We just want a child! Need some advice.

[paddbear0000]

I desperately need some advise! As you know, I am not yet on dialysis, but have started the process of doing a preemptive transplant. My husband and I have recently been talking about having a child. I know, I have stated in the past that we would never have a child due to passing on my type 1 diabetes. But things have happened to change our minds. Anyway, we have come up with a few options. I refuse to be pregnant while on dialysis, nor do I want to push my kidneys over the edge and end up on dialysis because I was pregnant. Our plans are to either freeze some eggs and ask another family member to carry the baby (as it would also be too risky for me with the advanced state of my diabetes) or just go ahead with the kidney/pancreas transplant as soon as possible and wait the 1 year time period before getting pregnant myself.

What should we do? Which would be the safer alternative? Does anyone know anything about freezing eggs and IVF? Who do you talk to about freezing eggs or IVF? We're so lost and confused! The costs alone scare me! Help! Any advice/information would be greatly appreciated. All we want is a child, but this has become so complicated (and expensive)! How do people afford to do this?

[Sluff]

I think in this case age matters. If you are close to the magical 40 I would do the frozen egg thingy. If you are young enough to wait til after a transplant the rewards are probably greater to carry your own baby.

[paddbear0000]

I'm onl 30, but I don't want to be a 50 year old parent with a young child either.

[Ohio Buckeye]

We have a couple at chucrh who could not have childrenand they started taking care of foster children.
They have now adopted a little preemie who came home from the hospital to them.  He is a sweetie.
Another couple is doing the same and they hope to adopt a baby girl in their care.

[willieandwinnie]

Great reply Sluff. Couldn't of said it better. 

[Sunny]

Maybe freeze your eggs just in case.
However, your health is primary and if you choose to have children you need to stay healthy enough to be there for them. With that in mind, it may turn out adoption or fostering children is a viable alternative. While having your own children is a wonderful experience, I know many people who have chosen to adopt when unable to have children and the benefits have been equally as wonderful. Wishing you the best outcome.

[KT0930]

**Warning, LONG!**

I got pregnant and carried my son about 16 years after my first transplant. I spoke at length with both my OB and nephrologist before ever going off the pill, to be sure both were comfortable and felt it was a reasonable risk. Both had essentially the same reaction: "You've had this kidney for this long and you're stable. Yes, there's risk involved, but we'll monitor you closely".

I saw the OB about once a month for the first five or six months, then twice a month, and eventually worked to once a week. I was also having two ultrasounds a week (once for my regular OB, once for the high risk team he had me seeing). The pregnancy was mostly uneventful until about 30 weeks in, when I started having swollen ankles and elevated BP (I worked on my feet a lot, so thought the swollen ankles were from that). The week that started, the OB ordered me to bed rest, and that seemed to stave it off for a bit. I ended up in the hospital about three times in the last month of my pregnancy due to my BP getting too high. In fact, I was in one hospital over a weekend and my high-risk team was at another hospital, and I had an appointment with them on that Monday morning. I was discharged from the hospital in order to go see them.

Because my blood pressure had been so high (160/110) for so long (off and on for several weeks, and constantly for about four days), they decided that I needed to go ahead and give birth. Unfortunately, because I was so early (35 weeks), inducing did not work. They tried for 36 hours, until my son began going into distress and they ended up doing an emergency C-section.

My son had some minor problems at birth, but after spending about 36 hours in the NICU, he was released to go home and is today, at 9 years old, extremely healthy with absolutely no lasting effects.

Unfortunately, this MAY have been the beginning of the end for that transplant. My creatnine had been stable for the entire life of the transplant at 1.4, and the day after he was born, it was up around 1.9, and only went up over the next few years. I got another transplant (from my father) when my son was around 3 1/2. I knew this was a chance going into the pregnancy, and of course, would not change my decision, even knowing then what I do now.

Keep in mind, that aside from my transplant and high BP, which was controlled with medication, I had no other medical problems going into the pregnancy, so this may have accounted for the somewhat easy time I had.

