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Rare illness (vernix caseosa peritonitis) after Caesarian section

(9 Posts)
illmum Wed 01-May-13 13:03:13

I had an emergency section with my daughter and 6 days after her birth I became severely unwell I underwent major surgery and ended up in high dependency it revealed I had this rare illness of vernix caseosa peritonitis. I almost died and had other problems along the way. It has now been 9 months since the birth of my wonderful daughter and I am still ill. I have spent 3 months in hospital and am still recovering. I thought having a baby was a new exciting and amazing thing but unfortunately for me that didn't happen. I am now struggling everyday with it physically and mentally.

amazingface Wed 01-May-13 18:12:23

So sorry you've had such a hard time during your daughter's early months. I've never heard of this illness, it sounds terrifying. Are you still receiving treatment?

flowers

illmum Thu 02-May-13 07:13:09

It is so rare there is only 20 recorded cases in the world. But doctors are thinking people are getting it but it is being misdiagnosed. Yes 8 months on and I'm still on long term antibiotics which seems to be shrinking the abcesses and vernix I have in my right side. Everyday is a struggle because you feel different each day but you just have to get on with it when you have a wee one. I love being a mum and couldn't have done this without having my daughter there she gives me reason to get up in the morning but it has been so hard. I wonder how other mums cope with illnesses

magso Thu 02-May-13 09:30:47

I am so sorry that you have been so very ill and are still struggling with this condition. It must be particularly difficult and frustrating being so ill with a new baby, and I can only guess at how you must feel.

I had a fairly rare type of pneumonitis (few years back) that put me in hospital (mostly HDU) for ages (although not as long as you) and eventually returned home barely able to walk and certainly not up to slotting back into my previously active life and caring for my (older but disabled) child. I found it helped when I was told to think in terms of taking 'a couple of years' to recover, and to not try to push myself or my expectations too fast or too high. I was in such a hurry to get well again! I worried for my son (and felt guilty for getting ill), but prioritising his needs over mine harmed us all because I did a lot of backsliding due to overdoing it!!

As for coping -well we adapted a lot of things, like having 2 of many things (one up one down) because the stairs were exhausting, accepting help (like the next door neighbour who asked my son to help him walk his dogs - giving him the chance to run off his energy and me to rest). There may also be official sources of support if you need them, although they are very hard to track down. The hospital you stayed in should have a patient advisory liason service (PALS) who might know where to start - for instance for in home help. Social services usually have a SW specifically to support ill and disabled adults (adult care) which may be worth contacting if aids (such as a perching chair) would make your life easier - they have access to OT support too.

Think in terms of little steps. Do keep posting. There is an adults section over in special needs which may be helpful with the practicalities of caring for a baby with whilst ill. I wish you well.

illmum Thu 02-May-13 09:49:30

Thanks for your reply magso. I'm sorry to here you where so ill too. Are you ok now?
Yes you are right my consultant has already told me it is going to take a really long time to recover and at that I may not fully be back to my old self due to so much scaring inside. I do need to take it little steps at a time I think the better you get each day the harder it gets because your wanting to do more with your wee one.
I feel so so guilty for being ill and missing so much of my daughters life that I will never get back. I do try and not dwell on things because i am blessed to have such a wonderful family and lucky to be alive but it's hard sometimes too when your illness is still there.
I am in contact with my GP and they are sending me for counselling (have you ever spoke to anyone)
The health visitor comes to visit me but has not once mentioned support I do have a wonderful family who help me and offer to take my daughter when my husband is at work to give me a rest but I feel guilty being away from her because I spent so much time away from her when I was in the hospital.
I will get there I know it's just going to take time, that's the frustrating bit.

illmum Thu 02-May-13 09:52:44

I also meant to say I had pneumonia too and my lung collapsed there was talk that they where going to have to remove part of my lung but I think iv luckily avoided that.

magso Thu 02-May-13 10:43:32

You really have been through the mill! Hope your lungs are working well now. It must be very hard having something so poorly understood.

Guilt is almost inate when it comes to children, especially when we cannot do everything we had hoped to do. Yes I did the same wanting to make up for lost time and worried for my son - who had been very dependent on me. DH (who worked away a lot pre illness) had to take on a lot of roles, and change his working patterns for a long time. I remember my frustration well! I keeled over quite frequently at first just trying to be normal again! After ending up on the floor and then needing to be given O2 in the same hospital where I had tried to take my son for his appontment, I have learnt to get another adult to help if needs be!! I have to look after myself to keep my son safe and well. I'm sure you are more sensible.
Unfortunately I now have CFS/PoTS which I probably had had in milder form before the pneumonia- or may have been the cause (along with a stubborn refusal to slow down) - still do not know. The not knowing can be difficult. Now I aim at getting more well - as well as I can. That kind of means prioritising looking after myself and pacing with care! By the way I have had peritonitis (as a child from ruptured appendix - so very different) so have lots of scarring which (for me)affected fertility but not much else.

I had to have minor surgery recently and a friend discovered that a local charity could provide (ie the charity pay) a home help for 6 weeks after post hospital discharge for those most needing it. I wish I had known when I was ill. I noticed a leaflet about it at the hospital recently - locally here it is administered through age UK using their staff (the post hospital service is not age dependent like the usual one). It is hard to find out about help.
I think I have slowly adapted, as have we all.
Good luck with your little steps forward and getting well.

illmum Thu 02-May-13 11:08:35

By god you have been through an awful lot and you seem to be coping amazingly. You sound as if you have a good positive attitude. I am very positive about things but I just get scared I become really ill again. Because this condition is so unknown they cant give me any answers about anything I ask so that gets frustrating.
Yes they did say that I would have fertility problems but I think after this it's safe to say I won't be having any more which is devastating but I'm blessed to have a daughter.
I think the scaring is going to be bad from my side because they couldn't get in to clear it out so they are hoping that antibiotics will shrink it but it will leave scaring.
You are doing so well and continue doing what your doing.
I feel I just need some closure to get on with my life.
We will get there slowly but surely

Cbozec80 Mon 17-Nov-14 22:56:28

I actually can't believe I've found this post illmum. I thought I was alone as a vcp survivor. I too suffered with the condition late 2011, it went undiagnosed for weeks. I too had pneumonia! I had a laparotomy, appendectomy, lavage. I was in intensive care and was nearly no more. I didn't have any abscesses though but recovery took a long time�� I diagnosed myself in hospital by simply googling my symptoms. They eventually listened. I was in hospital for 31 days in Swindon. I was termed a medical mystery. It was horrific. I'm now in the situation three years later And wondering what my insides must be like for I'm not able to conceive. Would be great to have a chat offline to compare experiences if you want? So reassuring to know I'm
Not alone x

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