance that there could be a different outcome I would be pushing for all monitoring available sorry couldn't be more helpful x

Christelle2207 Sat 20-Apr-13 17:44:19

So sorry to hear this. I was going to suggest getting a second opinion but it looks like that is what you are doing. There is no right thing to do here and having a child already must make it so much harder.
Not expecting it to help at all but a friend of mine had to make a similar horrible decision, later on than you. It was definitely the hardest thing she's ever had to go through but she did go on to have two other healthy children and they all talk about and have in their thoughts forever the big sister they never knew.
Hugs x

manitz Sat 20-Apr-13 18:04:51

hi I remember being in this position in my 3rd pregnancy. we had our anomaly scan at 23 weeks and found out the baby had half a heart. her projected outcome was not good. I had a termination at 25/26 weeks after some botched hospital administration. I had two other dds who were 4 and 2 at the time. I had to explain to them that the baby didnt have all her parts to live at that age they seemed to be very matter of fact about it and they helped me recover. I bought them necklaces from their sister and a ring for me to remember her. I was entitled to maternity leave and took a year, I felt it was a present from her that i could spend a year with her sisters.

I also lost my sister when I was 14 and although the termination was horrendous at the time, it was quicker for me to get over than the death of a loved one who I knew. I suspect that wont help you at the moment as I remember diagnosis and having to make a decision as the worst part of the process. I have since had two healthy boys.

It helped me to keep the diagnosis and all the medical reports as I continued to doubt whether they were right following her birth. Looking at the reports reminded me that my choice was not between a life and a death, but that her life would have been short and full of suffering. I was offered comfort care which is where she would have been born and allowed to die (within a week with this condition) I wanted to meet her but ultimately I felt that the older she was when she died the more she would be aware and so the more she would suffer.

I don't know anything about your diagnosis and dont want to influence you but wanted to tell you my experience. Feel free to pm me if you want. I found box sets helped a bit during the limbo wait. xx

I am so sorry you are going through this. xx

JuliaScurr Sat 20-Apr-13 18:18:30

XXX
<3
terrible situation
My aunt went through something similar

thinking of you

chipmonkey Mon 22-Apr-13 14:34:42

Thinking of you, zen xx

samsmother Mon 22-Apr-13 17:26:35

Me too X

zen1980 Mon 22-Apr-13 19:31:22

So we went back to hospital today and they confirmed everything, they have also said that I am unable to be put to sleep so I have to deliver. We decided to start the process today and I have to go back on weds to be induced. Ironically I can't have full doses as I have has a section before. I feel so sick with nerves an for my 3 year old I hate to be away from her. If anyone has any ideas how to get through the rest if the week please advise.

Alibabaandthe40nappies Mon 22-Apr-13 19:38:59

OP I have no advice but my heart goes out to you. Be kind to yourself x

ghislaine Mon 22-Apr-13 20:10:09

Oh Zen, what a heartbreaking time for you and your family.

On the "termination for abnormalities" thread you posted on, there are some stories of medical terminations at around your stage of pregnancy and there are two posters at least (Suemays and Louzie) who terminated for kidney abnormalities at around 22/23 weeks. I don't know if it would help to read their stories.

Please, if you have any questions, raise them here or in that thread. There are lots of us who have sadly had to end our wanted pregnancies and can hold your hand as you go through it and the days and nights afterwards.

manitz Tue 23-Apr-13 11:32:47

hello zen, I had also had a previous termination. It took around 10 hours. I expected 7 and i got upset when it was longer. I would suggest expecting a long time. It was a lot of hanging around so me and dh played games whilst we waited and we chatted, I found it a bonding experience. in the days we waited we watched the wire which was very black ate chocolates and I knitted. Hope that helps. I am so sorry this is happening to you. xx

manitz Tue 23-Apr-13 11:33:25

sorry you knew I had a previous termination. I meant I had a previous c section prior to termination so I couldn't have a full dose.

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