Tuesday, January 06, 2009

Pregnancy, Children, and Chronic Illness: Can Versus Should?

One of the most complicated chapters to write in
Life Disrupted
was the one about pregnancy and parenting when you have chronic illness. There were so many variables to consider, and so many questions that don’t necessarily have answers.

As one of my doctors once asked, just because you can get pregnant, should you?

That’s not something that can be answered in a single blog post, a series of posts, or a chapter in a book, but it’s one I think many patients face in some form or another. I know it’s one we face, and have approached from all sorts of angles the past couple of years.

What makes it such a complex question is that the variables that go into it differ from person to person. From where I stand, there are two major concerns that dominate this discussion: (1) getting pregnant and safely carrying a baby when you have chronic illnesses; and (2) being able to care for said children when chronic conditions flare.

Like the severity and diversity of chronic illnesses itself, these concerns run the spectrum. For example, one young patient in my book suffered from chronic pancreatitis and wondered how she would manage child care during her severe pain episodes were she to have a child. She also worried about passing her condition on to her child. Another patient with cystic fibrosis became pregnant and was prepared to sacrifice her life for her child—and that was a legitimate possibility. She faced serious health challenges before delivering her healthy child, and had to agree to have full-time help caring for her baby afterwards before her physician would sign off on her pregnancy plan.

(For another poignant story of the risks and challenges of pregnancy and childbirth with CF, check out Confessions of a CF Husband.)

These are just some examples. I know pregnancy and type 1 diabetes has its own set of blood sugar concerns, or that multiple sclerosis exacerbations may actually improve during pregnancy but MS medications should be avoided while pregnant, and the list goes on...

And of course, there are chronic conditions that can cause infertility. I’ve written before about how PCD affects both conceiving and carrying a baby, and those concerns are separate from the issue of being able to care for children during prolonged exacerbations or hospitalizations.

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation, the issue remains the same: How do you care for children on the days when you cannot care for yourself? Those of you already balancing these competing needs, I’d love to hear your input. I’ve collected some patient stories on this, but it’s a conversation that continues to evolve, and the more voices the better.

If your chronic illness influences fertility or causes high-risk situations, how do you draw the line when it comes to medical intervention, whether it’s assisted reproduction or deciding when it’s time for a pre-term delivery?

There’s another distinction that fascinates me, and that’s the distinction between wanting to be pregnant versus wanting to be a parent. I don’t think I realized there could be a distinction until recently, and maybe there isn’t for everyone…but when you’re weighing what’s best for the mother and what’s best for a potential baby and what’s best for a family, I think it’s a relevant one.

In terms of the “can versus should” question, I wonder how many women prefer adoption? Is chronic illness an impediment to adopting, or does showing your conditions are under control suffice?

It’s an exploration that’s been on my mind ever since I wrote this Salon.com-inspired post about choice, and I think this angle is a natural extension of any talk about children and chronic illness.

I realize these are deeply individual choices, ones tied up in personal preference, disease progression, risk tolerance, religion, economics, and health insurance, to name but a few of the factors. There are no easy answers, and there are no “right” answers. Not everyone can afford to have help with childcare, not everyone can afford medically intensive pregnancies or to not work during high-risk pregnancies that require bed rest, and not everyone who would like to can afford the cost of adopting or having IVF.

(I know adoption and IVF are expensive regardless of existing health status; I’m merely focusing this discussion on people who are considering these options in conjunction with chronic illness.)

I guess in the end the variables and “can versus should” deliberations boil down to a different consideration altogether: how to be the parent you want to be when with a body that doesn’t cooperate.

So, if you’ve been through this, are actively discussing it, have plans for parenthood down the road, or became sick after you had children, please chime in.


Anonymous said...

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation

Anonymous said...

Do you worry about heritability of your illness(es)? That has been my biggest concern - it took a lot of research and reflection before I was comfortable with the idea of biological children.

Anonymous said...

