Risks of T1 Diabetes and pregnancy

January 30, 2009 9:56 AM

As a Type I diabetic, the two risks of 1) passing the genes for diabetes through the population and to your child at a 100% greater risk than in the general population and 2) pregnancy-induced retinopathy (which could eventually lead to blindness) make me seriously doubt whether pregnancy is a viable option. How did other people think about these issues, and what made the difference in making this choice?

I have Type I (juvenile, insulin-dependent) diabetes; I’ve had it sine 1985. Over the past ten years at least, I’ve been very well-controlled – when I was in highschool and college, I struggled with it, and didn’t keep great control then. I’ve used an insulin pump for almost three years now. My A1cs have been under 6.5 for at least three years straight now, and the only complication I have yet experienced is a case of trigger finger, which cleared up with a cortisone shot a while ago and hasn’t yet come back. I’m otherwise pretty healthy, though I need to go more exercise than I do.

I’ve been doing a lot of research lately about Type I diabetes and pregnancy. I know that many diabetic women can – and do – have healthy biological children. But there are two issues that I can’t really decide how to think about. I’d love input both from diabetic women who’ve thought about these things, whether they decided to have children or not and anyone who has some good insight into these. I think, in the end, the choice of whether or not to go down that road has to do with an individual’s personal risk tolerance – but I’d greatly welcome insight from others to help inform my thinking.

The first issue is the issue of transmitting the disease. Leaving aside the question of whether I have a responsibility not to pass my genes on in the gene pool (which I do consider), I am concerned about the likelihood of passing the disease on to a child – and how I would manage to deal with the consequences of having done so. The ADA’s web site compiles the statistics conveniently: in my case, I am older than 25 (risk to child: 1/100), but I developed the disease before age 11 (doubles the risk – 1/50). I do not believe that I have type 2 polyglandular autoimmune syndrome – although, I don’t actually know – which would make the risk 50%. 1 in 50 is a 2% risk; that’s as low as the risk of a child developing AIDS if the mother has AIDS if proper preventative measures are used. It’s the approximate risk of a child developing Downs for a mother age 42-43. The risk of a child having Type I in the general population, however, is 0.0037% - 0.02%. Which, if I’m doing my math right, means that by having a child myself, I would be increasing the risk of my child having this disease one hundred times. How could I justify that as a parent? Isn’t my job to always strive for the best health and safety options for a child? In that case, how can I expose a child to one hundred times more risk of a disease that I find extremely arduous and difficult – and one that has scary consequences? Also, anecdotally,, most biological mothers with Type I that I have encountered have at least one child with Type I.


The second issue is the health risk to me. The complication of diabetes I fear most is blindness. When I initially examined the idea of pregnancy with my endocrinologist, she mentioned that if I wanted to do that, we would need to keep a close watch on my vision because the one thing they see in pregnancy is eye complications – ‘even in women who haven’t had them before.’ I researched the issue a lot – and I’ve come up divided. Some articles say that pregnancy will result in retinopathy even in women without pre-existing eye damage; some say that good control is key and you can get through pregnancy without damaging your eyes. Part of me thinks that even a small risk of causing damage to my eyes isn’t worth it. But then, still other articles say I’m going to get retinopathy anyway, no matter what I do. And then, the other part of me says – if I’m going to get it anyway, well, then this is a non-issue.

How did people think about these issues? What really made the difference to you? (In the interests of full disclosure, I’m not even sure I want to have children in the first place – but I figure I should try to work this stuff out as soon as I can, and if we do decide we want to have kids, we’ll also have to decide whether we want to try for bio-kids or adopt.)

posted by mccn to health & fitness (17 comments total)

My understanding of the genetics of Type 1 is that there need to be inherent risk factors present in both parents. Perhaps there is more research to indicate that one parent w/ Type 1 poses an equally significant risk?

My husband has Type 1.
posted by hellboundforcheddar at 10:05 AM on January 30

FWIW We have two young children- as of yet diabetes-free.
posted by hellboundforcheddar at 10:06 AM on January 30

And also BTW- congratulations on your A1cs! That's great. It takes a lot of commitment every minute of every day to maintain those levels.
posted by hellboundforcheddar at 10:09 AM on January 30

(I am REALLY sorry for the quadruple posts- multitasking at work)

One other point: would it be worth it to research the outcomes of folks who immediately address symptoms of retinopathy? If retinopathy is almost a given w/ pregnancy - perhaps there are immediate steps at onset of symptoms which can be taken to minimize damage and stop the bleeding. I am remembering my husbands friend w/ Type one had sudden retinal bleeding due to retinopathy- on a business trip- and with quick attention his eyesight was restored and long term damage was mitigated.
posted by hellboundforcheddar at 10:14 AM on January 30

Mr. F and I weren't intending to have children anyhow, but two of the factors that made that more compelling for us were his family history of Type 2 diabetes-- his grandfather had it, his father has it, and he has it, although his A1c is similar to yours-- and my own traumatic eye damage, which has now sort of devolved into retinal issues.

