Yearning to be a mum

[Iona]

 Hello fellow IHD members, I really need your advice and support please...I have recently returned to hemodialysis a few months ago and I'm happy enough BUT I long to be a Mum.  Sadly I had a fair bit of rejection to cope with when I had a  transplant and I couldn't bare the thought of being pregnant when I might have to take some really toxic drugs to fight off further episodes of rejection. I am the wrong side of 40 too. Whilst I had a transplant I saw an obstetrician who suggested surrogacy. (My partner and I had never considered this option but you can surprise yourself when you're in a desperate situation.) We wanted to give this a lot of thought before signing up to anything/ paying large membership fees,etc..but a few months later my kidney started to fail. So, here I am, well and content on hemo with a very loving, kind husband by my side. I am grateful for this but have a deep sadness about being childless. I am a teacher and have several Godchildren but yearn for a child of our own. My wonderful husband has great sadness about being childless but is a very positive soul who thinks we should go for surrogacy, if possible. I've looked into adoption and this is not possible. I am nervous of talking to my consultant about surrogacy and the treatment necessary. Luckily, he is kind and thoughtful but I worry he will sympathise with our situation and that'll be an end to it. I am almost ashamed to discuss surrogacy with him as I think I am being selfish. I feel I am in limbo...life is ok but it is lacking the joy I know children can bring. I would love to hear from anyone, especially those who have been through the same feelings as me. What do all of you think about being a parent on dialysis?

[lainiepop]

Hi Im sorry I can't help directly, but I would definitely talk to your doctors about surrogacy, it's nothing to be ashamed of at all. I don't know how common it is or whether it's an option you would want to consider but I know there is someone on here who had a baby while on dialysis, both she and her little boy are fine, he is 3 now. Maybe send her a personal message if she doesn't see this thread and see what she says about being pregnant and raising a child on dialysis. (She has just received a transplant in the last few weeks so), the link below is a link to her profile where u could send her a private message if you want.

http://ihatedialysis.com/forum/index.php?action=profile;u=51659

Sorry I can't be more help xx

[MooseMom]

Iona, do you feel that a baby would have to be biologically "your own"?  Could you be happy with an egg donor?  If so, then your consultant has no say in the matter, really.

[Iona]

Thanks very much Lainiepop and Moosemom for your replies. I will PM the mum you suggest Lainiepop -thank you.    Your suggestion of using an egg donor Moosemom started an interesting discussion with my husband.. I certainly had not considered this as an option. I think, firstly, I need to find out if I can have ivf whilst on hemodialysis? Any docs out there reading this who can help answer this?

My main concern is, over and above doing everything I can to bring a child into our life, is - is it fair? My life has been wonderful but has been a roller-coaster ride..how do children cope when their Mum/ Dad is in hospital - has it had lasting effects on them? How do they cope with a parent on home hemoD? How do YOU cope?! Any comments/ opinions very welcome..

[Poppylicious]

My main concern is, over and above doing everything I can to bring a child into our life, is - is it fair?

My take on this is that even healthy parents have no guarantee as to what the future will hold (as I'm sure some of the members on here who had children before they knew about their kidney failure can testify to!). Life is full of twists and turns.  Only you can decide how deep your concern runs in this respect and whether you have support systems in place which will give your child/ren the best life possible under the circumstances. 

I can't really answer any of your questions (I'm not a mummy and I'm on this forum because my Blokey has kidney failure), but I hope that you get what you would like, somehow and if it's meant to be be.

[MooseMom]

I don't think you are asking quite the right question.  It's not a matter of whether or not a child will cope (they invariably do), but, rather, it is a matter of whether your husband will cope.

Let's face it.  You have a serious health condition that, while stable right now (and hopefully for a long time), can easily spiral out of control.  If you have a young child, will your husband be able to drop everything at a moment's notice and look after him/her?  This is something your husband will have to think about very carefully.  Will he be able to take care of both you AND a baby/young child/teenager should you stop being "happy enough" on hemo?  He needs to have a VERY big say in this decision.

What if your baby is born with a disability?  Because of my kidney disease, which was diagnosed six months after I had my son, I was told I couldn't have any more children.  OK, fair enough.  But then it turned out that my son is autistic.  While everyone seems to assume that children bring great joy, well, I can tell you that's not always true.  While I love my son more than I love just about anyone on this planet, "joy" has not been an emotion I have felt very often.  "Terror" and "worry" describes my parenting experience far more accurately.  Could your husband cope with a wife on dialysis and a child with a disability, God forbid?  If he thinks he can, then go for it.

Having a parent on dialysis surely has an effect on a child, just as having a parent with cancer or with some other awful chronic disease, but it doesn't mean it is necessarily a negative effect.  Maybe children born to parents in ill health learn to be more caring, more empathetic, more helpful and more independent.  Maybe yours will grow up determined to find a cure for kidney disease or to develop a better way to deliver dialysis.  A parent who is ill can still be loving and capable of instilling good morals in their children.

