Tough Question: What To Say Or Not To Say???

[ajw4790]

Hi everyone!

I have a tough question that I was wondering what other people thought of how to best deal with it? I am 25 y/o (female), and have a younger sister (22 y/o) that is engaged and to be married in September. She recently has been hanging around a lot of other young couples that are all having or have children. I can tell she enjoys spending time with the youngsters and probably wants to have children of her own. Due to the fact that dysautonomia etc. seems to be greatly genetic in our family, I have been wondering what to say or not say to her about a variety of topics in this area (risk for her, fetus, high risk pregnancy planning etc).

First and probably one of the most important/hardest things about this, is that my sister and I do not have a very good relationship. We used to, but she got very distant, crabby, etc in her late teens and didn't want to have anything to do with me. She hid this boyfriend (first we ever knew about) for a while, then couple weeks later she went to help him move into college etc. They ended up not in the city they were supposed to be, in a hotel together, and saying that they found an apartment together. AND this was just the beginning... And, yes they are still together 3-4 years later and getting married. So, all around things have gotten better than they first were, but have a LONG way to go. My parents are worried about ticking her off, and her not communicating etc. with us. So, it is like walking on egg shells... (So, I have to be super careful about what I say. My parents think I should just say nothing at all.)

So, more background... Many know my situation or can read my sig line, so I will not regurgitate it here. But, for me my issues have pretty much been life long and had epilepsy at age 2. Both my parents have similiar issues to me, but just not as serious or restricting. My dads parents also both had seizures and similiar issues and along with multiple other issues were disabled from a very early age. So, for us there is no denying that there is a genetic component to all of this.

As for my sister she already has had one seizure (cause unknown- quite possibly autonomic- took her a while (hours) and meds to come out of it). She also has had issues with Inappropriate Sinus Tachycardia since her early teens. Currently not under treatment for to my knowledge. She took Toprol for many years. She also had severe scoliosis that required surgical reconstruction/fixation a year ago. During the first attempt at surgery she had an ANS reaction and her heart overreacted and delayed the surgery. Of course my family ignored all my attempts prior to the surgery to make sure that the drs. were well aware of family and personal history in regards to these issues. But, then barely saw some merit in my worries after this occured.

My sister knows bare minimum about me and my medical issues, due to lack of communication and that she does not want to hear any of it, and pretty much ignores/changes the subject when it comes up. So, in turn I do not think that she is well educated about herself and what she may or may not have going on. Plus, she just doesn't believe most of it.

So, I guess my question is what do you think should or should not be said to someone that maybe interested in having a child??? I am concerned about the risk to her and the fetus. I am one that feels information is power, and when put to good use can help a situation out extraordinarily. So, not that she should not try at some point to have a child, but that all precautions are taken to limit any risks. They both (and my parents) seem to be from the ignorance is bliss mindset, and feel that she knows I have medical issues. I guess they feel that it would come up in family history with a dr. and that the dr. would know all, and be able to extrapolate any risks from that.

Even without the family history and ANS issues, the scoliosis post-surgery is enough to concern me. At this point she does not know if she has dysautonomia, connective tissue disorder, etc....

What do ya'll think???? (Especially since I have never wanted children of my own, so I figure my point of view is a little skewed.)

Thanks for ya'lls help and reading this!!!

[Guest brianala]

As someone else who has never wanted children, I would advise you (politely) to stay out of her business. I'm sure that if and when the time comes she is ready to have a family, she will weigh any potential risks against her own set of priorities (or not). If she asks about your condition, feel free to tell her everything but I wouldn't assume she wants or cares to know.

Jumping in to offer advice about something like this is sure to backfire, especially since by your own admission she doesn't seem to care about your condition or have a very good relationship with you.

[janiedelite]

I have to agree with Brianala. I know you are concerned with just cause about the risk genetics might play for their children. I know she is young, and it sounds like even if you did express your opinion it just might further distance you two. It's a tough spot to be in, but in my experience people in these situations will do what they want.

[bjt22]

It's an individual decision. I'm assuming your sister is of normal intelligence and will seek out appropriate pre-natal care should she become pregnant.

I worry about my children. My daughter, who has been diagnosed with a mild case of NCS, donated a kidney. Yeah. I gave her my best advice, and she shared this with her medical team. Fortunately it turned out all right for her, but there you go. We have to allow adults the room to make their own decisions. I'm sure that if your sister had certain symptoms arise that she would come to you for medical advice. Let her know that if she ever questions such symptoms in herself that you'd be glad to help. Don't link such discussions to the possibility of pregnancy, however. That's too much of a hot button issue.

[firewatcher]

When I am in a spot like this (where I have something I need to say, but emotion or awkwardness gets in the way) I write a letter that I never intend to send. It allows me to express myself, re-read it, edit it, distill it, edit out any accusatory or questionable feelings. I sit on these letters for a long time, sometimes a very long time. Occasionally I send it (like I did to my previous friend/primary physician) but more often I don't. Many times I have been fortunate that the person that I would have sent it to, comes back, sometimes years later and we talk. I regained my best friend this way. She never got my letter, but over the years we have addressed every issue it contained. Putting it in writing makes it concrete and "said" in some way in your mind. If your sister eventually does get pregnant and has issues, perhaps you could send it. My brother and I have almost no relationship, "strained" would give it more validity than it has. When I got divorced, he wrote me such a letter, it was the kindest words I have ever heard from him, then or since. Think about WHAT you would say, put it down and THINK long and hard. She may come back to your family someday and be thankful for your foresight...JUST DON'T SEND IT!!!!!!!!

