We just want a child! Need some advice.

[Beth36]

When we were told our only option to have biological children together was IVF, we didn't look back.  We didn't care what people had to say about the moral or medical aspect of it.  My husband and I wanted children period.  We did what we had to do and are happy with that.....if we always did what other people said we should or listened to the first opinion, we wouldn't have our beautiful son and #2 on the way.  The way I see it is this, we didn't choose infertility, it chose us and we chose to deal with it OUR way.  You do what works for YOU and your HUSBAND.  You have a great deal of support here, don't worry about the one bad apple....

Beth

[stauffenberg]

Sorry for everyone's distress, but I would suggest that the distress is something which is in fact created by nature, and I am just pointing out the moral dilemma that follows from nature's cruelties, not creating them myself.  Everyone has a moral duty to do the best for their future children, such as not drinking alcohol and remembering to take folic acid during pregnancy.  This duty is especially strong because future children are helpless and totally at the mercy of the decisions we make for them, and we cannot consult them to know what risks they would be willing to tolerate, so we must always be extremely conservative in the risks we accept for them.

When Michael Jackson held his infant over a balcony of his hotel room high off the ground, he was condemned worldwide for his action, yet this act exposed the baby to less risk of serious health problems than a 12% risk of type 1 diabetes would.

When I was in my twenties and thirties there was considerable pressure on me from other people to become a father, but I refused because I did not feel morally entitled to accept the elevated risk of passing on type 1 diabetes on behalf of an unborn child whose agreement to accept this risk I could not obtain.  People tried to tell me the risk was small, or that diabetes would be cured before my child would develop type 1 diabetes.  But that was more than 20 years ago, and no cure has materialized.  While I regret not having had any children, I would make the same decision again today as I made then, because I don't feel it is my moral right to expose a child I am supposed to be protecting to even a small risk of a horrible disease.

Everyone has a legal right to have a child, but law and morality do not always overlap.  It is up to you to decide whether you feel you have acted properly as protector of your future child by your decision to proceed.

[ODAT]

You know, whatever we know about the illnesses that we have or that are in our family tree - there are even more that we don't know about! I don't know everyone in my family. My mom doesn't even remember all of the illnesses that her family has. Not have a baby because of that - especially with our current and continued growth of knowledge on how to treat these ailments that may or may not happen? I don't think so. A child has just as much right to be here as the parent has to make the decision to have him or her. I couldn't imagine life without my sons. I know they would tell me that they were glad I had them.

You can be in the most perfect health and then have complications during birth that affect your child's health. Shall we not take that chance and all be barren?! There is cancer, diabetes, kidney disease, heart disease, and more I'm sure in my family medical history. There is also the 'moral' awareness that some people lean on and they say "I would never bring a child into THIS world. Too much suffering going on."

When I had my youngest, the doctor decided to let the attending nurse take him out. Well, she dropped him back in and he ended up swallowing merconium (sp?) and was in intensive care for 5 days on intravenous antibiotics! No long term after affects thank God. You just never know and to put your life on hold for such a menial thought is ludicrous.

Paddbear, you've made some good decisions and you and your hubby just have to decide which one will work for you both. You are in my prayers that this child comes to fruition. 

[stauffenberg]

Obviously, we are only morally responsible for the risks that we a) know about in advance of our decisions and that we b) have good reason to regard as risks greater than the normal background level of negative chances in life.

Everyone here seems to want to speak only for the interest of the parents in having children, not for the interests of the child, which our society normally takes as primary.  It is arrogant to make the assumption for an unborn child that it will want to live a life with some terrible disease, when we can't know this in advance or seek the child's agreement to the perilous experiment that life will somehow turn out to be worth living despite the disease. 

If suicide were simple, and people could just vanish painlessly in an instant if they found their lives intolerable, taking the risk of disease for one's future children might be tolerable.  But the blind, irrational instinct to live no matter how awful life is always opposes the rational decision to escape it, so when we bring someone into the world with a high risk of disease, we bring them into a trap from which they cannot easily escape.

[paris]

First, Paddbear, I hope everything falls into place and you get your wish.

Second, as someone said, it is an open forum, so we need to beable to express ourselves without fear.  A marvelous member of IHD once told me that she thinks of everyone as a family member----Goofynina was the funny sister that keep us laughing, someone else is the go-to guy with all the answers, another is the grandmother who just wants everyone to play nice and another is the known cynic.  We are all so different, in different stages (both physical and emotional).  So try not to take any one post personally.  The topic of having children when you could possibly pass on a disease has been discussed a few times and it will always be a heated subject, because it is so personal.   No one has the perfect answer for you and your husband.  With the help of you doctors, you will beable to make a very educated desicion and I wish you all the best during this journey.   And don't think of adoption as a last resort; there may be a precious child out there just waiting to call you Mommy!    Good luck

[Sunny]

In the end, I think it would be best to follow the advise of your medical team.
They know the intricacies of your health issues along with how your health issues could effect your own health and an unborn child's health.
If having a child proves too risky for either you or an unborn child, then there are wonderful children out there waiting for a loving adoptive
family. I know of many loving families blessed with adopted children.
The need for having your own child, at any cost, is unreasonable. But after weighing all the issues, as discussed here, and most importantly as discussed by your medical team,
leads you to pregnancy ---- then I wish you and you baby good health.

