Oh what I wouldn't do for a crystal ball

April 10, 2011 12:28 AM

What do you do when doctors can't give you an answer? Like... whether or not you SHOULD try to have children?

Let's say you have Condition Foo and Condition Bar. Condition Foo, which is somewhat understood, is treated by one group of specialists. Condition Bar, which is incredibly rare - especially with Condition Foo, is treated by another group of specialists.

You ask this question: "Should we try to have a child?"

Team Foo: You're low-med risk. It's really hard to say. First, you'll need to switch to this medication that may cause birth defects. It may - but it also very likely won't. We have had some women with Foo turn out just fine. But whatever you decide, we'll support you!! [in very upbeat voice]

Team Bar: It's really hard to say. I don't have a crystal ball. You can do some things to mitigate the risk.

You scour the internet and you find nothing that really relates to your situation. How do you make a decision?

Make the wrong decision, and you could end up with 2 deaths, or 2 significantly ruined lives. Make the wrong decision, and you could end up not having children despite the fact that you could've.

(Please don't reply if you're going to say "just adopt". Also surrogacy is not an option due to Foo.)

posted by veryblue1 to health & fitness (30 answers total)

Well reading between the lines of what the 'Foo' specialist said, it seems like they're optimistic but they're never going to tell you 'Yes go for it' because they need to cover their arse in case the worst happens.

It will probably be hard for medical people to chip in on here as well.

If you were comfortable with it, maybe you could say more specifics and let people help to scour the internet for you. If you don't want to do it on here, maybe make posts on specific forums asking for help and see what people out there can help you with.
posted by Not Supplied at 12:35 AM on April 10, 2011

I mean help you to get more information to make your own decision.
posted by Not Supplied at 12:36 AM on April 10, 2011

The thing is, life is full of risks. Do your research, talk to your doctors, and make a decision that feels like the best one for you. That's all you can really ever do.
posted by mleigh at 12:44 AM on April 10, 2011 [1 favorite]

Oh man, honestly, I'm not sure a bunch of strangers on the internet, who don't even know about your condition are going to give you better advice than medical specialists who know and understand your problems.

Indeed, I'd go so far as to say you really shouldn't take anyone's advice in this thread (except mine, natch!), because we don't know - couldn't know - how to assess this any better than you or your doctors.

It doesn't sound like your doctors are saying no, outright, but I'm unsure what more or better info anyone here can supply you with.
posted by smoke at 12:50 AM on April 10, 2011 [5 favorites]

Is either of these a genetic disorder? I ask because it seems like the kind of situation a genetic counsellor is trained to handle. They also can't tell you what to do but they can often give deeper info about the diseases, and also have ideas about how to think through the problems and come to a decision you can live with.

Even if it's not a genetic thing there may be medical ethics/counselling type people who can help you. You could ask your specialists or look at any national organisation associated with either foo or bar for referrals, otherwise try asking a big hospital nearby (preferably one that does genetic testing) as they're likely to have someone they can refer you to.
posted by shelleycat at 12:51 AM on April 10, 2011 [5 favorites]

Well reading between the lines of what the 'Foo' specialist said, it seems like they're optimistic but they're never going to tell you 'Yes go for it' because they need to cover their arse in case the worst happens.

The flip side of that is they might not want to tell a woman who wants children that she cant unless its physically impossible. Its really not their place to decide whether its worth the risk, if there are no studies with actual figures, even as medical professionals, they really only have anecdata.

We have had some women with Foo turn out just fine.

Did they really say some women? If they did, I'd be somewhat concerned - to me that implies that most weren't "just fine". Those that weren't "just fine" could be anything from complications along the way but mother and baby survived unscathed eventually to mum suffered a worsening of her condition(s) and baby is disabled to both of them died.

As to the actual question What do you do when doctors can't give you an answer? you (and your partner) have to make the decision yourselves. As you say, they can't give you an answer - not wont. With the rarity of your combination of conditions they wont be able to give you actual facts of the statistical likelihood of death, disability or being fine.

Make the wrong decision, and you could end up with 2 deaths, or 2 significantly ruined lives. Make the wrong decision, and you could end up not having children despite the fact that you could've.

