Indelicate question/subject...

So, we just have the 1 child, Miss E.

We are contemplating another. Leaning towards no more, even before E got diabetes.

Now we know, that we have a huge chance of any others having T1D as well - we have the HLA type, the polyendocrine syndrome, and loads of other autoimmune diseases between the two of us. Our doc says its nearly a sure thing...

So, I'm trying not to let that influence my decision, but, I kind of feel like it is! Another little one with diabetes, two young children with diabetes. The cost, the stress, the way it complicates child care and so so much more. Kind of makes me hyperventilate just thinking of it.

So, I'm not really sure I have a question, but more looking for experiences with this...

Did any of you have more kids after having one diagnosed? Did you decide not to have more kids because of the first ones diagnosis? Did it influence your decision at all?

Thanks... and please don't judge me for thinking all this! I obviously know that our T1D kids are awesome, and wouldn't change having my daughter for the world. So I feel kind of guilty even having these thoughts about not wanting another T1D kid... But i feel like it is a factor...

 

My dd was dx at 13 months and that held us back from having another closer together, but by the time our 1st dd was nearing 2.5yrs old we thought we could handle another kiddo even if they ended up with diabetes. I will not sugar coat it, it was on my mind and a huge factor of deciding when e were ready for another. So when my oldest with D was 3.5 yrs old we welcomed our second. At 2 yrs old we had our second dd start trial net and by 2.5 she showed auto-antibodies. And while I had originally envisioned having 3 kiddos, we were happy with the 3.5 year difference and two girls, the choice to not have a third was not based really on the thought that we might have multiple kiddos with diabetes but more so that our family felt complete as it was.

But I will say that I think I will be having a more permanent solution to prevent pregnancy this year, because I do now have 2 kids with type one and I we are happy with our family size and would probably go crazy with a newborn and checking my d kids at night!

My girls are absolutely wonderful little girls and can not imagine not bringing my Madison into the world, our family was not complete yet.

 

Our D kid is an only. She's a solo kid for many reason, diabetes is the least of them.

I'm not sure who the Dr was how told you that an auto-immune disease was a given in the next child... but I'm skeptical. Maybe an appointment with a specialist? Maybe a geneticist, would be the thing to do.

I wouldn't let a family history of auto-immune disease be the decider.

I'm very happy with my one child, but if you want a bigger family then you really must be sure that you are making this decision based on the very best, most informed medical advice and perhaps, your willingness to look beyond that advice and do what's right for you and your family.

 

I found this article this morning for another board: http://www.joslin.org/info/genetics_and_diabetes.html

A question often asked here is "would you have done it/let them do it if Diabetes wasn't involved? "

 

Thats the hard part - trying to sort out whether or not we actually want another child, and trying not to let diabetes be a factor in that decision, but its really hard to separate!

We discussed seeing a geneticist... that might be a good option I agree.

 

I am a meteorologist by training. A piece of advice that I received in school was "Try not to make a forecast in the middle of a storm." The storm affects your perception.

Well....you are only seven months into T1D. If your world is anything like mine, you are still in the middle of a storm. I would shelve the questions you are asking for about 5 months. Everyone on this board says the first year is the worst. Things will be clearer in five months I am guessing.

 

I was about to post almost the same comments, not so metaphysical of course.

You are new to this DX still, she is still very younge. Take awhile, do your research, think about how your family as it is, and what you "envisioned".

Ps have you thought about CGMing? It was life changing for us, we are in such a different place now than before we tried it out.

 

Firstly, I think your doctor is a moron for making the statement that it is a "sure thing" that any future children you have will get diabetes. Secondly, if you are that unsure about having another child then you probably shouldn't. To me, your comments come off a little selfish. You mention the cost and the stress and child care issues.

Most people have things in their family hx that they would rather not have. Even without a family hx, there is no guarantee your child will be perfectly healthy. I personally don't think the decision to bring a life into this world should be based on the chance of them having a medical condition. I am not judging, just giving my opinion. This is a very personal decision and there is no right or wrong choice.

 

My son was diagnosed 3 years ago and we're expecting a very much wished-for baby in August. So, no, it has not prevented us from having more children.

Having children always comes with risks, whether your current children have medical issues or not.

 

I don't think that what her Dr said was specific to T1D, but rather a heightened genetic risk with two parents and a child with autoimmune issues.

I don't know deciding to have children should have a bit of selfishness. There should be great thought in bringing a child into this world if you do not have religious beliefs that counter that.

How can you fault any person that would consider whether they could afford to give their child what they believe is the best childhood, by calling it selfish?

I personally know that I went thru so many phases of assuming that I would have children, then to preventing children, then to no I am not ready, to yes please!-am I prego yet, to wait.................