I can still see even with my retinal issues. I don't see as well as someone who's never had them-- there's some retinal scarring, which manifests as uncorrectable blurriness and one spot where my brain is just filling in the blanks on the periphery of my right eye. At the moment, I'm dealing with a retinal hemorrhage in one eye, out near the natural blind spot, so I've got a funny-colored blind spot there. The docs assure me it'll clear up, but may leave a "footprint" in my vision.

Retinopathy is treatable (but not curable) these days with injections of medications like Avastin and Lucentis-- but if you're pregnant, you and your retinal specialists will have to weigh the risks and the benefits of using those therapies. Retinopathies can be treated with lasers, too; I've been there and done that, and it wasn't painful, but it does leave retinal scars. More serious retinal complications can require surgeries like vitrectomy (removal of the vitreous humor in your eye to prevent further damage to the retina), cryopexy (freezing tears in the retina to weld them shut), and the installation of a scleral buckle to hold the retina together and prevent further damage.

Believe me when I say that the scleral buckle is a very nasty bit of surgery-- bad enough that my docs forbade me to Google it in the days before I had one in March 2003, lest I opt to just not show up for the procedure. It is very painful, takes about two and a half hours in the OR, and requires about a week of recovery time, during which you sleep sitting up, eat a lot of the synthetic narcotic painkiller of your choice, and try not to do much else. It wasn't fun. I would do it again if I had to, though, because I had a good outcome-- my docs bring their residents in to marvel at the surgical site-- and there was no way I could've let the retinal tear I had go untreated.

Retinal shit is scary, but it's not an all-or-nothing proposition. I've been dealing with mine for about six years now, and I still hold down a job doing fiddly image QC stuff for movies. Good specialists and top-ten eye centers make it a lot easier. Getting a therapist who specializes in the concerns of eye patients makes it a lot easier. Shit, most of those guys specialize in the exact issues of diabetic eye patients, not people like me who ate it in an accident, so you may want to see if you can find one in your area to talk this over with.

If having your own kids is important to you, I certainly think you should have a lot of long talks with diabetic eye specialists, your endocrine team, and so on and get a plan in mind before you conceive. I can't make the call for you, because no one can really know how any specific case will go. I can tell you what I've been through with my retinal treatment, that I did not want to risk further retinal issues from pregnancy and labor, that I did not feel that I could give kids 100% of my devotion as long as I was dealing with disability and trying to have a career, and that my husband didn't want to pass his diabetes to any children. He went out and got a vasectomy, and we decided that if we really ever did have the urge for children, we would adopt-- that might be an option for you, or it might not.

Good luck.
posted by fairytale of los angeles at 10:43 AM on January 30

(NB: When I say retinopathy isn't curable, I mean diabetic retinopathy-- retinopathy caused by hypertension is reversible by the simple expedient of fixing one's hypertension, according to my doctors.

Also, I'm not a doctor and will happily stand corrected by any actual diabetic eye disease specialists who happen by. I'm just someone who got into a nasty car accident and has been dealing with eye complications for the eight years since.)
posted by fairytale of los angeles at 10:47 AM on January 30

One hundred times a very small number is still a very small number. Plus transmitting these genes are most definitely not a 100% certainty as written in your question (I realise that's likely a typo, but is still an indication of your confusion). I don't know a lot about the genetic aetiology of type I diabetes specifically, but usually with multifactorial inflammatory diseases like this it's not caused by one specific gene mutation but rather accumulation of a number of mutations that infer greater risk. So you'd be passing on some or all of those risk factors. But you might also be passing on mutations that infer decreased risk, or your husband might be, and there may be environmental factors that interact with the risk factors to increase disease susceptibility. That's why risk statistics so often have such a big range, for example the 0.0037% - 0.02% range you quote, that's pretty vague. You also need to look into things like your your husbands family history (e.g. are you the first in the family to develop diabetes?), plus it may be possible to test for known mutations like you would for say, Huntington's or breast cancer (I have no idea if this is possible or ever done for Type I diabetes).

Basically what it come down to is that the genetic situation is a lot more complicated than you're outlining and the risks aren't so certain. You really need to talk with a genetic councillor about this before you use it as justification for making such an important decision. They will have some real information about this disease, heh which I don't, and will also help you interpret those statistics you've been looking up.

It may be that the retinal thing is a deal breaker, I don't know anything about that part sorry, but you certainly have a lot of room for investigation and deciding about the genetic side still.
posted by shelleycat at 12:10 PM on January 30

Avastin and lucentis have only recently been used in diabetic retinopathy and are not standard treatments for DR. They do work for wet AMD, but there have not been big studies looking at their use in DR.