IMO, what you need to ask yourself is, for you, which of these scenarios is worse? For me I'd have to say, raising a severely disabled child and/or worsening of your own considerable medical problems is worse than death and they're both much worse than never having my own biological offspring (caveat - I don't plan on having children anyway). But no-one else can make that determination for you. Maybe for you, the desire to have your own biological offspring is so strong that it is worth risking death or disability for.
posted by missmagenta at 1:02 AM on April 10, 2011 [4 favorites]

Have you searched scholarly journals? Not just 'the internet', but academic databases of peer-reviewed journal articles? If you want to base your decision on evidence, that's what you need to look for - published studies that include maternal and child mortality figures for each of your conditions. If the studies don't exist, then any advice your doctors give you is based on anecdata - they honestly don't know for sure. If that's the case, you may need to accept that the risk just isn't quantifiable, which means you'll have to revert to ye olde non-evidence based gut instinct - whatever form that takes for you.

If you were willing to name your conditions, I'm sure the more scientifically minded Mefites would help you dig up whatever relevant data is out there.
posted by embrangled at 3:03 AM on April 10, 2011 [3 favorites]

I would seek a third opinion from a specialist in obstetric medicine. They are typically dual qualified internists / OBGYNs. Their workload is mainly managing pregnant women with complex pre-existing medical conditions. They will have more experience of treating both FOO and BAR, and maybe even FOO and BAR together, than either the FOO or the BAR specialists.
posted by roofus at 3:07 AM on April 10, 2011 [4 favorites]

...in pregnancy. (Obviously the FOOists and the BARists will have more experience of FOO and BAR, but a good obs med physician is likely to have seen more pregnancies in those conditions). In my experience obs med doctors are typically far more positive about you getting pregnant than your referring physicians will be.
posted by roofus at 3:09 AM on April 10, 2011

Will the doctors at least list off the ways you could be killed or disabled or financially crippled or committed to a lifetime of difficult caregiving and also list the different kinds of birth defects that have been associated with the drug? If there's no statistical data on the likelihood of those outcomes, then you're missing a huge factor in the equation, but the number of foreseeable ways these conditions could interact to create unacceptable outcomes is still interesting. It tells you your doctors can see at least X realistic paths by which things could go wrong, where as X increases you have to assume the probability of at least one of those things happening increases by some degree.

Meanwhile, if you gave up on having kids, do you think any resulting depression would be severe enough to yield suicidal thoughts? How much regret would you have if you did not have kids? Would you be affected positively by statistics showing people who do have children usually become less happy, at least for the first 18 years, even if they had looked forward to having children? Those are risks and mitigating factors the doctors cannot assess for you, but they're just as important to evaluate, because they're the ways the other choice could go right or wrong.

For me, the subjective severity of death, disablement, financial challenges, and many birth defects would always, always be far worse (assuming a non-zero possibility) than the subjective severity or likelihood of a bad outcome for not having kids, and the answer would be obvious. For you, that's apparently not the case, and your doctors not only lack the probabilities you want to know, they also can't assess how important this is to you, which explains some of what they're saying.
posted by Monsieur Caution at 4:12 AM on April 10, 2011

The process of decision-making involves gathering information, being aware, learning about and evaluating risks, and then making a decision considering the values and goals that you have.

The role of doctors is to supply the information all the way up to "and then". You want them to also make your decision, and they are just not going to do that.
posted by yclipse at 4:19 AM on April 10, 2011 [1 favorite]

Ask your medical teams if there is a [.pdf] maternal-fetal specialist in your area you could see before you become pregnant.

Likely better than either team for your disorders, an MFM with training in high-risk pregnancies may have a better idea of your risks for pregnancy. You should be able to find one to see before deciding to become pregnant who can look at your whole health and both of your conditions and may be able to give you more information about the risks of pregnancy with your conditions.
posted by zizzle at 4:41 AM on April 10, 2011 [6 favorites]

I'm agreeing with the above that depending on what Foo and Bar are, that an obstetrician and/or genetic counsellor would be good to talk to. Are there Foo and Bar national organisations that might be able to offer advice as well? I doubt you'll get a clear answer from anyone, but you may be able to get more information to help you.

The other thing to remember is that having a baby is one of the the most dangerous things a healthy young woman can do. The possibility of "2 deaths, or 2 significantly ruined lives" is there for every single pregnancy that is carried to term. This isn't meant to put you off having children, it's meant that you need to take your risks in context of the general risks in pregnancy. So if the odds are "9 in every 100,000 women with Boo will die in pregnancy", that sounds very scary, but less so if you put it into the context that the UK's maternal mortality rate is around 8 in every 100,000 anyway.
posted by Coobeastie at 5:06 AM on April 10, 2011 [2 favorites]

I think there's two separate questions going on here.