I was diagnosed with MS in 1980 and had my first child in 1984 and the 2nd in 1987. In 1990, I developed ulcerative colitis. I was sick and often exhausted through most of the first 15 years of child rearing(although I managed to keep working part time through it) but I don't regret a moment of it. My husband often had to pick up the pieces I couldn't carry, as did others (some I could hire, others were family and friends) but I didn't think we were different from any other family whose needs were greater than their capcity. I cultivated the village mentality. The most important question to answer is: do you want to be a parent? That's the key question, healthy or not -- but even more important if you're not healthy. Being an "unwell" or chronically sick parent is physically and emotionally stressful and you have to be up for the task. If you want it (barring genetic and other issues), then you can do it.

Kelly said...

You pose a lot of good questions here. I think it is a very individual decision and perhaps we are all at different places.

I'm 29. My husband is almost 37. Wanting to be a parent has been a dream of mine for a long time. But, I see how difficult my chronic illness (Chronic Migraines/New Daily Persistent Headache) is on myself and my husband. My husband has often had to be superman in taking care of me. I cannot imagine having a child in the mix and am in awe of people who make it work.

We've decided that if we have children, it will be through adoption. I don't want to put my body through pregnancy since my body is extremely sensitive to change in hormones.

But right now, having children is on hold. For us, the decision to change that would have to be dependent on when/if/how my chronic illness is better managed. Right now, getting out of bed is a victory. Having chronic and often severe pain, I cannot imagine taking care of someone else.

All that said, my husband and I take days one at a time. And I have a lot of hope for the future.

Anna's Spot said...

I was pregnant when we got sick from toxic mold. It took us a year to find the area of the house that had been growing the mold. A window was not flashed by the builder and it leaked for 10 years in the great sunshine state of Florida or should I say the humid, rainy place that loves growing mold. My daughter has developmental issues although she is at her age for school socially she has not gotten over the mommy phase and still will not go to daddy. My other daughter became daddy's little girl around the age of 3. Jaclyn, I am not sure when it will occur.
Good article.
Have a Beautiful Day.

Lyrehca said...

Fascinating questions, as always, and thanks for the link.

Getting and staying pregnant filled me with worry, at first because of my type 1 diabetes, later because of the (non-d-related) infertility, and then just because. When my son was born healthy, normal sized (diabetics tend to have larger babies) and with normal blood sugars (babes of d-moms tend to have low sugars at birth), I was so proud and thrilled that everything turned out OK with him.

Of course, that doesn't mean all is smooth sailing. While I can manage my diabetes well with my son, I do fear if he will develop diabetes as a child, just like I did. Reading a fellow diabetes blogger whose teenage son was diagnosed last month filled me with sadness for the family. It's one thing to manage your own chronic condition, but the feelings about having your child diagnosed with the same issue, would be overwhelming for me.

Brittney said...

I'm in no position to get pregnant (low body weight has messed that up) or take care of a child at the moment (trying to balance vet school and illness), but when the day comes I intent too. I forsee myself adopting to avoid the stress on my body, I really want to be a parent. Being an aunt isn't enough.

I think the concerns you raised are valid, and that a lot of thought has to go into the decision, but as Rosalind stated if you want to do it you can. That is how I view everything. Heck, that is how I got through last semester!

Unknown said...

Yes, I agree that motivation is very important. If you really want to be a parent, you CAN summon some strength you never knew you had. Just like if you want to write a book, it's essential that you're REALLY motivated.

But of course, as with everything, sheer attitude isn't always enough to overcome physical limitations. I knew this before having a baby over the summer, which I did despite my ongoing Chronic Daily Headache.

It has turned out to be easier than I had expected. One key reason is good financial resources, which I have more of since getting married to a non-liberal arts guy. We have a babysitter once a week, which helps. And my husband does a lot, including the early-morning feedings, allowing me to get decent sleep, the number-one variable in how I feel.