[okarol]

My parents passed on alcoholism and polycystic kidney disease (and that's all we really know about so far.)
Had they known, perhaps they wouldn't have had any children.
But I am happy to be alive, and so are my 3 siblings.

[Wattle]

My parents passed on alcoholism and polycystic kidney disease (and that's all we really know about so far.)
Had they known, perhaps they wouldn't have had any children.
But I am happy to be alive, and so are my 3 siblings.

I too have PKD and am HAPPY to be here. Life throws us all kinds of curve balls. If it wasn't PKD it would be something else.
You never know what is lurking around the corner... breast cancer gene, prostate cancer, bowel cancer to name a few that have genetic links. A close friend died of leukemia at 31. We will never know what is ahead of us.

Stauffenburg,
You always revert to suicide. Is the bitterness you hold actually anger towards your parents for having wanted a child?
"when we bring someone into the world with a high risk of disease, we bring them into a trap from which they cannot easily escape."
It is clear from all your postings that you are not a parent.

[stauffenberg]

I'm not a parent, but I'm the only one here defending the rights of children not to be exposed to risks they did not agree to accept.  Ironic, isn't it?

My family tree was riddled with cases of type 1 diabetes, many of which involved unspeakably hideous outcomes.  According to the phenomenon geneticists describe as 'genetic anticipation,' the disease was striking earlier and more viciously in each succeeding generation.  I put a stop to this burgeoning cruely of nature, however, and now I am both proud and happy to think of all the people my action has spared the miseries of this fate.  The way family size grows over the generations, there could have been hundreds of people in a few generations from now who would have been suffering from diabetes if I had not stopped the juggernaut no one else in the family had the good sense to oppose. 

When I survey my life, I would say that the most important and morally significant thing I ever did was not to have children.

[okarol]

It sounds like you made the right choice for yourself, Stauffenburg.

Did you know that no baby gets to agree or disagree with whether they are exposed to any kind of risk or not? It is the role of the parent. It is their right to make the choice for themselves and their offspring.
Some parents are great, some suck. Some people should never have children, but they do. Do we think that every life will be risk free, pain free, struggle free? Of course that's what a good parent strives for.

[Zach]

When I survey my life, I would say that the most important and morally significant thing I ever did was not to have children.

[ODAT]

We have learned so much from people that are not perfect. I am watching a show on savants. It's the actual person whom the movie Rainman was based upon. Description of savant:
Savant syndrome describes a person having a severe developmental or mental handicap with extraordinary mental abilities not found in most people. This means a lower than average general intelligence (IQ) but very high narrow intelligence in one or more fields. Savant syndrome skills involve striking feats of memory and arithmetic calculation and sometimes include unusual abilities in art or music.

There is a woman who sings opera, plays any instrument by ear - not just plays but is excellent.

I don't want to detract from paddbear's situation, just that we all have a right to be here. There is no guarantee in life that you won't be affected by something knowingly or not. There's always a chance that despite the odds you will have a healthy child even though your past is riddled with illness. I don't think anyone is going to change anyone's mind, just when someone is making an informed decision about something so important - we should support them and give them hope. We don't always have to show the other side of the coin when the payment on the one side is enough.

[skyedogrocks]

This is such a big decision for you and I totally understand how hard and stressing it is.  I would talk to your OB/GYN about this and perhaps see if you could talk to a high-risk OB/Gyn and see what they say.  I know it is harder for a Type 1 Diabetic to carry, but there are so many things a Dr. can do to help, that I think it's worth a shot. 

I have infertility issues (Polycystic Ovarian Syndrome) and Rob has some due to his diabetes, so we got help with Fertility drugs.  After a few attempts and nothing happening we decided to go for adoption.  We are lucky to be adopting through DSS/Foster Care, our son means the world to us.  Our social worker knows all about Rob's Type 1 Diabetes and Kidney failure, but knows that he keeps himself in check with dialysis and visits his Dr's regularly.  They want at least 1 person who doesn't have medical issues.  We thought a lot about having a child and what seeing Rob on dialysis would do to them.  However, my son is fine around it (he just turned 9) and is sympathetic and supportive.  Just letting you know this is another option out there for you.

In the end, only you and your husband can make this decision.  Bringing children into your life will definitely make your world happier.  You are great with your dogs, I know you will be a wonderful mother!

[petey]

paddbear --

I have purposely stayed away from replying to this thread because having (or not having, in my case) children is a very sensitive subject and brings tears to me.  But, I think I want to say something now.

