Coping with not having children

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

Coping with not having children

Postby midgetem » Tue Mar 10, 2015 12:57 pm

Hi all

I was diagnosed with CKD 11 years ago ( I had accelerated hypertension but no real cause was found)

since then I have just gone for annual visits to the consultant as blood pressure is well controlled with meds and creatinine although not great is stable at 190.

Having recently got married I booked to see my consultant to discuss wanting to start a family. Previously my consultant always told me to see him when I wanted to start a family as my meds would need to be changed and a few months on the new meds to check I'm stable.

anyway roll onto yesterday when the consultant told me that due to the level of my creatine level he would not support me in getting pregnant and I had to accept I wouldn't have children. I know there are high risks involved with pregnancy but I guess i had always hoped that what I had been told in the past this would be possible with careful monitoring.

I guess what I'm asking is have any of you been told not to try for children and how did you cope with that?

I just feel so down about it and I feel like I have let my partner down as well.

Thanks
midgetem
 
Posts: 10
Joined: Tue Mar 10, 2015 12:42 pm

Re: Coping with not having children

Postby rheaybou » Tue Mar 10, 2015 1:23 pm

First of all this must be a tricky situation for you to go through, but don't feel like you have let your partner down. Would it be possible for you to get refered to a consultant who has more experience in pregancy in women with reduced kidney function?

On the flip side I was against having a family due to my genetic condition being passed down...but my consultant helped me explore genetic testing and advice / guidance from people and medical staff with more experience in the matter. Dont give up on this.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
rheaybou
 
Posts: 1370
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Coping with not having children

Postby AmandaClare » Tue Mar 10, 2015 2:51 pm

I know 190 is much higher than the level they like to see. On the other hand it does sound like your kidney is pretty darn stable.

I can only echo Richard - keep asking and researching. Then even if you come to the same conclusion you are more likely to be able to accept it. If you can see an obstetrician who specialises in renal patients that might be useful. In the end it's your decision - doctors can advise and tell you the risks but it's you who has to decide.

Good luck.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
AmandaClare
 
Posts: 657
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Coping with not having children

Postby midgetem » Tue Mar 10, 2015 6:15 pm

Thanks for the replies.

My consultant said he would send research through to me.

will ask to speak to someone who has experience in pregnancy to help.

really don't want to have to give up on my dream.
midgetem
 
Posts: 10
Joined: Tue Mar 10, 2015 12:42 pm

Re: Coping with not having children

Postby fionadee » Tue Mar 10, 2015 9:22 pm

I really feel for you. I had a child 2 years ago why by GFR was 75. 3 months after he was born my GFR dropped to 35 and never improved. I have now been told not to have a 2nd child (GFR currently 35 and creatinine 159). They are concerned that I will loose more kidney function and have kidney failure once the baby is born. My hear is breaking. I never ever ever thought I would have an only child and my heart breaks every time I look at him and think of him growing up without a sibling. I have seen a 2nd consultant since who has said it is ultimately my decision but there is a risk of kidney failure. We have been over and over it in our head and at some points are thinking lets just do it and see what happens then at other times thinking how will I cope with a toddler and new born baby with kidney failure and why would I run the risk of not being able to look after my babies. We are now exploring surrogacy to see if it is something we could afford to do.

I know that overwhelming feeling of wanting to become a mother - it took my 4 years to have my son. It is a decision only you can make and the drs can only advise you on the risks. Get as much info as you can and decide with your husband if you feel it is a risk you are willing to take.

As a side note I have been seeing a councellor arranged through my GP and she has helped me immensely. After my news I started going through a process of grief and speaking to someone who helped me realise that and how to deal with it helped me a lot.

xxxx
fionadee
 
Posts: 4
Joined: Fri Feb 20, 2015 9:02 pm

Re: Coping with not having children

Postby cathys8 » Wed Mar 11, 2015 8:54 pm

Hi midgetem,
I had a baby three years ago. At the time I got pregnant my creatinine was 220. I had discussed getting pregnant with my neph beforehand and he warned me that there may be complications and that my kidneys might fail. He was very supportive and encouraging though. I was heavily monitored during the pregnancy and everything went great until about week 31 when my creatinine started to creep up. I ended up getting pre-eclampsia and had the baby by c-section at week 36. The baby weighed 5lb 6oz, he spent 2 weeks in special care as his lungs hadn't fully developed. He is absolutely perfect now :D
The day after delivery my gfr fell to 5 per cent. It slowly recovered though over the next few weeks and settled at about 12per cent I think. A year later I went on dialysis and 6 months after that I had my transplant, in Mar 2014.

It was a tough couple of years but both myself and my son are doing great now. I have absolutely no regrets.
The way I look at it is that my kidneys were going to fail at some stage anyway. Having a baby just accelerated the inevitable and it is a life changing thing to be a mammy. Well worth it, I would do it again no hesitation.

