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My DD's health issues have left me feeling so down.(13 Posts)
My beautiful DD is going to be one soon. She was born with an imperforate anus, which has meant that in her small life, she has undergone three rounds of major surgery, including a colostomy for four months. In amongst the surgery she has had a colostomy prolapse, a suspected wound infection, and now has continued constipation. We have to pin her down and dialte her bottom twice a day. We were told after stoma reversal that we wouldn't have to do that any more. But a month on, I became concerned that her new bottom didn't look right and managed to get hold of her surgeon, who the next day confirmed that my suspicions were correct and it had healed almost closed and so we have had to start right from the beginning. She also has to take laxitives and suppositories, both of which I am highly concerned about their long term use and neither of which seem to work.
She has suffered so many painful and invasive procedures that she crys the moment she see's her paediatrician. I have seen her in pain so many times it breaks my heart to think about it. I have had to starve her for days after two operations. I detest having to do these dialations on her and I am worried about what all this must have done to her.
I have been to our local hospital so many times over the last 7 months I couldn't possibly count. Thankfully, her surgery went well, but my confidence in the system has been shaken because my daughter's newly formed bottom healed almost closed and may well gone completely if I hadn't noticed. I kept ringing up for appointments and never got one. I feel my daughter is paying the price for that mistake now.I have been given very little information and what I am told often conflicts with other things I have read. Even tonight I have discovered that the suppositories I have been sent home with to use whenever, shouldn't be used long term.
I just feel so full of pain for what she has been through and I am so scared about her future, the weight of responsability to fix her constipation so she has the best chance of continence. I feel like I constantly have to check what I am told now, which is so stressful. It's all just eating away at me. Why did this have to happen to her? I just feel so broken I don't know what to do.
oh my goodness
I don't know what to say...
I feel so bad for her and for the weight on your shoulders.
Do you have any support in RL? Are there any national groups for children with similar problems that you could call? Does the hospital have a specialist nurse who deals with this type of problem? Family counselling services?
I am so sorry.
Oh poor you / dd. I have no uselful advice but wanted to give you ((((())))) as you must have had such a time of it. Hopefully someone can give you some meaninggful support / advice....
I'm so sorry you and your little girl have had such a difficult first year together
My DD2 has special needs and health problems, and we see a gazillion people (it feels like!) so I can understand some of your fears and frustration. I have no magic answers I'm afraid, but I just wanted to share your pain.
(Have you any support from a partner or family?)
It's sad to hear you're so upset. What if you looked at it like this... Medicine is an inexact science (at best). If your DD had been born 150 years ago with her problems, would she have died, or suffered much more? At least she is born now when she can get some treatment, however imperfect.
The real unfairness, seems to me, is that she was born with this problem at all when so many babies are born perfectly healthy. I think I'd be fairly pissed off (+ sad, scared, etc.) about that in and of itself.
I hope the worst of it is behind you, now.
oh im so sorry to hear this, you sound like your doing a great job looking out for her, i hope a dr or someone sees this thread.
try to not feel bad putting her through all this treatment. you hve NO choice.
good luck, my sweetheart.
It's one in every 5000
My friends and family have been great and we do have a specialist nurse who's been a gem. But, nothing they say changes the situation and makes me feel any better. It's the first thing I think about when I wake up in the morning and the last thing I thik about when I go to sleep. I think before I was just focused on getting her through the ops, but now I'm realising that this is never going to go away and I am going to have to fight so hard to give her a good chance and it's always going to be there.
alardi - I always thought it was wrog to feel pissed off, especially when my daughter is such an amazing little girl. She is so bright & beautiful & calm. I have seen her be so brave and she always calms down so quickly when anything nasty happens to her. I've seen much poorlier children and I should be more grateful, but.....
shes very lucky to have you, you know.
you have more strength than you know, you are a mum and we have superpowers.
maybe the problem will, always be there, you just have to try try try everything to see if anything can help, might not cure but might help.
mrshippy - I'm sorry things are so tough for you at the moment. Believe me I do know how you feel. Sometimes, especially early on the weight of responsibility and the worry about the future can be overwhelming.
You are probably suffering from a degree of stress/depression and post traumatic stress on top of it all. The first thing in the morning and last thing at night thoughts are very familiar, you can only operate on autopilot for so long. It will get better I promise but I know that you probably can't see that right now.
She won't remember anything about this first year, you have only done what you had to do but it's horrible when you have to put your child through painful and uncomfortable procedures. Much sympathy.
I'm so sorry you and your daughter have had such a rough time of things. I have some experience of these matters on a personal level, and i've found the following forum a great source of support. www.incontact.org.
There are many people on there dealing with stomas and continence issues and they are probably the best people to ask about the practical side of things as they have personal experience of what works. I've asked questions on there many times (i have a suprapubic catheter myself) and got loads of practical and emotional support.
Thanks- bluegreysky, that's really kind of you to say.
Saggarmakersbottomknocker - That is exactly how I feel. I hope it will get better. DO you have any coping tips?
black31cat - Will check out that website.
Have just emailed out specialist nurse. She's helped with DD's stoma care, but still does hand-holding at appointments.
I think sometimes I just need to get it off my chest and have a good cry.
Mmm - I'm not sure I coped really - more muddled through, and still am to some extent although it's not the 'in your face, everyday' feelings that you have at the moment. It is OK to feel pissed off - don't bottle it up, rant when you need to. I did end up at the doctors with anxiety but he was a waste of space really - sent me off with sleeping tablets which are no good when you have 3 under 5's one who needs night-time attention and a dh working nights
It is especially difficult when you lose trust in your doctors. I had problems with my local hospital and my (now ex) GP, both let dd down badly. I hope the nurse can offer you some support - you shouldn't have to be second guessing all the time.
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