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It's getting harder, the closer I get (long)

(15 Posts)
KarenHL Sun 14-Nov-10 21:42:33

We were told at the wk20 scan there was a problem with baby.

Fast-fwd 13 wks, problems have been confirmed. Both kidneys huge (polycystic kidney disease) and appear to have no function. This means no AF and as such, baby is expected to die v.soon after birth as he will not have enough lung function.

Felt better able to cope a few weeks ago than I do now (33wks). Hospital we were referred onto initially were considering 'pinging' us back to the previous (which we didn't want, as if baby is better than expected, previous hospital don't have facilities). That was rather scary, not knowing what to expect and knowing that the consultants might not want us there if we did turn up.
Hospital not happy with us having an elective (they want natural, even though baby is breech and we are told labour will probably kill him as he'll get so squished without the AF). I want to be able to say goodbye and have the option of family saying goodbye.

At 33wks I now have PGP which means I can't walk much, feel exhausted all the time, dream about going into labour, disturbed sleep, and generally feel like crap. So many aches and pains, I'm (almost) constantly convinced labour is imminent.

Not only that, bump is now v.obvious and I'm too gutless to tell strangers who coo "oo, when's the happy event then?" the truth. I just smile, tell them the due date and pretty much run.

Most babies with DS' problems die. However, I do know two people who were told the same thing about their babies (10yrs ago, mind) and they are now 11 & 9 respectively. I am hoping DS will be one of these exceptions (and yes, I am a realist and know that is unlikely). So why, as I get closer to the birth am I finding it harder to cling onto any shred of hope and getting more scared?

ClaireDeLoon Sun 14-Nov-10 21:47:58

I'm very sorry for what you are going through Karen. You have my most heartfelt sympathy.

I'm not sure what all your terms like AF etc mean but I would insist on being treated and giving birth in the hospital that can give yoru DS the best possible chance and giving birth in the way that does the same.

I don't know what else to say except that I hope your DS is an exception.

iloveblue Sun 14-Nov-10 21:49:34

I'm so sorry you are going through this.
No advice sorry - I just didnt want to read and run.
Am thinking of you x

KarenHL Sun 14-Nov-10 21:54:48

AF is amniotic fluid.
PGP is the horrible hip/back/pelvic pain that lots of people seem to get when pg.

ClaireDeLoon Sun 14-Nov-10 22:05:23

Oh love. Seems very very unfair to be suffering so. I wish I knew what to say or could offer you proper support.

How do things stand now, what have you agreed with hospital or is it still undecided?

KarenHL Sun 14-Nov-10 22:15:13

Hospital have agreed we can go there. Paeds say minimal treatment only, probably palliative. It took 8wks for the hosp' to accept we didn't want a termination.

They insist natural labour is better for future births. Really don't know whether we can face another birth - DH really suffering over this, as am I. Previous birth was a horrendous experience that ended with an emergency CS (which was the calmest, most okay bit of the process) - that was why it took me nearly 5yrs to agree to try for another, I just couldn't face going through it again. Back then I had the most awful time in hospital. They also don't want to monitor baby constantly as they think it'll make us panic with the heartrate going up and down so much. Seriously don't think I can handle going into labour knowing that DS is alive and then possibly having him die before delivery. Doesn't seem to matter how many times I try to explain this.

fudgecat Mon 15-Nov-10 08:42:11

Hi Karen

I read your post and felt that I had to reply, I don’t post much on here now but your story is so similar to what happened to me. At my 20 week scan we were told that out baby had IUGR and that the outlook was bleak as the baby was already 3 weeks behind on size. They wanted to rule out a possible chromosomal problem so I had the amnio they recommended, this caused my waters to go at 21 weeks. We were offered a termination but I said no as I wanted to give my baby every chance. I was in and out of hospital for the rest of the pregnancy but my baby was just too small to make it. He was stillborn at 34+3 just over 8 weeks ago. This is the hardest thing I have ever been through. The only advice I can offer you is to not give up hope, there is always a chance that your baby may be the one that can beat the odds. Please feel free to PM me if you want to chat or have any questions.

spilttheteaagain Mon 15-Nov-10 20:01:05

Karen I am so sorry you are going through this horrendous experience and I so hope your little boy is the exception to the norm. Best wishes x

ThatllDoPig Mon 15-Nov-10 20:07:55

Poor you, what a truly horrible thing to go through. Difficult to find the words that could possibly help. Thinking of you though, and fudgecat So sad for you both and your babies.

KarenHL Thu 02-Dec-10 21:50:36

Saw the cons yesterday. Not good - baby's kidneys now so huge they are fused together. Plus his tummy now measures 42cm (at 35wks) and is only going to get bigger.

Although baby is also breech and I have PGP, Hospital insist I not have an ELCS. Bad enough that I am told my baby is going to die during or within minutes of birth, now I have to go through the labour from hell as well.

Am bloody terrified (took me four years to get over DD's birth).

YuleBeLucky Thu 02-Dec-10 21:54:47

Karen, I am sorry to hear this. It sounds absolutely horrendous. Why are the hospital so adamant you cannot have an ELCS? It seems so cruel to force you to labour when you feel so strongly that you do not want to have to go through it.

I cannot imagine what you are going through, but want to send my love and very best wishes to you and your baby x

sotough Thu 02-Dec-10 22:12:53

i am so sorry, this sounds utterly horrendous. i cannot see why you can't have an elective CS - it seems utterly inhumane to force you through a 'natural' childbirth that will bring you such terrible distress. i am sure you don't feel nearly strong enough for 'fighting' but is there someone who can take up this battle for you - your GP even? your mental health is at risk, never mind anything else. can you demand a second opinion from a different consultant, specifically about whether you have a case for a c-section? sending you the most heartfelt sympathy - i simply can't imagine how you must be feeling

Brokenbits Thu 02-Dec-10 22:27:47

Karen I am so deeply sorry to read your story. Like the other ladies I am at a total loss as to why they cannot agree to an ELCS. Is it to do with your own health? I can't understand how a CS could be so detrimental to future births and I agree that, right now, your mental wellbeing is far more important.

If the prognosis for your baby is not good, it seems positively barbaric for all of you to put you through even more suffering. I am so very, very sorry. Nobody should have to endure this. Lots of love and supportive vibes to you and your family. x

KarenHL Thu 09-Dec-10 21:03:54

Saw another cons for a second opinion today. She's agreed to an ELCS, provided there is a SCBU bed available in case DS is better than expected (hugely unlikely from what we are told tho' - expected to stop breathing just before/after delivery).

RudolfThePinkNosedReindeer Fri 17-Dec-10 20:22:11

Karen I am so sorry to hear your story - I didn't want to read and not post. I don't have any advice for you but my thoughts are with you, you sound like an incredibly strong lady xx

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