It all comes down to how much are you willing to risk in order to have a baby? If anyone had said to me (which they did when I asked about a second child), "It could kill you", then there's no way I would have done it. But that's a decision each woman needs to make, no matter how good her health is.

Best of luck to you, no matter what you decide. I know it's not an easy decision, and it's a very emotional one. However, the rewards are endless!

[okarol]

Hey KT - did they change your immunosuppressants when you decided to get pregnant?

[KT0930]

okarol, no, they didn't. At the time, I was on prednisone and imuran (azathioprine), and both were determined to be as safe as anything else available at the time (1997/1998). They did change my BP meds, though I'm sorry, I can't remember what I had been on or what they switched me to. They changed those in December, and I found out I was pregnant in March.

[stauffenberg]

There is no question that freezing the eggs and relying on in vitro fertilization is the only way to go.  If you attempt a pregnancy while having to take extremely toxic immunosuppresive drugs to preserve a kidney-pancreas graft, there are many developmental difficulties the fetus could develop, especially in the formation of the nervous system.  Also, even with a kidney-pancreas transplant, you will still not be healthy, but both your renal disease and your diabetes will persist, though in much more moderate form.  Still, since you will just be on the edge of being able to keep your own body healthy and functioning, you won't have the reserve capacity to build a new human with any certainty that there will not be imperfections which will affect the child.  For example, it has recently been discovered that children whose parents are older when the children are conceived have a lower life expectancy and a greater chance of disease, just because of such a subtle influence as the egg and sperm being from older people.  Think of how much stronger the negative influence would be from growing in a body which suffers from diminished renal and subnormal pancreatic function, and is also flooded with toxic immunosuppressants!

Unfortunately, adopting a child is difficult, since most adoption agencies require that the new parents be healthy, on the theory that children who have already had to deal with the trauma of shifting from one family to another should not also have to deal with the trauma of losing a parent.

You might want to think again about the morality of risking passing on the genes for type 1 diabetes, since it is now well established that the risk for the development of diabetic kidney failure is also more genetically determined than it is influenced by blood sugar control.  So the child would not only face the risk of diabetes, but the risk of the worst of the diabetic complications.  That is a terrible burden to impose on a child from the instant it comes into the world.

[okarol]

Immunosuppression regimen is changed when a post-transplant woman decides to get pregnant. They usually advise you to wait at least 3 to 4 months before attempting to conceive so that you can be monitored for a possible rejection episode as a result of changing the immunosuppression regimen. Pregnancy in a transplant recipient is, by definition, a "high-risk situation.
Here's a link to read more info: http://www.medscape.com/viewarticle/481217_print

[st789]

Risk and reward.  No regret.

[Beth36]

I have done IVF 3 times.  The first time, I got pregnant and have a 3 year old son as a result.  The second cycle did not work.  I just had my third embryo transfer (when they put the embryos in your uterus) and am pregnant again.  Now, I don't have kidney disease (I'm on this board because of my mom who does), my husband and I have severe fertility issues but can get pregnant with IVF, obviously.  If you have any questions about IVF, I am more than willing to discuss it with you.  We are very open about IVF and I will answer any question you have.  I will warn you (you probably won't mind it as much as I did) it involves a LOT of shots--both sub cutaneous (those are usually in the belly) and intramuscular (in the hips above your butt--I'm doing those right now and I only have 3 more left!!!!!!!!!!!!!!).  Many clinics will freeze your eggs.  There is also a procedure called PGD which you might be able to do on your embryos to delete the gene that carries your Type I Diabetes....we didn't use it because our issues aren't genetic but you might be able to.  You will need to find a Reproductive Endocrinologist to work with and possibly a genetic counselor...there are a LOT of things they can do!  Don't give up!!!!!!  Like I said, I'm an IVF vet and have been there, done that...just let me know if I can help!  Good luck!!!!


Beth

[Wattle]

Risk and reward.  No regret.

  I have two beautiful children and NO regrets.