Most people with Type 1 diabetes do get some retinopathy at some point in their lives. Some people just have low levels (a few cotton wool spots and MAs) and extremely slow progression and have nearly no vision symptoms. Other people have more aggressive disease and progress quickly to new vessels and more serious retinopathy with vision effects. It is unknown why some folks have proliferative disease and others don't.
posted by sulaine at 12:14 PM on January 30 [1 favorite]

On your first issue about transmitting the disease. My wife is Type I and has been since age 12 or 13. We had our kids back in the mid 90s. IIRC, it was believed that there was a slightly elevated risk of passing on the tendency to get diabetes, but it wasn't anything really significant. It's been so long that I don't remember the details. My son was in some study as in infant where they were testing for some genetic marker that indicated a predisposition to become diabetic. I don't remember the details other than he didn't have it. Our kids are 13 and almost 15 today, and neither is diabetic.

However, as the risk of sounding rude, I think your concern is somewhat misplaced. It's not like you are passing on pancreatic cancer with it's 5 year 90% death rate. Type I diabetics that maintain tight control can do pretty much whatever they want. There are people playing in the NFL and MLB with Type I diabetes. But I bet you already know all that :) There are a lot of things your child could be born with or contract that would have a much worse impact on his or her life than diabetes. Not that I'm encouraging you to worry about that either...

On your second issue...everybody is different and there are no guarantees in life. My wife's endo back in the 90s was very insistent that Type 1s be done having kids by age 30. Again going on long ago memories here, I do think I remember having the eye conversation but the endo believed it wasn't a significant risk for a well controlled diabetic. Again, this was 15 years ago, they might have better data today. Both of my wife's pregnancies were fairly normal, or at least lacking any complications that could traced back to being diabetic. She has maintained her A1c in the 6.0 neighborhood for 15 plus years now, including the time she was pregnant. To date, her eyes are still perfectly normal, and really she hasn't seen any sign of any of the scary complications associated with uncontrolled diabetes. One thing to remember when looking at historical diabetes data is that digital meters have only been available since the early 90s. Pumps only became common in the mid to late 90s.The 4 shot a day routine only came into vogue in the early 90s. Diabetics back in the 70s and 80s simply could not maintain the kind of control that is possible today. That might make a huge difference in the long term complications. Personally, I believe it will.

In the end though, I bet none of this worrying today is going to matter a whole lot. If the biological drive to reproduce kicks in for you, I suspect you'll find yourself worrying about how to make it happen and not worrying so much about what will happen. Biology is funny that way.
posted by COD at 12:53 PM on January 30

This is not an easy decision. I have type 1, and I'm a father of two young children (under 3 ), who are so far disease-free.

In my opinion, running through numbers and chances over and over again (as I know I did) will only get you so far. I mean, I don't know if the human brain - or my brain anyway - can rationally understand the difference between relatively small fractions enough to make a decision on that basis, even though the difference can sound like a lot if expressed a certain way (like a hundred-fold increase). In any event, definitely talk more to your doctor (or a statistician!) about ways to put the numbers into a more meaningful context. (Which it sounds like you're trying to do.)

Anyway, maybe think about it this way. What do you know for sure about the baby you might have? You already know that your baby will be born into a loving family with at least one college-educated parent (maybe two - I don't want to assume). Those facts alone will give him/her advantages that countless other babies in this world - and even in the United States - do not have. Sure, your baby may be at a higher risk for developing a disease, but the disease while sometimes a giant goddamn pain is, generally, relatively manageable. Meanwhile, in the giant calculus of "is it justifiable to bring this life into being?" the child is waaaay ahead by virtue of all the other advantages that you give them.

That's one thought. By the way, having one parent with type 1 is, I believe, enough to raise your child's background risk. There is some ability to determine if this has happened with genetic testing after birth. My son, for example, lacks some genes that correlate with a lower risk of type-1, unfortunately, so I believe his overall risk is more like 9%. Not a day goes by that I don't think about that. Like I said, it's not an easy decision. MeMail me if you have other questions.
posted by chinston at 1:15 PM on January 30

My understanding of the genetics of Type 1 is that there need to be inherent risk factors present in both parents.

That's untrue. There are multiple genetic factors that increase risk, and they can come from either parent, whether or not the parents themselves are even diabetic. My nearest diabetic relative is a great-grandfather, and that's still considered a key contributor to my own diabetes. That said, the difference is, as others have suggested, still pretty small. The likelihood of a child being diabetic increases only about 10% with one diabetic parent (source).