The first is whether pregnancy poses a significant risk to the mother's life. It sounds like you're getting equivocal information there, but even if the risk were ten times normal, you'd still only be looking at a 0.1% chance of maternal mortality, as the current rate is something like 11-18 per 100,000 live births. Knowing that getting pregnant has a high chance of killing the mother seems to me to be a good reason for trying to avoid getting pregnant. Still, consulting an obstetrician is probably a good idea.

The second is whether you are absolutely opposed to having children with birth defects. Because the risk of that is a lot higher, regardless of your medical condition. Congenital abnormalities are pretty rare, but they still run about 200-300 per 100,000 live births, and the majority of them are apparently classified as "sporadic," i.e. without known cause. So there is always a risk of some kind of birth defect, regardless of how healthy and careful the parents are. This stuff just happens. So unless you're completely unwilling to care for a special needs child, having a slightly higher risk of some kind of congenital abnormality does not seem to me to be a good reason for trying to avoid getting pregnant.

Ultimately though, I think the question should not be "Can we have a risk-free pregnancy?" but rather "Are we willing to deal with the risks of pregnancy?" Because there are always risks. Your condition may increase those risks, but what you're really trying to decide here is your particular tolerance for this kind of risk. If you really want children you need to be okay with a certain amount of risk anyway. Heck, having kids at all means taking the risk that they're going to get hit by a bus. Risk is just part of life.
posted by valkyryn at 5:31 AM on April 10, 2011 [4 favorites]

The most important thing to know before you decide to take this risk or not is where you stand in your relationship and the security of your relationship - is it strong? will you be there for each other no matter what? I cannot help but think based on your previous postings that your situation is already so fraught - from my POV it feels like you're focusing on absolutely the wrong thing right now with this question; you are putting the cart way before the horse.

Having kids is a risk under the very best circumstances because no one can say if or when something will go wrong randomly - and it happens all the time, with no way to predict it. As well, having a baby is an automatic stressor on a marriage, even, again, if your marriage is very strong, the child is absolutely wanted, and nothing at all goes wrong - because having kids changes your relationship and your marriage. It just does. You've already faced tragedy and loss trying to have children due to this medical situation with your wife. Your marriage is now very rocky and you're thinking maybe should you leave her because her medical situation stresses you out and the thought of not being able to have children with her stresses you out.

I personally think making this decision now before sorting out everything else is so foolish and risky, because you already know there is a good chance that trying to have a baby together may not result in a "normal" pregnancy with a healthy, full-term child. I think the decision you need to make FIRST is "are you going to stay in this marriage whether or not you have children?" And I would say "probably you should get counselling" in even any healthy relationship before you approach this question of whether you should try, but in your specific circumstances I can only see heartbreak and tears if you proceed without long, sober, and HONEST discussions first. You should get joint counselling, no question. She should know exactly where she stands with you before making this decision. And you need to think about WHY it is so important to you to attempt to have children even knowing and facing these risks, and how prepared you are for all the different possible outcomes.

I think given your wife's medical situation it would be so cruel to have her feel that she either have children or you will leave her, and perhaps risk her health and her life and the health of the baby and the baby's life to satisfy your desire for children. How can she make a decision like this facing that kind of pressure? What if she goes through all this partially or mostly for your sake, it doesn't work out and you leave her anyway? What if she has a baby but it has a severe birth defect? Dealing with disabilities in your children is a strain on even a good relationship. Aside from the medical complications, how can it be a good idea to attempt to bring children into a relationship already strained, for the purpose of preserving that relationship? That's not fair to her and it's not fair especially to those children.
posted by flex at 6:46 AM on April 10, 2011 [14 favorites]

It really depends on the conditions involved. Auto-immune disorders are notoriously unpredictable. Genetic anomalies can be ruled out in the first trimester with CVS.

Do you live in an area with accessible abortion? Would you be willing to support her through a first, second, or even third trimester abortion if she needs it or decides that it's too much? Even if you see that as losing your child?

Good luck to both of you--
posted by the young rope-rider at 7:01 AM on April 10, 2011

I have a pre-existing medical condition and consulted my primary care doctor/relevant specialist as much as possible before getting pregnant. Now, in my case, it was nothing particularly serious, but I did need to change my medication around and things like that.