Best of luck whatever you decide.feel free to pm me if you want to know more
Cathy
X
40 yr old with Alports syndrome
CAPD since Sept 13
Nov 2012 - listed for transplant
27 Mar 2014 - I got the call!!
cathys8
 
Posts: 75
Joined: Fri May 18, 2012 9:15 am

Re: Coping with not having children

Postby midgetem » Thu Mar 12, 2015 2:32 pm

Thank you all for the replies and the stories. It is good to hear other people experiences.

fionadee I am sorry to hear of the position you are in. I never thought about counselling but that could be an option to help me come to terms with everything. I'm still seeing a counsellor following my brother death so maybe they can help suggest someone.

Cathy I guess that is mine and my husbands biggest worry. If my kidney get worse which they could well do how would we cope with a young child and me not being well.

However it's good to hear that they could care for you and help you going forward with the transplant.

I would love a childl think I'm more of the lets go for it and see what happens and we will deal with things when they arise but my husband is more practical and thinks through what would we do if the worst happens or what would we do if we lost the child could I cope etc. The consultant warned me that apparently babies very rarely survive due to being bought early.

You have all given me food for thought thank you
midgetem
 
Posts: 10
Joined: Tue Mar 10, 2015 12:42 pm

Re: Coping with not having children

Postby hotashel » Thu Mar 12, 2015 8:11 pm

midgetem wrote:Thank you all for the replies and the stories. It is good to hear other people experiences.

fionadee I am sorry to hear of the position you are in. I never thought about counselling but that could be an option to help me come to terms with everything. I'm still seeing a counsellor following my brother death so maybe they can help suggest someone.

Cathy I guess that is mine and my husbands biggest worry. If my kidney get worse which they could well do how would we cope with a young child and me not being well.

However it's good to hear that they could care for you and help you going forward with the transplant.

I would love a childl think I'm more of the lets go for it and see what happens and we will deal with things when they arise but my husband is more practical and thinks through what would we do if the worst happens or what would we do if we lost the child could I cope etc. The consultant warned me that apparently babies very rarely survive due to being bought early.

You have all given me food for thought thank you


Hi,

I have CKD stage 5 and both my babies were premmies one was 5lb 8 and the other 4lb 10, neither were in special care and you wouldn't even know. When I had the first one they kept an eye on me but everything was fine until 36 weeks when she stopped growing so I was induced. They told me to ask them before I had a second one as there may be complications, but i didn't ask them and again I was watched and again he stopped growing at 36 weeks and again I was induced and he was fine. It was after about 18 months before my kidney function started to drop. My kidneys were going to fail anyway and that was always going to be the outcome so if I had listened I would have had no kids and kidney failure but I didn't listen and now I have two kids and kidney failure the way I see it, it was win win. Would I do anything differently - no I am glad I have them because they are something to focus on they need me and they are my best friends, I would have the most crap day ever and I just see there little faces and they make me smile, even when they are being pests.
You only have one life and can't live by what if's, what if you get ran over if you go outside, you wouldn't go out. no one can tell you what to do but I wouldn't change my like kidney failure and all. xx
hotashel
 

Re: Coping with not having children

Postby amanda21 » Thu Mar 12, 2015 10:55 pm

Had first child with starting creatinine of 148.. Delivered at 35 weeks due to suspected preeclampsia and massively high proteinuria. Very healthy boy.. Got pregnant again with creatinine at 164 ish.. Gave birth at 37 weeksto healthy boy. Day of delivery creatinine went to 220 but went back to around 160 and now runs 165-175 generally.. Echo sentiments above. Pregnancy was a worrying time but I wouldn't change it. Have two lovely boys so definitely worth the risk and slight decline In function. Was under fetal medicine team at Hammersmith which has combined renal and obstetric medical clinic.... Amazing care,, would have junior doctors from all around the world sitting in on appointments to see how they managed a high risk pregnancy.. Boys now 3 and 5. Good luck. I'd say go for it but get under a good team.
amanda21
 
Posts: 18
Joined: Thu Jun 10, 2010 1:47 pm

Re: Coping with not having children

Postby Cath » Sat Mar 14, 2015 6:38 am

Hi

I was in the same position as you 12 years ago. I really wanted children and always assumed I would have them. I knew I had kidney failure from the age of 22 but at that point I had around 45% function. However by the time I explored having children, my function had dropped. I had an added complication that it turned out I had fertility problems as well so I would have needed help to get pregnant. I was basically told that they would not help me get pregnant due to the high risks to me as well as to the baby. It was a pretty stark message. I was devastated at the time. i spent a long time getting upset whenever anyone else got pregnant and I won't lie, it was hard.

However, I know it sounds lame but time has helped me. I have other children in my life that I've concentrated on. And when I went on dialysis, I was grateful that I only had myself to worry about. That doesn't mean that I don't still think about it, but it is something I have learned to deal with. I just thought it might help you to know there are other people in your situation if it isn't something that ends up happening for you.

Take care

Cath
Cath
 
Posts: 119
Joined: Sun Oct 31, 2004 2:29 pm
Location: Bristol

Re: Coping with not having children

Postby lainiepop » Sat Mar 14, 2015 5:21 pm

Hi Midgetem. I am sorry to hear what your consultant told you, as mine have always been the opposite, completely supportive. I have had kidney disease all my life, I am now 32 with a 7 and a half yr old boy and and almost 4 yr old daughter. If it is something you really want i would seek a second opinion, or perhaps asked to talk it over with an obstetrician first, i think we did that, or the 2nd time i definitely did.