Still, being diabetic, that 10% feels pretty big to me. I've personally decided not to have any biological children largely because of this. I'm interested in adoption for other reasons as well, so this was just one factor, but it's a big factor, knowing I'd be increasing the likelihood of not only my children becoming diabetic, but also my grandchildren, great grandchildren, and so on.
posted by scottreynen at 1:37 PM on January 30

Everyone has something they worry about passing on to their children. I have asthma and really bad allergies; chances are very likely that this will also happen to my daughter. And yes, you can die from asthma. This is one of those questions with which you truly have to be comfortable with the answer before you start trying to conceive. To me, it's sort of like the "can we afford a child" question, or "is this the right time" or "how can we bring a child into the world today." These are big looming questions, and if you try to be too controlling about the answer, you are not going to be happy with the results. For me, having a child was a given; I wasn't concerned with my medical problems as much as I was about is this the right time. Well, there's never a right time, because having a child changes your life in ways you could not even imagine. And your child might have problems that you never imagined that could eclipse the chance that he or she would have diabetes--problems like spina bifida, cerebral palsy, congenital heart defects, etc.

Regarding retinopathy. I am sure your endocrinologist has also mentioned that for every negative thing that happens during pregnancy, some really weird positive things happen, too (multiple diseases, like MS and asthma, go into remission for some women; BP goes down for a lot of women, etc.). There are risks to even a "regular" unafflicted mother. When I was pregnant, I had to take, daily, an FDA category C drug. They don't know if it would affect the fetus. And since I developed pre-eclampsia and had to deliver at 32 weeks, who knows if it did. All we can do is rely on the advice of doctors and other patients who have clinical evidence. If you are not comfortable with the potential outcomes, either don't do it, or be prepared to deal with it.

Worrying--or being concerned with--every single possibility is not an effective way to deal with life. Life is a series of mitigated risks. You can mitigate your risks by seeking out the advice of qualified professionals, and continuting to take excellent care of yourself. But whatever decision you make needs to be yours and what you feel is right. Good luck!
posted by FergieBelle at 1:52 PM on January 30 [1 favorite]

@scottreynen

My source.


Perhaps it is safe to say the risk exists, but is small for passing type 1 to your offspring- how small is difficult to predict and varies with the genetic make-up of your partner, as yet incompletely identified environmental factors, and the complexities of the immune system.
posted by hellboundforcheddar at 2:05 PM on January 30

You may find this helpful.
posted by hellboundforcheddar at 2:14 PM on January 30

I'm almost certainly not the person you expect to answer this. I'm a gay man whose partner has had Type 1 diabetes since he was 12, in 1970. My own grandmother and an uncle were also Type 1 diabetics. I suppose I have some insight, albeit a step removed.

The first thing I want to say is, suppose you have a child and "the worst happens:" He or she develops Type 1 diabetes. The bad news is that they will have a lifelong challenge and struggle. The good news is that it's so much better than it was fifty, thirty, or even ten years ago, and I believe that advances in medicine and technology will make things better in the future. You have no guarantees that your child will not be diabetic. You have no guarantees, for that matter, that he or she will not have some other serious health condition, or a birth defect, or anything else. If you choose to have a child and he or she is diabetic, this child's life will be better than yours, and he or she will also benefit from your experience and insight.

I will say that I think it is a good thing that my grandmother chose to bear my mother and my two uncles, and it is a good thing that my uncle father his children. Their lives were not easy, but the world is better for them being in it.

On your second question, regarding your own health risk, only you can decide how much risk you are willing to tolerate. My partner has been blind. Fortunately, he did recover his vision. I wouldn't want anyone to go through that.

You express uncertainly as to whether you want children, and whether you want biological children or adopted children. Honestly? I think these issues need to be settled first, before you get into the risk questions.
posted by Robert Angelo at 2:21 PM on January 30 [1 favorite]

Here's something you might want to take a look at. Figuring out your genotype isn't that hard (or expensive) any more, and there are people out there with "genetic counselor" on their business cards.

It could at least give you a better idea of the odds of passing the condition on.
posted by Kid Charlemagne at 6:52 PM on January 30

Disclaimer: childfree, not diabetic yet, Type 2 runs absolutely rampant in the two generations before mine (every single blood relative has it) and it's a bloody miracle my cousins and I haven't gotten it yet. Yes, this is one of the factors for me in the decision not to, especially given pregnancy complications.

Whether or not the kids get it- who knows. Whether or not you'll have shitloads of complications or not- who knows. The real question to me is, do you want kids SO BADLY that you are willing to risk your life/permanently damage your health in order to have them? That's really what you need to ask yourself.

It sounds to me that if you are not rabidly on fire with the desire to birth them (because you might have to go through hell and high water to do it!), then...don't. It's perfectly fine to adopt kids instead.
posted by jenfullmoon at 7:44 PM on January 30