Even though my condition isn't genetic, I also saw a genetic counselor in the first trimester and had a special Level II ultrasound at 20 weeks to check for any possible defects that could have been caused by my medication. If something had shown up at that point, best case scenario - I would have 20 weeks to prepare for a child with birth defects. Worst case scenario, I'd be able to terminate the pregnancy. Thankfully, the ultrasound showed a perfectly healthy fetus.

And I now have a perfectly healthy baby. Which isn't to say that it always works out, but that many women with pre-existing conditions can and do have healthy babies. I have a friend with conditions far more severe than my own who was coincidentally due on the same day as me - she was monitored extensively throughout pregnancy and her baby is also healthy in every way. Without knowing the conditions, it's very hard to give any kind of picture of what the specific risk factors are and how often they show up, but as your doctors have said - many women do it.

In the end, babies are a crapshoot for everyone. Perfectly healthy people have babies born with medical problems all the time. There are absolutely no guarantees when it comes to pregnancy. At some point, you just have to go ahead and do it. The only other option really when it comes to having kids is adoption, which has its own set of complications and isn't any easier.
posted by sonika at 7:03 AM on April 10, 2011

I would look for support groups (IRL or online) and speak with other individuals that have been/are in the same situation and find out what their opinions/experiences are.
posted by KogeLiz at 7:55 AM on April 10, 2011 [1 favorite]

Clarification: supports groups related to your same conditions.
posted by KogeLiz at 7:56 AM on April 10, 2011

you could end up not having children despite the fact that you could've.

Lots of people end up not having children despite the fact they could have. What impact this decision makes on you, your life, and your marriage is wholly up to you.

Many people have children—and then at points later, long for the life they had prior to having kids.

Many people don't have children—and then at points later, wonder "what if" and question whether they made the right choice.

There will be longings and regrets no matter which choice you make. But if you make a decision that ultimately looks like, "We didn't ask for Foo and Bar, but we have to deal with them now, and with the information we have, the best choice is a wife who is healthy and alive. Death is not an option." (i.e. healthy as possible given Foo and Bar, as compared to the complications of pregnancy)

—then you will always have a clear conscience that you made the choice that is safest and best for the two of you right now.

If you choose the riskier path, and elect to go through a dangerous pregnancy and possibly bear a child that is likely to have birth defects or health issues, you might have a healthy baby. You might have an unhealthy baby. Either way, you will gain the opportunity to love a human like you've never loved before. But see also: the dangerous pregnancy and the birth defects.

I think you both need to get the information from the doctors on what the best- and worst-case scenarios are, and the likely possibilities in between. Collect as much realistic practical info as you can.

Then, I think you should both take some amount of time (a week? a month? a year?) and really, really ponder how you would feel in any of those scenarios. What if your wife dies? Will it have been worth it then? What if your wife dies and the baby is sick, or needs lifelong care?

Are expenses an issue? What if your wife has to spend 3-4 months on bed rest due to Foo and Bar? Hospital bed rest is quite pricey, as is NICU time for premature babies or babies born ill.

But more importantly, I think you need to look back at the last two paragraphs of flex's comment. If your remark in the marriage thread is any indicator, then flex is dead on the nose and you need to determine what your level of commitment to the marriage is, before you discuss anything further about children.
posted by pineapple at 8:41 AM on April 10, 2011 [1 favorite]

Make the wrong decision, and you could end up with 2 deaths, or 2 significantly ruined lives.

I'd like to point out that the answer isn't a possibility at 2 significantly ruined lives, but 3. If your relationship isn't already rock solid, you are setting yourself up for failure. Taking care a child while also taking care of a partner is no easy feat, even in the best of times. flex makes some really insightful remarks, please take them to heart.

Adding another person to take care of into a marriage where you already bear a lot of resentment about your caretaker role can only lead to heartache for everyone- you, your wife, and your child.
posted by Zophi at 10:07 AM on April 10, 2011 [1 favorite]

I know we're not supposed to be digging up things from past threads here, but...This is not the time to have a baby. Do not have a baby unless you know that you are committed to staying and supporting your wife through her illness regardless of whether or not you ever have children.

