Risk Factors Associated with Genetics / Mitochondrial?

[brain]

I am going to be a Grandma; as my son and
his wife will be having "my" 1st grandchild
(*grins*) this late Fall.

The problematic issue is this now at this stand-
point; at first they informed the Mama-to-be that
there were nothing to worry about - "all will be fine".

Until they did further background checking more
in depth. I have mitochondrial / genetic flaw; they
saw that on the computer database, when my son
went to have his lab work-up done - bad news,
he has the same and is a carrier. The poor Mama-
to-be now has to take this, more of that, and
my gosh ~ she is so overwhelmed that she is
taking it all negatively!

To note this: She was married before and has
children, but this pregnancy and her 2nd marriage
to my son - is going to be her last pregnancy. So
she knows how to deal with pregnancy. Her two
boys are brilliant and handsome.

My DIL was taking all of this in the most positive
manner one can dream of until that news came
along - and no matter how hard my son and I
try to push her out of the negative realm into
the positive realm ~ we fear that she's putting
too much stress upon herself and much more
by dwelling so much on something that may not
even happen (for such can happen, skip a generation).

However, the most insinuating phone calls were
made this week, where it really put her down;
they do not believe it's going to "skip" any
generation - it's going to be on the baby and
she's going to have to be closely monitored and
will have to go to the Hospital where I was born
at - where the baby, if he/she sustains seizures,
can be treated right away or any neurological
issues - can be treated right away. All of these
things are just way too much for her to bear!



HELP! Any advisories? We've exhausted all - but
her mind is so set on this, no matter which way
you paint that canvas.

*sigh*

[skillefer]

Well, as a soon to be mom...I guess it's good to be prepared for the possibility...but I have to remember what my doc said....I'd do the baby more harm by stressing then anything else...so go home and enjoy my pregnancy. My hubby and I are of the opinion that you take what God gives.You might be surprised. After all, medicine is an art, not a science. Doctor's make mistakes too...and doctor's don't know everything. My classroom aide differs..she says that there are just certain conditions that she knows she is not strong enough to deal with, and that if her child had any of those conditions, she would have aborted it. Luckily, her child came out healthy...a little scatterbrained, but healthy.

Your future DIL has a tough road ahead of her. Perhaps the toughest part being not knowing whether the genetic issues will mean that her child is just a carrier, or if the child will end up actually having the genetic flaw. Just be there for her and listen. She's way too stressed, and she needs to just stop thinking about what might be, and think about the joy she's had, and the possible joys ahead. Spend time with her without pushing, because I'll bet that she'll want to ask you what your life has been like. Would you change it at all? Would you have preferred not to have been born?etc.... After all, your her most knowledgeable resource. I had a friend that always said that we get our health from our moms. Maybe that'll be the case here. If so, her child may not manifest any symptoms. Her child will be perfect, whether it ends up showing signs of the defect or not. I've never met a parent of a child with birth defects that said they wished their child had never been born. They love the child no matter what....

[Meetz1064]

being prepared does make one stress out too much. I understand that. I do wish I had known--I just found out a couple of days ago because my aunt admitted it--that MY E is genetic.

I do remember stressing out with all 3 of my full-term pregnancies, thinking, "Wow, I don't know where my E comes from, I hope they don't get it". Now, I have to tell them that they are all probably carriers.

Why not have her try to do simple things like yoga, or puzzles? Something that will take her mind off the situation? Since you're down in Florida, perhaps you have some outside work that she can do, LIGHT gardening, or something along that line...

What about some volunteer work? That's another idea.......

Sorry I can't be more help,

Meetz

[katie's mom]

So sorry you and DIL, son, etc. are going through this! Pregnancy is stressful enough without the e monster hanging over your head!

My only advice would be to reassure her that by detecting the risk early she is already doing the best that she can possibly do to ensure prevention/early intervention. These two things are the baby's best hope right now, so she is being a good mama by gaining this information, however distressing.

I know that many of the parents on this site and others wish that they had known about their child's condition sooner - mine hit us like lightning before her 4th birthday after we were living the "perfectly normal" life. Epilepsy does skip generations and there really is no way of knowing for sure how/when it will rear its head. But knowledge is power so don't let it discourage/scare her.