It turns out that the headaches became better during breastfeeding, which I've heard happens to some of us because of a new configuration of hormones. (Now that breastfeeding is over, the headaches are a tinge better.) I'm now thinking of getting work as a wet nurse...:)

I was also lucky that my son has a good temperment, so we got lucky with the genetic lottery. He doesn't cry excessively, and when he does, there's usually a good reason for it.

And the fun and delight of a baby is often a welcome distraction from pain, when I don't think about myself. Of course, distraction is not always enough to make chronic pain bearable, especially on the worst days, but it can help periodically.

Interesting that when it's YOUR baby, everything he or she does is exponentially more exciting than when they're not.

Thanks to Laurie for providing this forum! I'm very interested in this discussion about chronic babe spawns.

Paula Kamen
author of "All in My Head"

mack2380 said...

I am in my eigth month of pregnancy at the moment. I had to get permission from 5 different doctors, before I could begin trying. I also had a time crunch, because my doctors want me to have kids before my mitral valve regurgitation gets worse.
I am the first to admitt that I am extremly scared. My labor is going to be complicated, and I am most likely going to have a Crohn's disease flare after the baby is born. My body aches all the time, and I am so worried that I will really get sick after my child is born and beyond.
Then I feel my baby move, and I remember why I made this choice. My diseases control so much of my life, and there are so many dreams that have had to go on the back burner. Having a child will not be one of them.
I have made sacrifices to make this dream come true. I moved below my parents so that my husband and I can have extra help. I have signed up for a visiting nurse program. I am only working about 10 hours a week so that my body is not overly stressed.
This is not the choice for everyone. This was the dream for me, that I just couldn't let go. Being ill, we are forced to sacrifice so much. For me, this pregnancy is worth all of what I need to go through.


Unknown said...

My husband and I discuss this on a regular basis. We've been married for three years and I've been sick for 1.5 of them. We knew we wanted children when we got married, probably more than one. We always talked about both biological and adopting. But as things stand right now, there is no way on earth I could possibly take care of a baby right now. He has his hands full taking care of me and we are financially strapped.
Now, we are hoping in about 2 years we might have a different look at things, but it still saddens me to think that I may never be a mom.
Even if I wanted to put myself through a pregnancy or adoption, I've had to think about how it would affect my child if I was not able to take care of him or her. Especially when I don't know what the future holds. What if I can't climb the bleachers at sporting events, or even get out of bed to watch them get on the school bus in the morning. What if my illness continues to drain us of money, how will that affect raising a child.
If and when it does happen there will be no choice but to adopt the village mentality. I was raised by healthy parents but there were always other people present in my life whether they were related or not, and that is how I want my children to experience life. If I ever can or decide that children is an option.

Laurie said...

Thanks, everyone, for your input and experiences. It's such an individual choice, and it's helpful to hear from people at such different places in their lives.

In our case, we have the motivation but like many of you, we are working on the game plan to support that motivation.

Rosalind, I really like your notion of "it take a village." If there's one common thread through these comments and with other patients I've talked to about this, it's that in both preparing for a child and raising one, it takes a lot of collaboration.

I grew up with two chronically ill parents, and had a great childhood. They may have had a ton of struggles but they made it work and picked up the slack for each other. Now that I am looking at things from the perspective of a potential parent, it's helpful to think in those terms. I think they'd agree they were the parents they wanted to be despite serious illness, and they were definitely the parents I needed.

I know you face some tough choices, and I appreciate the candor. Let's hope the conversation continues!

And Lauren--8 months! Wow! That's great. I hope the remaining few weeks and beyond go as smoothly as possible for you.

Anonymous said...

Just a note to say hi, Laurie, about to have to lie down and just found your blog - mostly bedridden now.

I can't tell you the number of trips I made to Georgetown U Hospital. I worked in the Arlington Public Schools until finally becoming too disabled to work in 03 by a rare progressive disease that struck when I was 37.