I am learning how to be a mom and imaging how our next child may look like?

Then the DX, and now My perfect little bundle of joy has opened my eyes. I am no longer naive to what my family history shows or doesn't t show. But it does not change the knowledge that I am left with.

It is a consideration. It is a factor. And yes, it sucks, but..... It is worth it.

 

Only you can decide what's right for your family. For us, we knew we were done after DD was born. We went with a permanent birth control option and have never regretted it, In fact, several of our friends (who are all in their early/mid 40s, like us) are currently pregnant with unexpected pregnancies and each time we heard about one, we breathed sighs of relief that it wasn't us. We *know* we are done. I've always thought that if someone was really and truly done, they would feel like us - confident in the choice, no regrets, no debates. And that people that weren't 100% completely sure, probably weren't actually done.

I do have two kids with diabetes but not because of a subsequent birth - our oldest was diagnosed 6 years after our youngest. It is hard. Much harder than I expected, actually. BUT...it's become the new normal. Just like the first diagnosis was hard but it became our new life, the second diagnosis did the same. There are rough patches and there are long nights but I see how much it helps them to have someone that understands just what it's like to be diabetic (we have no family history so there are no other people in the family that get it) and to help them when they are struggling. Do parents dream of a day when one child will hear a CGM alarm and take a glucose tab to a sibling? Or have to explain an ambulance and a seizing sister to a kid with the same disease? Nope. But their response to one another has been amazing. They commiserate about lows at school and argue over which glucose tabs taste the best. They weigh milk for one another and help each other count carbs because they have both memorized so many foods that they can jump in with a count before I can even check a label. As they grow up, the challenges change (from not feeling lows in the begining to dealing with puberty now, for example) but we adjust and life goes on. It's never easy to have a CWD, and it's not easy to have two...but it really and truly becomes normal and natural. My husband and I were talking recently about how hard it is going to be to let go when they leave home and how we will feel lost when we stop being the primary pancreas after 15-20 years of having it in our house. It's so normal that life WITHOUT it seems weird...and we're only halfway there!

It's only been a year and a half since DS was diagnosed but it really feels like a lifetime ago. It's like it's always been this way and I have to remind myself that it's as new as it is! If you do have a second child and that child develops T1D at some point, you will adapt. You may struggle. You may grieve. But you will get through it. You've done it once and you would do it again. Parents are pretty good about stepping up and doing what needs done

 

I hope you and your husband are able to make a decision with clarity.

My first children were twins. At 22 weeks, an ultrasound showed that baby A had sirenomelia (mermaid syndrome) which is a whole mess of problems including several non-functioning organs, legs fused together (hence the name mermaid syndrome). Geneticists said moms w/ diabetes are more likely to have a baby with this condition. My husband and were both tested, no signs of diabetes (but I do have Hashimoto's). We were part of a fetal abnormalities study. Baby A died in utero at 32 weeks and an infection spread to Baby B by 34 weeks.
After a long healing process, we had my now non-D 11 year old son.
My D son was DX'd at 5. Along with the shock of his DX, a flood memories came back. I never regretted have DS for a moment. We knew we only wanted two children, so the decision to have another didn't come up.

I hope you can weigh your risks and come up with a decision that works for your family {hugs**.

 

I never "faulted" the OP. My point was, it appeared that their main concern was the hassle of having a child with a medical condition when deciding to have a child. If we all waited until we had enough money, time, resources etc to have a child, we would never have children.

The way I read it was since our child MIGHT have diabetes (or some other disease) and it is going to cost more, and be more of a hassle, then let's not have a child. To me that is kind of a selfish reason to not have a child. A child with diabetes can't have "the best" childhood? I disagree.

 

I think this sums it up perfectly.

Some things you need to think about:
First, take diabetes completely out of the mix. Think to yourself, do you want to have another child? Are you ready for another child?

You are very new to this, so I can see where it is scary to have another child. At the time my daughter was diagnosed we were planning on having another child. But then we decided to step back for a while and get a handle on our new normal. Then when things calmed down and we were ready to start thinking about it again we realized we were completely happy as we were. Granted, we had twins, so we had two kids already, but even if it was one, we knew we were content with our situation.

You can do genetic testing to see where you stand, but in the end, you need to decide what is best for you. Can you handle another child with a medical condition (that is incredibly manageable), or would it just be too much? In the end though it all boils down to "everybody's got something."

 

Just have to put this out there: if I were the OP, I would find your response unnecessarily harsh. A lot of parents of newly dx'd kids come to this Forum. Speaking as one myself, we are feeling pretty damned alone and vulnerable, and are reaching out for support in addition to advice. While I can appreciate your "telling it straight" and "shooting from the hip" style, it would be so much easier for newbies to hear what you have to say if you tempered your good advice with a little more kindness. OK, you may direct some harsh comments at me now, if you so desire.

