A very difficult decision (children)

Hi again

I have thought a lot about whether I should publish this as I am sure it is very controversial but I think it is an important view. So I caveat it with an apology. I do not wish to offend or cast aspersions at the decisions of others – this is a very difficult and personal decision and others will feel differently. I am truly sorry if this view upsets you however, this is the right decision for me.

I have written on here about my life story and, as with everyone, it is a much-abridged version. When I was just 20 I was told that I couldn’t have children, its was a massive blow – I haven’t always wanted kids, but I have always assumed that one day I would know that now was the time. And at that age I was angry that life is the only reason we’re put on this planet and if I can’t do my bit then what’s the point in being here (I did not feel suicidal btw but I struggled with the ideals of life a bit). Imagine being so young and having to explain to potential, or new partners that you cannot have children because if that is the most important thing to them (and it is for many people) then they deserve the chance to walk away early. Essentially, tell people everything and then if they stick around that’s brilliant and if not, then it wouldn’t have been worth trying.

When I had my transplant (over four years later), I was told that now I had a fully functioning kidney I could sustain a pregnancy. This wasn’t the answer to a question I had asked, a doctor who ran the fertility and transplant clinics freely offered this information; I reacted angrily. I was cross that, in the first place someone could tell me something so important without telling me that it was dependent on kidneys and not all the other illnesses, and now I was angry that after getting my life back someone was telling me that I ought to have kids now. Looking back, I understand that they were just letting me know my options but this is such a huge area of life that I think a little more time with me wouldn’t have gone amiss. I was 24 then.

I recently turned 30 (a huge shock to the system) and around that time I thought I had better explore my options – I have not had a straight forward time in recent years so the more you know the better in my opinion.

I spoke to many professionals about sustaining a pregnancy with an elevated creatinine level from a transplant, APS and Lupus… The risks were very real. I was told that the baby was unlikely to make full term and that if I made it past 28 weeks we started to get out of trouble, the further I managed to sustain the pregnancy the less chance of serious problems like serious disability, deafness, blindness down to learning difficulties and adhd. All these risks were small (up to 25%) but real and the chance depended on the reliability of my body. So these were the risks to the baby. The risks for me were both tiny and huge. The impact on my transplant could be significant, it could mean a reduced life for Kevin (my transplanted kidney) or it could even force end stage renal failure (again). That would leave me with a baby while on dialysis. We also discussed the potential change in hormones and stress and whether that would bring the APS and/or lupus out of remission either. Again, I stress these risks were all small but the impact if they occurred was huge and has to be considered very carefully. After all I could come out of the whole thing unscathed with a healthy baby – but based on my body’s previous performance…

We spoke at length about my medication; what would have to change and what could remain the same. Having tried many different pills and solutions I am reluctant to change again in case something goes wrong… last time my medication wasn’t quite right I got german measles and viral meningitis at the same time! But changing medication can be monitored and it was the least of my troubles…

And then we discussed the show-stopper for me... the risk of passing it all on – how could I live with myself if I knew that I had a choice and I got it wrong – I gambled with someone else’s life? I have a puppy who is very sick with kidney failure (what are the chances!?!?!) and I feel terrible looking at him and knowing how helpless I am, I would do anything to help the little guy but all I can do is love and care for him. Now how would I feel if that was my child and I know that I had a choice? I know that my mother blames herself as the illness came through her side of the family (I have never thought there is any blame, and certainly not in her direction) – it wasn’t even her who had it. I think that purely for that selfish reason, I could not do it.

When I spoke to the medical professionals about the risk of passing it on, I was told that there is no hereditary link, but it does seem to show up in some families!? I am sure that one day this will be better understood but why it has cropped up in three different generations of my family seems more that a coincidence to me. I suspect that as a relatively new illness that the history does not go back far enough to really see genetic links (this is pure speculation btw)

So it is with great sadness that I have had to come to the conclusion that having children naturally is not for me. I will have to go down the route of adoption, fostering or buying them from the internet like Angelina Jolie and Madonna!!

Thanks for reading


5 Replies

  • A very heartfelt post. All three of my diseases, two came out after my last child was born, 12 years ago, and the third, which I now know is Hughes, seronegative etc, found by myself, around two years ago, I remember so carefully asking if there was any family connection with our diseases and the answer no. There was never a name given to any three things until my mid thirties and my family complete...

  • Sorry you have had such a awful time. I just wanted to tell you about the fostering and adoption bit.

    I have Hughes syndrome and had a little boy who is now thirty he was only 1lb 14oz. I was then sterilised at 24 as i was gravely ill on my last pregnancy.

    We despirately wanted a baby a brother or sister for Chris anyway we applied at several agencies but were told that we couldn't have a baby as we already had a child. We decided to foster after a lot of interviews courses investigations/ police checks etc.

    We have fostered several children mainly babies it is very painful when they have to leave either to go back to their parents or to be adopted by some one else. But having fostered the Social services realised we would be good parents.

    We asked if we could foster with a view to adopt. I would recomend this. But if you can adopt from the start would be easier and less stressful

    Our daughter who we collected from her foster parent was just over 2ys we managed to adopt her after a lot of stress when she was 3yrs old, but it was well worth it and we love her to bits.

    Hope things get better for you

    Karen xx

  • Karen

    Thank you so much for your reply. I need to start looking into these things. is there an agency that you would recommend or dos it depend on the area you live in?


  • Yes it did definitly depending where you live,but it may have changed as that was over 20yrs ago

    Good Luck


  • You are an incredibly brave and honourable person. I know, from my own experience, that is not a light decision to take. My heart aches for you and is full of admiration for you too. With my love Sharon x

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