Tuesday, September 21, 2010

Was it wrong to have my children? Having babies with genetic disease

My kids are basically all grown. This means I had them a l-o-n-g time ago *grin*. Back then, doctors knew about autoimmunity, but hadn't yet identified most of the antibodies, nor ways to test for them. An ANA combined with symptoms back then was the only way to "test" for an autoimmune disease. Those results, combined with your symptoms were important clues, but doctors often got it wrong.

Treatment for these diseases consisted of - well - very little. My doctors' choice was usually steroids. Every time I had an "issue", out came the syringe and prescription pad. Oh yes, they surely did make me feel better, but I worried about what they were doing to my body.

I had a tentative diagnosis of Lupus back then. They didn't call it tentative, but hindsight makes me feel that is what it was when compared to today's diagnosis. I was told virtually nothing about the disease other then "come in when you're sick or hurting, we'll up your steroids".

Right before I chose to get pregnant with my son I was told I probably wouldn't be able to carry a baby to term (other problems). Nobody told me not to try, in fact I was encouraged to go off the meds and try. I was naive and thought I could handle it (miscarriage) okay. I think they were too. To my surprise, I got pregnant in only 2 months. I wanted to keep it a secret, but hubs told the family. Within 2 weeks, I stood up from the couch and miscarried. It happened so fast I didn't really have time to flare.

A week later, I was still bleeding, and got an appointment with an OB/GYN who explained to me that there was nothing he could do. The exam showed I'd dilated, but he worried the miscarriage might be incomplete and I'd need a D&C. I asked for an ultrasound (fairly new back then) and got the first photo of my little boy at 5 1/2 weeks. I had miscarried one of two.

I had beat the odds again.

When he was born, he had a handful of problems, one of which was a horrible rash that appeared within the first few weeks. I was told not to worry about it, that sometimes happens to babies of Lupus moms. I worried I had "given" him Lupus, but was told it would pass. It did.

When we decided to get pregnant with my second child, I went to the doctor to get ready for another attempt. Nobody ever mentioned to me that I shouldn't get pregnant. Their reasoning: I was one of the few who got better when I was pregnant. This was reason to stay pregnant in their minds. Still they kept a close eye on me with weekly visits and ultrasounds, just to be sure. I kept my "baby kick" diary religiously.

Both births were eventful as I experienced threatened pre-term labor with #1 (including bed rest for 2 months) and pre-term labor with #2 that involved a fairly lengthy hospital stay and a lot of medicines. She was born early by a month, but healthy and still quite big. I waited for the rash, but it never came.

After both births, I flared horribly, ending up in the hospital both times. Nobody told me it was a flare, but I recognize the symptoms now years later.

I'm told that, back then women were frequently told not to have children because their diseases frequently would flare, usually very seriously. A very small percentage get better, and lucky for me I fit in that category. I don't know anyone with Lupus who was told that they could pass it genetically, and that might be a reason not to try to get pregnant. Many women simply couldn't get pregnant because of the meds or their symptoms. Not a lot has changed since then.

This brings the question I hardly dare to ask myself - Would I have still chosen to have my children if I knew then what I know now? I'm selfish, because I think I probably, naively, would. I can't imagine my world without my kids, sick or healthy. How do you make a decision like that after the fact?

Both have autoimmunity. I passed on some fairly icky genes. Both are happy to be alive though, and so far they've lived well and have bright futures. I've asked them if I made the right decision. They're both happy with my choice :)

So, where do you stand on the ethics of reproduction when a parent has a known genetic disease? What did you decide? Why?

What did your doctor tell you? Did you agree with your doctor?
Then, the hard question. I guess I don't really expect to get many answers but: Would you change it if you could do it again?

What are members of your communities saying??

Comment by Amy K on October 6, 2010 at 8:52pm
Ugh, Ellen...this question or questions are brutal.
Do we even bother looking back, knowing that only hindsight is 20/20?

I developed fibromyalgia as a result of my second pregnancy. I was very sick throughout the pregnancy and have been "sick" for lack of a better word, for 5 years since. I doubt my daughter would say she wishes her brother wasn't around (depending on the day) but I know that she identifies his birth with "when the happy went away". (Yes, you can hear my heart breaking.) She shared this information with a relative, I don't know how to get over that, or what I could have done differently.

If I had not had a second child, would I be healthier or happier today? I can't imagine my life without my little boy, he brings me so much joy. He brings a whole new dimension to my life. I will admit, I have secretly thought to myself, "if only I did not have a second child"... but only for very brief and fleeting moments. I am so richly blessed by my children. It makes me tearful to think that I ever even secretly thought that, but I suppose it is only natural when I know this one event is what changed my life so dramatically. I can only hope and pray that the future holds lots of good things in it and that my children will never feel like I regretted bringing them into the world, because my life is so much better for it, no matter what the cost.

On the other hand. I was told not to have any more children. I was told that it would likely "do me in". This is mostly because of the severe depression, anxiety, and hyperemesis gravidarum (vomiting throughout pregnancy), hypertension, etc. that I experienced both times, worsening with each one. I have had times when I wanted more children, but have known that it is not what is wisest for me, my health, or the health of the children I already have.

None of this really directly relates to your question as I am not dealing with genetic disease here, that I know of, but it is similar. Just had to share my thoughts. And truly, how I love my children!

Comment by Ellen S on October 7, 2010 at 3:15pm
Awwwwwwww!!!!! They're beautiful!!!

Thank you for being so candid Amy. It means a lot. I know where you're coming from with the guilt aspect. Obviously nobody planned for this to happen to either of us or our kids. Like you, I didn't have the third baby I planned because - well - I had my hands full enough with two high needs kids. I couldn't imagine doing it a third time, much as I wanted to and tried. I was already sick by then and trying to ignore it.

You know me, always trying to look at the positive angle...

What if we hadn't gotten sick? What would our children have grown up knowing? Is it really good to grow up in a 'perfect' situation? To never experience adversity?

On one hand, I would have sacrificed anything to have been able to give them the childhood I wanted them to have, instead of the one they got. On the other hand, both my kids have an enormous understanding of chronic illness. They look down on no one and help whenever and wherever they can. (Do you think I'm just a little proud of who they are now?) Their capacity for empathy, sympathy, understanding and compassion came from somewhere. Yes, part of it was purposeful, but they could just have easily turned their heads and rebelled.

I believe children learn what they live and see and experience. I can only imagine that your kids are going to grow up like that as well, because I know the roll model that was given to them - you.
Comment by Amy K on October 7, 2010 at 11:01pm
Thank you Ellen... thank you...

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