Kairol Rosenthal said...

I have been living with cancer for 8 years and prior to diagnosis I never wanted children. My disease has only reinforced how selfish I want to be with my time and underscored my utter lack of desire to put my body through more changes. My husband and I cavalierly say, ‘If we ever change our minds, we’ll just adopt.’ Reality: I am still not cancer free and finding an agency that would deem me a viable parent would be an enormous challenge.

I’m thankful that we want to remain childfree, though I know I am in the minority of women may age – including those living with cancer. For my book Everything Changes: The Insider’s Guide To Cancer In Your 20’s and 30’s, I interviewed women who were willing to risk death in order to get pregnant. I will never understand this perspective, but still I stand by their side knowing that for them, this is the right choice.

Aviva said...

We were trying to conceive a second child when I was rear-ended by an uninsured driver in August 2006, which left me with chronic back pain. Actually, I was pregnant when the car hit me, but I miscarried two days later -- probably not caused by the car accident but the two are forever linked in my head.

We put conceiving another on hold while I tried to get my back in better shape. I knew from experience that even a healthy back hurts in late pregnancy and I couldn't imagine dealing with disk and nerve pain in addition to the stress a pregnancy would put on my back.

And then, right around the time I was considering the risks of back surgery, I got sick with my mystery illness in June 2007. At this point, I'm almost 42, and even if I miraculously was cured tomorrow, we would probably be reluctant to have another child at this point.

My husband and I have talked about whether we would still have Ellie, given the choice and knowing how sick I'd get just a few years later. I love my daughter with a passion I didn't predict, and I'm grateful we had her before I got sick. But would I do it again? I don't know.

It broke my heart to have to put Ellie into full-time daycare when I got sick. We have no local family, and no plans to relocate to be nearer to any of them. They're willing to come help when we have a crisis, but that's not a longterm solution.

Ellie is a happy kid, but because my illness interferes with how much I can do with her, she's gotten to the point where Daddy is the only one she wants at any particular time. She's happy to see me, of course, and likes attention from me. But Daddy is the one she wants. And that hurts, and I feel like a bad mom that I can't do more for and with her. My husband has it worse, in some ways, than a single parent because he has to take care of both of us. (Luckily, he's a great dad and loves spending time with Ellie, and he's very loving and takes good care of me too.) It's a lot to expect of a healthy partner, on top of being the sole earner. I know it's hurt his career that he's had to turn down travel and late nights at the office because he has to get home to take care of Ellie.

If I were making the choice before ever becoming a mom, I think I would have decided that it was too selfish to bring a child into our family like this. Having known Ellie and being a (reasonably) healthy mom for 2 years, it would kill me to not have her in my life, even as little as I get to do with her.

And I'd never, ever, feel like I could advise someone else on whether or not to go ahead and have a family because everybody is so different and everyone's health condition is different.

It is VERY scary to think that I might be passing down bad genes to Ellie, dooming her to the kind of health issues I have. But OTOH, it's just as likely for two healthy parents to have a sick kid, and I like to think that my health issues don't worsen Ellie's odds too much more than if I'd stayed healthy-ish. So far, she's been WAY healthier of a child than I was, and I hope that continues as she grows up.

Sorry, Laurie -- I didn't mean to ramble so much. :) Wonderful post and I've enjoyed reading the comments.

Lindsay said...

I live with rheumatoid arthritis and fibromyalgia, and I've been scared of getting pregnant since I was 10 years old (the year I was diagnosed). Last year - despite being on birth control - my husband and I found out we were expecting. I had never been more worried in my life.

Our beautiful baby girl will be two months old this Friday. I can honestly say that having my daughter is the best thing that has ever happened to me. There have been days where being pregnant and being a mom to a newborn have been incredibly difficult, and I am forever grateful to my husband for stepping up and always being willing to help out (it probably helps that he's a nurse). My support system is incredible, and I know that makes all the difference in our situation.