My Creatinine when I got pregnant with my son was stable at around 170 I was 25 and took 6 mths to conceive. One of the risks with kidney patients is slow growth Prem birth and pre eclampsia risk. So I has frequent scans at 12, 20, 24, 28, 32 and 34 weeks to check growth plus very frequent blood tests to monitor creatinine. You are referred to an obstetrician who deals with high risk pregnancies. My Kidney specialist advised to deliver by c section a month early but as creatinine was around 190 obstetrician decided to leave it. Baby stopped growing that last month I pointed out this was main sign of pre eclampsia they put it down to me being tiny. Anyway creatinine then rocketed I ended up having him at 39 weeks naturally in 3 hours. He weighed 5lbs12 and my creatinine was 240 on delivery day and I developed post part um pre eclampsia. Anyway creatinine scrambled out to 190 to 210 odd after.

My daughter took 16mths to conceive and creatinine was 230 when I found out I was pregnant. This was a shock as while we were trying it had been very stable, and docs were supportive of another pregancy. This time i Was told by the obstetrician i might need dialysis to sustain the pregnancy and baby would be really early. Anyway this time things were more stable creatinine was 260 when I had her 5 weeks early by c section she only weighed 3lbs12 but was v healthy came home after only one week in hospital. My gfr was around 17 when I had her dropped to 10 a month after, had tx 8mths after that. My dad donated to me and i didn't need dialysis at all.

Both my children are healthy and bright and I don't regret it for a second. I asked for an honest opinion and was told before embarking on it that kidney would prob last another 5 yrs (of course they can never say really when but obviously it's not a question of 'if' it fails but 'when'!!) While having my daughter probably moved it along a year or 2, i don't regret the decision, because my dad was able to donate. His age meant in a few more years he might not have been able to so for us it worked out for the better in a way!

So I had my transplant just before my daughter turned 1 and my son started school, which was prefect timing. She knows nothing about that whole process, although knows what happened and that i go for check ups, has no recollection of it , and my son was able to start school without thinking i was needing a transplant. My last creatinine showed 76, so my hope is the kidney will see my kids grow up. I know there is the worry the kidney will fail, but there is always that worry with kidney disease anyway. Personally i am happier that i had my family on the crappy kidney (was only born with one!), than risk the new well working one after ;) Totally agree with hotashel as well.

I have even met people on other kidney sites or have had a child while on dialysis. If it is something you really yearn for I would look into it more. i wouldn;t take the doctor's word as final. Weigh up the risks together with your husband, speak to an obstetrician who would care for you throughout, you would be very well monitored.
1982 - born with one imperfect kidney, no bladder
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
lainiepop
 
Posts: 121
Joined: Thu Mar 29, 2012 5:42 pm

Re: Coping with not having children

Postby midgetem » Sun Mar 15, 2015 9:23 am

Thanks all.

It is good to hear your stories and lovely to know things have worked out for.

I have spoken to my consultant who has agreed to set up a meeting with an obstetrician who apparently deals regularly with kidney patients.

I'm under the Oxford Radcliffe Churchill team and trust them so will see what happens. Will keep you all updated.

Thanks again for the replies.
midgetem
 
Posts: 10
Joined: Tue Mar 10, 2015 12:42 pm

Re: Coping with not having children

Postby fionadee » Tue Mar 17, 2015 7:10 pm

Can I ask if anyone in this thread has Polycystic kidney disease. That's what I have but I'm encouraged by some of the stories on here x
fionadee
 
Posts: 4
Joined: Fri Feb 20, 2015 9:02 pm

Re: Coping with not having children

Postby AmandaClare » Wed Mar 18, 2015 7:55 pm

fionadee wrote:Can I ask if anyone in this thread has Polycystic kidney disease. That's what I have but I'm encouraged by some of the stories on here x


Sorry, no, I've got Alports so no experience of PKD.

I agree there are some great stories on here of women having successful pregnancies with high creatinine.

I've said this on here before but I'll repeat myself :) : I looked a good bet on paper, as a transplant patient with rock-steady creatinine of 92 for years and years. My pregnancy went badly and I was delivered at 31 weeks and my son was in special care for 8 weeks (he's now 4 years old, bright as a button and full of energy).

The moral is that you just can't tell, every woman is different and every pregnancy is different.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
AmandaClare
 
Posts: 657
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Coping with not having children

Postby Thumps » Sun Mar 29, 2015 10:47 am

I have PKD, but I have never wanted children. I expect that they'll want to discuss the potential of passing on the faulty gene which causes PKD to any children you might have, genetic testing and such like. If your PKD kidneys are very large it could cause issues with there being enough space for your organs and the baby during the later stage of pregnancy, so again something they'll want to look at.

There are lots of impediments and risks but equally lots of success stories here, so do keep researching and discussing the possibilities, including that it may not be the right thing for you. Good luck :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
 
Posts: 1180
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Next

Return to The KPG Forum

Who is online

Users browsing this forum: No registered users and 26 guests