Please post more about your thoughts on this subject (but only if you want to.  It's a very personal subject, I realize.).  I'm very interested in what your husband has to say, too!  Good luck!

[Iona]

Poppylicious, thanks so much for taking the time to add your thoughts. I'm really grateful.
I am lucky to have a very supportive family who would, no doubt, be there at my side helping out if I was in need. I have a few close friends who I could also rely on but would not like to burden - they all have jobs or families themselves. However, I know that if I had a little one to take care of they would be thrilled for my HB and I, and would certainly offer day to day support, phone calls, babysitting,etc.

Moosemom -you really gave me food for thought and I agree with you entirely..my husband needs to be able to cope. Physically he would be able to drop everything and take care of a child (he's self employed which sort of helps) but I worry how he would cope mentally were anything to happen to me. He is an intelligent, kind and sensible man but who knows how he'd cope with a wee one if I were not on the scene at all. I have asked him how he'd cope but he gets quite ruffled and says 'I'd cope' in a 'Don't-ask-me-anymore-pessimistic-questions' way. But it needs to be discussed and your post (which I read out to him) has helped me to get him to sit down and think about all the possible scenarios. I'll let you know how we're getting on. It's a big subject.
I had considered the question of what if our child has a disability as I have a few years teaching experience with children with autism and other special needs. It has been the most enjoyable, exasperating, rewarding and exhausting teaching experience of my life. I do not know how I would cope with dialysis, all that it brings and a child needing the boundless energy you need for such a child but - you did and you still find energy to generously offer complete strangers your time and good sense!

Your words,''Having a parent on dialysis surely has an effect on a child, just as having a parent with cancer or with some other awful chronic disease, but it doesn't mean it is necessarily a negative effect.  Maybe children born to parents in ill health learn to be more caring, more empathetic, more helpful and more independent.'' Well, that's the dream ...I think there's a way to go before I am convinced it's the way forward.

[MooseMom]

Iona, you and your husband sound like thoughtful people, and I am sure you will make the right decision for yourselves.  As Poppy said, there are no guarantees in life, but that doesn't mean that you must not dare to follow your dreams.  Wanting and striving to have a child is not selfish; it is a primal instinct that is there for a reason.

Which modality of dialysis are you on?  Whichever it is, it takes time, and it will most certainly be that time when your baby needs changing or feeding or has a fever or needs to go to the doctor or who has just vomited all over the carpet or who is wailing for no discernible reason.  Will your husband be able to cope with all of that while you are having a treatment?  And when I say "cope", I mean will he have the time and energy after/during his work?  You could be perfectly fine physically but still be unable to deal with babymess and/or childchaos because you are stuck having a treatment.  Children need tending to at the MOST inconvenient times.

Just to be clear, I was not on dialysis when my son was young.  I personally don't believe that having a child with autism is "enjoyable" or "rewarding", rather, it is fraught with great worry and sadness.  While I have the greatest respect for special needs teachers (my son's were the best!), they get to hand those children over to mum at the end of the day, and those teachers are not the ones who have to worry what will happen to their autistic child when mum and dad die.  I love my son to pieces, but it has hardly been an enjoyable or rewarding experience.  It's humbling.

Yours is a situation that could turn you into a pretzel if you let it.  I am not you, but if I were, I'd be thinking about two things.  One, how would my husband and I handle it all logistically, keeping in mind that there would be certain hours out of certain days when I'd be out of commission while dialyzing.

The second thing I'd be thinking about would be the biology of the baby.  Would I want the baby to be from my own egg?  If that is important to me, I'd consult various doctors to find out if the drugs I'd taken during transplant could have affected my eggs, possibly resulting in deformity.  Would we use hubby's sperm?  How would I feel if my eggs were not viable?  Would we consider using a donated egg?  If so, how would I feel if the baby was biologically his but not mine?  Would that in any way mean that I might feel that the baby was more his than mine?  Would HE maybe feel that way?  Maybe this particular issue is of no importance to either of you!  But it is worth thinking about.

You're right; this is a huge thing.  But as you explore your options and do more research, the answers may become clearer to you. I have every confidence that you will ultimately make the right decision for yourselves.   

[Iona]

 It's amazing to get a reply like that . Thank you
Thanks for all your thoughts-you have really given me something to think about.
Will update this in the future and let you know what happens xx

[Wildrose]

Iona, I completely understand your desire to be a mom and my heart aches for you. I am so blessed to be a mother and I could never tell you or anyone else to ignore your hearts desire. However I can't tell you that its a good idea either. However, I can tell you something based on my own situation.... if I was not a mom, I would not still be doing dialysis, I would give up and let 'nature take its course'. So for me, being a mother gives me a reason to keep going because I have my kids to take care of and I can't be selfish. Now, this is obviously not a reason for someone to have kids in the first place..... but I do think that if you have a proper support network and as Moosemom pointed out, if your husband could handle all the possible outcomes of your having a child together, then perhaps it would be fine. For me, I know for a fact if I had another baby and I happened to pass away, or the baby had severe disabilities, we could not handle it. My husband could not handle it.