I know that everyone needs to make the best decision for themselves - but for me, this journey to becoming a mommy has been full of so much joy and I can't believe that I might have missed out just because I was scared.

Jennifer said...

while i never intended to have children, that decision has only been solidified as i've realised my chronic conditions and chronic pain. i'd never want to go through pregnancy and childbirth with my conditions (which are not very serious comparatively), and i really don't understand why anyone would. i can understand adoption, but i just don't get why someone would put themselves through extra pain and suffering. and THEN the possibility of passing the illness(es) on to children, and the possibility of the children not getting the best life possible because one or both of the parents can't focus their attentions on them fully because mommy/daddy's health is less than perfect.

Barbara said...

I have CFIDS, FM and CMP and had twins about 14 months after diagnosis. It was right then that my ex-husband started abusing me worse and went from remission to sicker than ever. I had no help, not even family.

I was banned from a mother's board who all "decided" that disabled people "shouldn't have children."

It's been 11 years and I am grateful every day for my wonderful kids but I still struggle with my health. Would I have them again? Yes!

Laurie said...

Thank you again for all your candor and insights. I hope to continue the conversation very soon with a follow-up post!

Natalia La Maestra Lueck said...

Wow, what a great blog. Been waiting a long time for some place to talk about all these issues. I am 33 and I have had a heart transplant since 27. I take immunosuppressive drugs and lots of other medications for the side effects, which are all toxic in one way or another. Since the transplant, I've acquired the HPV cancer causing virus and developed cervical and vulvar dysplasia. Some days are better than others, and I still manage to work full time and attend a doctorate program part time. I have dreams and I am not ready to let them go.
I've wanted to have a baby since I was a little girl. Not only am I getting older, but my chronic "conditions" and all the medications I need to take put me in a high risk pregnancy category. To be honest, I don't even know if I could get pregnant, given my period irregularities. My husband and I hope to adopt "one day" although that "day" feels so far away that at times I am tempted to give up the dream altogether.

PS love your blog!

Anonymous said...

Thank you for writing about this. I can relate to your confusion. I'm a 36 year old woman with rheumatoid arthritis, and I've been having trouble trying to sort out how I feel about going through pregnancy with a chronic illness and being a parent with a chronic illness. The more I read, the more confused I get. At some point, I'm just going to have to take a leap of faith because I know that I won't ever be 100 percent sure about the decision that I make.

A friend of mine who also has RA decided to have a baby and flared pretty badly after she had the child. About a year after having the child she came to the painful conclusion that having another child in her future was simply not in the cards for her. She had her hands full with her current child and while she loves being a mother, she really did not have any idea how hard it would be with a chronic disease. If she had to do it again, I know she would have the child. But she did have to adjust her future plans based on what she learned with her first child.

Anonymous said...

I’m older (45) and have SLE. My partner is a younger man in his 30s and he wants children. IVF has been put forth as our only option due to my age and blocked fallopian tubes. But as I think about what I want to do, my risks are doubled or tripled for complications. Age, lupus, and the possibility of multiples, preeclampsia, and flare ups scare me to death. I love him, and having his child would be wonderful, but I feel like it would ruin what tenuous hold I have on health. I know he would prefer a genetic child, but it’s going to have to be with a surrogate. I’m just not willing to take the risk and he understands that.

Anonymous said...

I am 32 Have SLE and Epilepsy and have beem happily married for 7 years. We are for the first time deriously discussing having kids. In the past about 5 years ago I was told not to, so I just put it out of my head, but I have visited two doctors and they both say yes but with risk. I feel very sad, not excited that they said this, as this now means a huge decision that will affect my and my husband life is left basically in my lap. I feel the awesome responsibilty of new life healthy or with my genetic problems, and feel just it would be so selfish to take a chance at hurting my baby. But then I look at my beautiful husband, and all his great qualities and know he would be the most magical dad. I am very confused. Has anyone felt similar?

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