 

This is exactly what I was going to say. If you exclude D from your thought process, do you want another child, or maybe you aren't ready for other reasons? I don't know how the doctor can say its a sure thing, how could he possibly know that? I mean maybe the odds are increased, but I don't think you should make your decision based on him saying that.

I was 7 months pregnant with my son when my daughter was diagnosed 2 years ago. Those first months were incredibly stressful for sure. But in a way I am kind of glad it happened that way because we knew we wanted 2 kids anyway and I wouldn't have wanted to wait any longer.

Good luck! I know there is a ton of stuff to think about but in the end it just comes down to how you feel emotionally about wanting another child. The other worries will work themselves out, or you will find a way to make it work!

 

I struggled with this for awhile. My dd was dxd at 1.5. I wrestled with the idea of having another knowing that the risk is big but in all reality, every single decision has a risk and a reward. I had to get to the point where I knew I would be comfortable IF I had another child with some sort of endocrine issues.. They run rampid in my family too.

My son is now almost 9 months now. I'd be lying if I said there wasn't worry in the back of my head but it does not overpower anything. I'm as prepared as I can be if he's dxd as well. It would suck, but it's not the end of the world.

Will I continue to have more? No. Well, I freakin hope not lol. My time is completely taken up by the 2 I have. If my daughter didn't need so much of my time, maybe it'd be easier and maybe I'd want more but that's not the case. I'd never take back the life I have. I think everything happens for a reason.

FYI, I do not think anything you posted was "selfish" It's a huge decision with many factors.

 

Don't feel guilty! You may not feel wise right about now but I think your post shows lots of wisdom. I read a book recently, "Stumbling On Happiness" by Daniel Gilbert. It sounds like a self-help book of sorts but it's not. The upshot, which is demonstrated in the book with lots of neat empirical studies, is that humans are very bad at deciding what will make them happy. We have all sorts of innate biases that lead us to misconceive our futures, leading us to be very poor forecasters of what will and will not make us content. The conclusion? (spoiler alert) Since we are so bogged down with all of our built-in predispositions, the best way to gauge your future happiness is to talk to others who have "been there done that". You are trying to imagine the future. There are lots of people out there and on this board who have already lived it or are living it (not exactly but you know what I mean). Which is what you are doing by soliciting views on this board. So kudos!

Not to trivialize your decision, but I recently had similar experience on a MUCH smaller scale. My two boys wanted a dog. "We don't want anything for Christmas and our birthdays, just get us a dog". We are already sleep deprived and are struggling to keep up with two active boys and T1D nights. And friends warned us, don't get a dog unless YOU, not your kids, REALLY want a dog. Well we got a 4 month old puppy and she's great. But holy hell is she a lot of work. I saw the train coming a mile a way and I still couldn't get off the tracks. While we all like the dog, I truly wish I had paid more attention to my friends.

And there's nothing wrong with being selfish. We all have degrees of selfishness. But it's that selfishness that enables us to have moments of solitude, enables us to occasionally do what we want to do, and enables us to not take on more than we can handle. I wish I had been more selfish when deciding whether to take a puppy into our home! Anyway ...

Good luck with whatever you decide!

 

Thanks for your comments. I am not sure what I said was unkind. I gave my opinion on the OP's situation. There are many different types of people on this forum, the huggy-hug kind and the not so huggy-hug kind. I guess I fall into the latter category. I think I have provided a lot of information and support to many new members over the 7 years I have been coming here. I also speak my mind pretty bluntly at times. That is just the way I am. Online, just like in “real life” there are many kinds of people with many different ways of expressing themselves. So you take what resonates with you and you discard what doesn’t.

 

We did have a family hx of T1D in my husband and his sister. We did consider the risk of having children with diabetes before we married. We were told our children would have an 8% chance of diabetes. Now we have 1 with T1D and another with positive antibodies and abnormal OGTTs and an identical twin with a 50/50 chance of diabetes. All 3 with or at high risk of diabetes. Not the genetic lottery we were hoping for.
To answer your question, yes it did influence our discussion about having children and how many to have. I would have liked more children but dh worried that having more kids meant more chance one would have diabetes. When our ds was dxd last fall it nearly destroyed his father and our family. I do think that it is reasonable and normal to consider diabetes when you know your family history. You need to consider how both you and your spouse would deal with it as well as the impact on the family and your future child. I don't blame you a bit, and I don't think that there is a simple answer. You will have to trust yourself, your spouse and your higher power if you have one to guide your decision.