I know this doesn't stop the yearning of wanting your own children, but have you tried getting involved in something that will surround you with kids? Perhaps volunteering in a nursery, or at a childrens hospital, etc. I wish you the best and hope that the right answer for you and your situation, makes itself clear (if only life worked that way).

[cariad]

Hugs to you, Iona. For what it's worth I would urge you to go forward with surrogacy if you feel your life would be incomplete without a child. All children have pain and struggles, all of them. I have 2 kids and we have survived some dramatic moments, and so shall you if you choose to take that path.

Worry doesn’t change what will happen one drop (says the chronic worrier - but I challenge myself as much as possible to stop making myself miserable that way). I would recommend that anyone who becomes a parent has the confidence to say that they can handle whatever comes. Because let me tell you, you will *not* see most of it coming. Parenting is nothing if not entirely unpredictable. I still cannot believe these two boys are related to me.

I asked my kids if they remember anything about me being really sick, and they both said they remembered being scared. One of them said that it was positive in the end because “we got through it, and maybe we could help other people”. They felt a sense of accomplishment over it, although one of them did tear up a bit and said he really didn’t like to talk about it (not the one I would have expected to, which goes to my point about the unpredictability factor!)

My kids do bring me joy, every day. The one that has a tougher time with life, when something goes right for him or he suddenly shows emotional insight that I never thought he had, it makes it that much sweeter. It was a long battle to get where we are today, and I fear the teenage years, but I try to only look at today. My archetypical Jewish grandmother loved this little joke:
First Couple: We don’t have children
Second Couple: Oh? What do you do for aggravation? 

My husband didn’t want to talk about the worst-case scenarios either. Now that I’m over my kidney troubles I can see why that was so frustrating for him. Really, the answer is always going to be that you’ll find a way to cope because you have to. It sounds to me like he wants this so much that he really doesn't want to hear anymore reasons not to go through with this. I have to think that he is well aware of the potential heartbreak in all of this, but how is it less painful to not even try and live with the regret? What did you do if something went wrong – suddenly and catastrophically – when you were teaching kids with autism? Obviously you must have a load of resourcefulness and ingenuity at your disposal if you were in that line of work.

If you do have a child, when things go sideways (not if, when, because it’s a guarantee for almost all of us) you might take options that you really don’t want to use, imposing on friends and relatives, and you might be overwhelmed, as we were, with gratitude at the sheer number of people who stepped up to help. People will let you down, and others will come out of nowhere to save the day. I am convinced that the world runs on this rule alone.

Yes, there are so many things that *could* go wrong. Every day we all face this reality in every aspect of our lives. When the phone rings it could be a teacher telling me that there’s been a horrible accident, or a collection agency demanding money that I didn’t even know we owed, but it’s usually just my husband asking me how my day is going, and every once in a while he’ll have time to meet for lunch.
 
Good luck with your decision.

[Iona]

Thanks Wildrose for your response. I hope others in a similar situation to me find all the posts from you kind folk as useful as I have. All opinions have been really thought provoking. I am immersed in the lives of children but even though I have spent over 15 years teaching little people I have not lost the yearning to be a mother. I have tried working with the most challenging children behaviourally and in contrast, a class of 25 reception children (whilst I was on dialysis) but it hasn't dented my enthusiasm or prevented the deep longing to have a child of my own and to become a family. It hasn't fulfilled me in that sense, though it is the best and most joyful career for me.
It's a shame the situation where an older child can choose to be a part of our family (having been educated about what the future could hold for us) does not exist. With restrictions to adoption in the UK being what they are I suspect this is completely out of the question.

Being married, my husband is a huge consideration and I have spent many nights (before I discovered IHD) trying to hide streaming tears from him as I think about how I have spoilt his chances of becoming a father - once or twice I have caught his eyes welling up when he is watching something on TV about families/ children - it is very painful.

Cariad, you made my heart soar! I am so glad life with children is a positive experience for you. It was great to hear this ('though I have no idea what your background is but assume you have had a transplant? Congratulations by the way.)You and your husband must have coped well with those 'sideways' moments when medical issues have interrupted normal life and your boys sound like real treasures - what a sweet thing to say, "..we got through it, and maybe we could help other people”. You must be so proud of them.
(Thankfully, in teaching, supply teachers are at hand for those moments when I have needed to nip into hospital for a period and the children have always appeared to adjust well when a new face has had to take over on those rare occasions).
You also made me laugh Cariad (and if I admit it, well up too) and I listened to your good sense. Your thoughts have been added to the discussions I am having with my husband.  I don't know what the future will bring but I no longer feel so isolated and this has made me much more peaceful about it all. I don't feel ashamed about my wishes now either so I have finally written to my consultant requesting the opportunity to discuss surrogacy with him, my husband and I. I don't know that we could live with the regret of not having gone through this process of looking into surrogacy.

Thank heavens for IHD, it's a rare thing to find so many thoughtful people who are experiencing, or have experienced, similar difficulties and are prepared to give the time and care it takes to answer some tricky questions honestly. A million thanks.