Marvin and I could not have children.  He got sick six months after we were married with a serious blood disorder (he has a disease called ITP -- he has low platelets because something unknown in his body destroys the platelets as soon as they are made).  When that happened, we agreed to some experimental drugs for Marvin, in order to save his life.  We were told then that the drugs could possibly make it impossible for us to have children in the future.  At that time, the risk was worth it -- we were saving Marvin's life and very possibly giving up the chance to ever create "new" life in the exchange.  It was worth it then, and, given the same option, we'd do the same again.

For almost nine years (as Marvin returned to "normal"), we still wanted -- and tried -- to have children.  We tried fertility drugs in the hopes that they would be successful.  No luck!  The IVF was just too expensive an option for us.  We considered adoption, but we tried to hold out a little longer to see if we could have children on our own.

Nine years into our marriage, Marvin was diagnosed with ESRD and started dialysis (no warning -- and, the doctors have said, no relation to the blood disease he has).  We were told then that adoption was out of the question because of Marvin's health issues.  We resigned ourselves to the fact that we would never have children.  We've been married now for 22 years, and the ONLY sad thing that has ever occurred in our marriage was when we knew we'd never be parents.

Marvin and I love children.  We have both volunteered for 22 years in the youth recreational activities in our community.  We  coach youth (under age 12) baseball teams (except this year, we're taking a break), and Marvin has coached basketball and football youth teams for years, too.  I'm a teacher -- and love my job and working with young people every day!  We have been told by everybody we know that we'd be good parents, and I think we would have been.  We have patience, a lot of love to give, and a desire to have children.

At first, I thought the fact that we couldn't have children was a curse from God.  Then, I realized that I couldn't have handled all that Marvin's been through and taken good care of children, too.  I think I would have been overwhelmed.  Perhaps God was looking out for me after all!  But, the desire to have children has never gone away (I'm 45 now, and Marvin is 52), and, in fact, it has become harder to accept after all these years (rather than easier).  Other people our age are beginning to experience grandchildren -- oh my, how wonderful that must be!  My head tells me this was best for us (no children), but my heart just won't accept that.

As someone who has never had children and can never have children (and not by my and Marvin's choice), I would say to you, "Don't pay any attention to the statistics and the could-be scenarios.  Go with what's in your heart."  I know for a fact that Marvin and I would have been thrilled with any child -- even one with diabetes, kidney disease, heart disease, physical handicaps, mental handicaps, etc.  We would have, through our example, taught our children to live -- and live happily -- with any disability or any disease that they might have had.  We would have loved them unconditionally and passed on coping techniques that would have made them strong, successful, honorable people, and we would have never regretted bringing them into this world even if the world and they themselves were not "perfect."

You have to decide for yourself what's best for you and your future children.  Search your soul and see what the answer is -- if it's to go ahead and have children, go after it with everything you've got!

[paddbear0000]

Thak you petey. After reading what you had to say, you made me feel better about the choices we face. Obviously we are a long way off from a final decision, but you, and in fact, most of you have made our situation a lot easier to deal with. 

[The Wife]

My mom had diabetes type one with a weak heart from another illness she contracted as a teen, and a life filled with poor health.  She had four miscarriages and gave birth to one still-born daughter.  When it became clear to her that she would never have children, she adopted.  I was the first.  Maybe things were different fifty years ago and the rules in Canada are different than in the States, but she did indeed become what she wanted the most. 

Illness to me was just a part of life.  I learned about diabetes, needles, hospitals, diet, and all that goes with it but never did I think that adopting me, my sister, my brother, or the twenty years of fostering she did was something she shouldn't have done. 

She passed away at the age of seventy and the way I look at it, I'm grateful for all she taught me.  In fact, I thank her for bringing me into a home where illness was apart of life because now, with my partner on dialysis, I can't help but feel that I became her child for a reason.

If I were the one with illness, I don't know what I'd do but I do know that we all go through some form of suffering in this life and through this suffering, we can find the most beautiful gifts given. 

My mom was one of them and whenever I think of her, a line from a song she sang always runs through my head....what will be, will be.

[del]

Paddbear go with your heart. I read what petey wrote and it brought tears to my eyes. Hubby and I have been married 23 years and no children.  We waited a while first when we got married thought we had lots of time but things didn't work like we had planned.  I did get pregnant in 1990 but miscarriaged at 3 months.  Keep trying but no luck after. We both love kids and would have made good parents.  I teach grade 2 and they are my babies.  Like petey most people our age are in to the grandparent stage and we are not even parents.  So paddbear go with your heart if you really want a child go to your docs and get advice.  If we had to worry about all the things that could be passed on to children or what could happen to them nobody would ever have any children.  Live for today!!!  face problems when and if you have too. 

[KT0930]

padda, I was once in a similar situation to you. I wanted a child more than anything else in the world, and as you know from my previous post in this thread, I got pregnant and now have a wonderful 9 year old son. I never had to think of it from the perspective that petey and del have, but they both make a very good point...this is not a decision that is going to get easier to live with if you don't go with your heart. Absolutely be smart about it, and talk to your doctors, and really PLAN, but don't decide not to have children just because of a "what if".