The anxiety, shock and disappointment she is feeling right now is perfectly understandable. But remind her that the baby has to come first. Being strong for your children is sometimes the hardest thing that we have to do, but as parents we ultimately don't have a choice.

What has helped me more than anything is joining forums like this one with other people who understand what you are going through and will let you know that you are not alone in your struggles. It can be hard dealing with a world that cannot sympathize and may even seem callous towards you just because of what they don't know and haven't been through.

Please encourage her to explore the possibility of visiting one of these sites so she can find a place to vent. It also helps me to keep from exhausting my over-taxed family members who are also having to deal with this in their own way.

You are in my prayers!

Kristi

[LuvMyTwins]

As a former twin preggo (no offense skille) I understand all of the issues associated with genetic probs. Yet, you have got to stay upbeat and positive for the baby. My twins, thanks to the fact that I have epilepsy, came 3.5 months early. I heard everything from brain damage, severely disabled, we'll never get them off life support, etc. My husband and I remained positive. Now, we knew the reality of the situation, but we didn't talk about it. Individually, we informed ourselves, said thanks to the doctors and chose to deal differently.
My twins are healthy, active and loud! We had our ups and downs, but all came out as it should. We made the decision to take what was given to us and we were greatly rewarded.
My thoughts are with you during the periods of insecurity...they WILL make everyone stronger----including your DIL.---Mere

[NAS]

Interesting enough I had the reverse!

My Daughter Isabella (full history starting in Nursery) had no signs of epilepsey before she was three. All was going well. She had an accident while under my mother-in-law's care. We immidately saw re-cession of potty training, speech, awareness, problem solving she was three at the time. As things progressed she was "un-diagnosed with a Siezure disorder of some type". The doctors feel that it is in part related to the injury, which there were a lot of un-answered questions.

So, My mother-in-law (god bless her!!!) imidately targeted that I was adopted, had no history, therefore the epilepsy came from that. This was spread throughout the immidate family. Now, I am a self proclamed red-neck and proud of it. So since the accident I have held my mother-in-law accountable (reasons will surface latter). This was a clear dodge to her self to avoid dealing with the conditions of the accident. And to avoid her Alcoholism and Perscription drug addiction.

So, with out even having actual genetic test done and based soley on my lack of history the genetic question was steaming up many of the perceptions of our family. Fueled by my nut job mother-in-law.

We felt isolated and my wife's condition worsened (more latter in kitchen). What-Iff's were abound, after all we had 2 more children allready and one in the oven. My wife was destroyed. We were constantly bombarded with calls, accusitions (simple partial?), and GUILT TRIPS! from every one.(again more latter). It was an open box of Rattle snakes.

Being a heavy wory type and thinker I fell into Deep Depression! And Sulked on the whole adoption thing and what it ment to my family. After some medication, futher conenplation (darn near 2 years), many other accucations (including shaken baby syndrome because i used to pop isabella in the air and catch her) I had an anwser apear!

I told my mother-in-law to close her mouth and take a hike. Until she stopped doing what she was "doing" she would not hear from us. Futher to that, no one else would unless they played by my rules. Only one, no speculation. It does not help. Then I changed my phone number, changed my phone number a second time, and a third.
Until the whole family got the point. We All have progressed past that now, thankfully.

The rather long winded point came out with a conversation with my very well educated family doctor during a depression check up. I will share it the best i can...

Genetics??? So what. Really, does knowing or not knowing really make a difference. It may be an active part, mabye not. You still have to live life tend your kids/wife/self/family. Forget it.

Deal with the issue at had. Your health, your baby's health. Tell the nay-sayers to take a hike, change your phone number if you have to. None of my other kids have any issues.... Yet!

It will just make you stressed, loose stomach lining, sleep, or worse! My wife has severe post partum depression! and a good chunk is from my daughters situation.

Good luck.

if the mom to be is not up to telling the family and fiends to shut it. Some one else should.

[NAS]

As a foot note, I put "s p ?" in brackets. It is to mean im un sure of the spelling not Simple Partial. The darn computer keeps changing it... LOL

[skillefer]

*chuckle* LMT , none taken...