[tinkerbella]

It's nice that you really care about your sister. I have concerns about many members of my own family. My doc said leave them alone, they will in their own time have to make their own decisions about what to do. I hope as a parent, and sister that I'm role modeling the best I'm able as many are displaying symptoms and brush them off as nothing. they are in denial and in our family the heart enlarges, they all knnow and they are only fooling themselves. All we can do is pray for them.

Sadly, I know 2 of my sisters would rather drop dead one day than live the life I live. Another brother has so many of my symptoms, it's like talking to a stone wall. So it's my kids and grand babies I worry the most about as my doc told me to tell them to tell their doctors. None have been told. It's hard when your the grandmother, grandson was born with brachycardia and has been speech delayed. He just started talking but it fragmented speech. I kept saying did you tell the doctor about me or early intervention that his grandmother has a neuro problem as that would have got him in the door. Denial is really difficult.

I agree you can't say anything as the sister, as I mom I've always had a open line of communication till the dx.

She has promised me she will go to the doctor asher heart is beating way too fast and she will tell the doctor about the kids at my granddaughter's August check. I must be patient and wait and trust that she will folow through.

My son once said to me, "Mom they are not your babies." If you send a letter to the doctor and she finds out, she will never speck to you again!"

It's hard to let go when you love people and you see they woun't tell.

I feel your delemma, I feel your pain. No one wants anyone to be sick ever. My youngest child has an illness that can be passed on to his grandchildren and for that reason alone he won't have children. My heart hangs heavy for him and for me. It did the day he was dx'ed and two years later he was struck again with another disease. At times life does not seem fair! I admire his decision, but wish it was one he never, ever had to make.

I wish you and yours the best~

I pray for miracles for my son~

Hugs and love,

bellamia~

[ajw4790]

Hi,

Thanks for ya'lls input and help. I did want to clarify that although I do have concern over how genetics may affect a child she may have, that was not my overwhelming concern, and I realize that is for them as a couple to discuss and decide how to procede. I did not ever intend to "try" to tell her that she should or should not have a child.

I am more concerned about something going wrong during pregnancy that may cause a miscarriage/stillbirth or put her (the mother) in serious danger (issues with erratic bp, bleeding out etc). It is just as her sister I don't want anything to happen to her or for her to have to go through all of that. Especially if just being a little more watchful, and taking a few precautions during the pregnancy could greatly increase the probability of a healthy pregnancy and birth. So, it is hard to just say nothing. I don't want to be pushy, but I also guess I didn't see much problem with in bringing up in passing in a casual non-confrontational way, that if she ever wanted to review family history etc. prior to family planning that I would be available to discuss it with her. I just do not feel that she has all the knowledge to give to the drs., and that she sometimes likes to omit things if she feels they are not relevant when talking to them.

I would just feel more comfortable if I knew that she had all the family history facts and shared them appropriately with a competent doctor that is well versed in higher risk pregnacies, and that they do not just proceed as if it was just another "normal" twenty-two year olds pregnancy.

I guess I just keep having the nagging reoccurring thought of what if I do absolutely nothing, and something does happen? Something that possibly could have been prevented, but I just was to worried of not being liked and upsetting someone?

It is a difficult position, so that is why I wanted other peoples input, and appreciate everyones comments and assistance.

I guess I will probably end up doing nothing, but it has been on my mind a lot so I thought I would ask.

Thank you!!!

[bjt22]

If it comforts you at all, I have probably had autonomic dysfunction for my entire life...including during all of my pregnancies. I can look back now and see where there were irregularities...I think my gestational diabetes might have been related, as well as the constant anemia and erratic blood pressures that really didn't fit the pre-eclamptic pattern.

Should your sister, at some point in time, decide to have a baby, maybe just watching and letting her know that if anything comes up, well, you're there.

[tinkerbella]

thanks, i don't think they will ever take off their rose colored glasses with glitter on them.

lol! but i still love them!

[firewatcher]

Hi,

Thanks for ya'lls input and help. I did want to clarify that although I do have concern over how genetics may affect a child she may have, that was not my overwhelming concern, and I realize that is for them as a couple to discuss and decide how to procede. I did not ever intend to "try" to tell her that she should or should not have a child.

I am more concerned about something going wrong during pregnancy that may cause a miscarriage/stillbirth or put her (the mother) in serious danger (issues with erratic bp, bleeding out etc). It is just as her sister I don't want anything to happen to her or for her to have to go through all of that. Especially if just being a little more watchful, and taking a few precautions during the pregnancy could greatly increase the probability of a healthy pregnancy and birth. So, it is hard to just say nothing. I don't want to be pushy, but I also guess I didn't see much problem with in bringing up in passing in a casual non-confrontational way, that if she ever wanted to review family history etc. prior to family planning that I would be available to discuss it with her. I just do not feel that she has all the knowledge to give to the drs., and that she sometimes likes to omit things if she feels they are not relevant when talking to them.

I would just feel more comfortable if I knew that she had all the family history facts and shared them appropriately with a competent doctor that is well versed in higher risk pregnacies, and that they do not just proceed as if it was just another "normal" twenty-two year olds pregnancy.

I guess I just keep having the nagging reoccurring thought of what if I do absolutely nothing, and something does happen? Something that possibly could have been prevented, but I just was to worried of not being liked and upsetting someone?

It is a difficult position, so that is why I wanted other peoples input, and appreciate everyones comments and assistance.

I guess I will probably end up doing nothing, but it has been on my mind a lot so I thought I would ask.

Thank you!!!

As much as you might feel responsible, It is NOT YOUR responsibility! You cannot accept the responsibility for this, or take the guilt on yourself if anything happened. Many of us have had successful pregnancies with POTS. If she does not seek your help, just watch and support them in any way you can. Write that letter if you have to, it will "express" your knowledge and feelings, but do not send it...unless they ask your opinion. As hard as it is to watch, we all have to make our own way!