I wish you luck Paddbear and partner in your decision. Just remember .... no regrets.   

[glitter]

There is also a procedure called PGD which you might be able to do on your embryos to delete the gene that carries your Type I Diabetes....we didn't use it because our issues aren't genetic but you might be able to.  You will need to find a Reproductive Endocrinologist to work with and possibly a genetic counselor...there are a LOT of things they can do!  Don't give up!!!!!!  Like I said, I'm an IVF vet and have been there, done that...just let me

Good luck whatever you decide! Things sure have come a long way in the last 20 years, imagine,.. removing DNA of diseases that could hurt the baby, thats the best thing I have heard in a long time...

[kidney4traci]

I heard for Alport Syndrome they now know the genetic marker so they can probably take that out too.  There is still a 50/50 chance in most cases to get the gene as there are two partners going into it naturally.  Play with God or play God?

[lola]

I heard for Alport Syndrome they now know the genetic marker so they can probably take that out too.  There is still a 50/50 chance in most cases to get the gene as there are two partners going into it naturally.  Play with God or play God?

Our daughters Neph is trying to learn how to turn "off" the Alports gene

[kidney4traci]

Paddbear, I love your baby Zoe!  She (?) looks very sweet.  As much as I love dogs though, nothing compares to a child.  And really, even though my pregnancies and the actual birth too (one at home was awesome... another story) I know the real gift is the child.  No matter if you bring the child into the world or someone else and with or without your genes, you will love that baby like no other.  I had my second child at age 30, you are not too old.  Life is about living.

[stauffenberg]

Many posts here seem to take the view that it is all a matter of how the mother will feel about her choice, but the only moral issue is how responsibly the mother is acting in taking this risk for the unborn baby.

Unfortunately, there is no way to remove the genes either for type 1 diabetes or for the subtype of type 1 diabetes which is prone to renal failure, since at this point, the entire cluster of genes involved in both cases has only been partially and very hypothetically identified.

If the child is never born, then given the rarity of severe, genetically-conditioned illness in the general population, the odds are that its place will be taken up in the world by the perfectly healthy baby of someone else, bringing much more happiness into the world than the first alternative would have.

[Beth36]

Also, you are VERY young to be doing IVF.....I had my son when I was 33 and I am now 37 and will be 37 when my next child is born in November....so, age is just a number!  Good luck! 


Beth

[okarol]

I had my kids at 30, 33, 35 and 40. I didn't have any other health issues, so I was lucky. Planning well, being informed, getting good care, all these things will help you.
If I couldn't of gotten pregnant I would have adopted. Things work out for the best.

[paddbear0000]

Stauffenbrg--Most of the time, I value what you have to say. This time, however, you have really upset me with what you last posted. I don't know if it's because of my over-emotional state right now, or what, but am I reading this right? Are you actually telling me I shouldn't have a child just because there is a small chance (12% according to the latest research) that my child might become a type 1 diabetic?! I find this extremely insensitive and cruel. Am I supposed to be denied the one thing I want in life, something that we all have a right to, a child, just because of a minor chance of disease. And one that countless numbers of people live long and happy lives with? I know we've had this discussion before! And for your information, my kidney failure has been determined to have been caused by a hospital's incompetence, and NOT from my diabetes!   

[kidney4traci]

Just wanted to tell you that you are not alone in feeling extremely hurt by Stauffenberg's postings recently.  This is a very personal subject and you are seeking out advice from a public forum, so be aware you may hear things you really don't want to hear.  Guard your heart.  Take his letures with a grain of salt, and let your heart lead you in what you want to do.  We are here for you...

[okarol]

Don't let his comments get to you please. 

[glitter]

I dont think his comments were meant to hurt your feelings....maybe the reality he lives with is different then yours. 12% does not sound like an unreasonablly high risk, but I have heard of people with a 50% (of other dieases) risk saying it isn't too high....I guess it boils down to what risk can you live with? and what risk is okay (to you)to impose on another human being?
 I do hope you find a way to have a child that is good for you and good for the baby.