In answer to your question of how do you know if the doctors can't tell you: The answer is that you should start by asking yourself if you should have a child (not only if it's safe, but if you should). The answer to that is currently no, since you do not have a stable marriage. Even if you wife were magically rendered healthy, she should not have a child with someone who would up and leave her if she got sick. Given that she is not health the way to decide is NOT that you ask yourself "will my husband leave me if I don't do this?" which is essentially the decision criterion you are forcing on your wife.
posted by If only I had a penguin... at 10:22 AM on April 10, 2011 [8 favorites]

Think honestly about what you would do if the worst case scenario happens.
posted by LobsterMitten at 10:29 AM on April 10, 2011

Just speculation, but I was confused by your statement that a surrogate would not work because of your wife's condition. This didn't make sense, until it occurred to me that the issue would be the harvesting of eggs. And so, how about -- once you get your relationship in a place where you are in a healthy place and committed to one another no matter what -- you use a surrogate with donor eggs?

You, or perhaps it is your parents, seem really determined that the child be genetically yours, which brings up this: Is there any guarantee that YOU are fertile?
posted by If only I had a penguin... at 11:03 AM on April 10, 2011 [1 favorite]

I'm going to be brutally honest here. Based on your posting history, you absolutely should not attempt to have a child. You would be doing it (and risking DEATH) in an attempt to "save your marriage", and that never, ever works out.

Please, just don't.
posted by ValkoSipuliSuola at 11:10 AM on April 10, 2011 [6 favorites]

In situations like this, I accept that I am making a choice in the absence of perfect information. Then I think about what my life would be like under each circumstance (Option 1 good outcome, Option 1 bad outcome, Option 2 good outcome, Option 2 bad outcome) as realistically and in as much detail as possible, and the likelihoods of each happening. Create long, realistic scenarios about what life would actually be like, because the consequences may extend for years. My knee-jerk tendency, without this approach, is to make quick, emotion-based decisions, so I have to remind myself that these details could become my life and try to really imagine what it would be like. The goal is to be very honest with yourself here and not blindfold yourself into doing something stupid nor fearmonger yourself out of doing something mildly painful.

Then decide which set of probabilities and outcomes you could more easily live with (Option A, good OR bad outcome vs. Outcome B good OR bad outcome). This way, even if the bad outcome comes to pass, you will know that you made the best decision you could. It doesn't mean you won't face years of suffering, but you will not compound it with being mad at yourself for the decision.
posted by salvia at 11:42 AM on April 10, 2011

In terms of the medical risks of seeking pregnancy, zizzle nailed it -- you want a high-risk maternal-fetal medicine specialist or perinatologist. If you have a big university medical school in your area, they might have a good MFM department whom you could call. These are people who are trained in the ways in which maternal conditions can affect and be affected by pregnancy.

In terms of the emotional fallout? I can't say what's true for you. But I had a difficult time achieving a live birth (6 pregnancies, two children) and I can say that for me, the emotional crucible of wanting children and not having them really was eased significantly by having my children. It was what I thought I wanted, and it WAS what I wanted. If the problems in your marriage are caused by or exacerbated by infertility, it is possible that having a kid will make a lot of things better, is what I'm saying. But that's a high-stakes risk, there are literally lives in the balance, so I would recommend counseling for each of you AND both of you together with someone who specializes in fertility issues. If you live in the Seattle area, memail me and I can give you a recommendation.
posted by KathrynT at 12:05 PM on April 10, 2011

This is really primarily your wife's decision. How does she feel about risking her life?
posted by yarly at 4:39 PM on April 10, 2011

[Few comments removed - People seem to be referring to stuff from other threads that may not be there -- please MeMail the OP if you have concerns that are not the things that they are asking about in this thread. Thanks.]
posted by jessamyn at 6:48 PM on April 10, 2011

I'm not going to say "just adopt", but have you really discussed that as an option? Pregnancy is never a guarantee of a healthy baby, even if both parents are healthy.

I guess what I'm saying is, even if your wife didn't have these medical conditions, plenty of people find out after marriage that one of them is infertile. There are so many things that make us have to rearrange our life plan. Even without these medical issues, there was never a guarantee that you would have healthy, biological children. So ask yourself: in the worst case scenario, where you absolutely could not have biological children, would you rather remain childless or alter your ideal vision of having a biological family? What about your wife? Maybe it would take pressure off both of you to at least be able to say "if we can't do this, that doesn't mean we can never have children, period."

If I had to make this decision, it would be sad but easy: my spouse's current health comes before a hypothetical future child. Pregnancy is already a difficult thing for a body; if there were risk factors significantly above a normal pregnancy, I could not ask my spouse to do that. But only the two of you (and really, in the end, her body) knows what are acceptable risk factors for you.
posted by nakedmolerats at 10:09 AM on April 11, 2011