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#1 of 26 Old 07-02-2008, 06:17 PM - Thread Starter
 
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Hi there. I don't post much here, in fact I don't post much on any of the bulletin boards that I check (there are NOT that many). I am not looking to start a debate or make anyone uncomfortable, but I am asking about death, so if that's not a topic you want to read about you may want to stop here.

My son Reese has a mitochondrial disease. He got the worst of the worst, I think, at least it has affected him more significantly developmentally than most kids I have come across. I am pretty sure he knows who we are, but doesn't usually do anything to let us know that. He has started smiling and really seeing things, but there is little "typical" response to anything and if there is once, it is not guaranteed to happen again. I just got back from a conference where everyone had so much hope for a cure and hope that their kids will get better and live long and happy lives (many are cognitively intact, the mito affects other areas). We are not expecting for Reese to get better and I learned of an epilepsy syndrome at the conference with a very poor developmental prognosis. The EEG pics that were shown could have been Reese's and the description was him.

I am discouraged and sad and hopeless. We decided a long time ago that we want Reese to have a natural death and have abstained from getting a g-tube and have signed a DNR/DNI order for him. No one at the conference talked about this and I am feeling like I am not a very good mom for not hoping that he will get better. I am questioning our decisions for his care. I am struggling with what our decisions are for him and for us, although I know they are not exclusive. It just makes me so sad that I don't have hope for him to change. Shouldn't a mom be a kid's biggest cheerleader and truly believe they will rise above expectations??

I know that many of you have much higher functioning children than Reese, but would appreciate any insight into your thoughts on how you decide how far to go to save their lives or to change things. I know that each family is different and will make different decisions based upon so many things. I know that I will never get the answers that I want. How does a parent decide how far to go to save their child's life?

Thanks for reading. I am sorry for such a depressing, difficult topic. I just have very few other places to go to ask.

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#2 of 26 Old 07-02-2008, 06:46 PM
 
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mama

Couldn't read and not post.

I've written and rewritten this post 3 times and just couldn't come up with anything adequate.

We have had some dark nights with DS1's asthma where we weren't sure we would make it to the morning. I can't imagine living with that everyday.

Be strong mama and trust yourself to know what is best for your child and your family.

Sorry this isn't more helpful.



Martha

p.s. Your boys are absolutely gorgeous.
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#3 of 26 Old 07-02-2008, 06:49 PM
 
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This is a good topic. I'm glad you started the thread.

And welcome! I hope you will post more so that we can get to know you a little.

You are in a difficult situation. I'm in a different difficult situation because my daughter is higher functioning and has great quality of life (IMHO). She is at some risk for dying from her diagnosis but most likely will not die from it. It's always a fear for me though.

I wish I had some helpful thoughts for you. Your feelings and plans are in no way wrong. In the same situation I truly think I would make the same decisions. I'm sure there are a lot of people that have made similar decisions and I know there are a few mamas here that have made similar decisions.

As for being your son's main cheerleader - you are! But it's okay to be realistic, too and it's maybe even emotionally more healthy in the long run.

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#4 of 26 Old 07-02-2008, 06:58 PM
 
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There are a couple of moms here with very sick mito children. I will alert them to your thread so maybe they can give you some insight. I wish you peace, no matter what.
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#5 of 26 Old 07-02-2008, 07:01 PM
 
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Nena.

I don't think there's a one size fits all approach here because all children are so different and as moms we're all different. I don't see it as a black and white issue, a right vs. wrong. I think the answer is just so individual.

The answer lies in your heart. For us, with our son we feel like we can't stop until we have an answer because WHAT IF there is something treatable. Or what if there isn't now but there is in 5 years? We know he has mitochondrial dysfunction, possibly mitochondrial disease, but without a genetic mutation we don't know that it isn't possibly caused by something else. What if that something else is treatable?

Now, at the same time I will also not put him through a menagerie of tests simply to satisfy myself. For us though I feel like I cannot rest until we've exhausted all of our options in terms of possible treatment. I don't believe either that cure for Mito or Epilepsy will be available in Emeric's lifetime but I don't give up hope either because I can't. I have to hang on to something or I feel like I have nothing. Emeric is stable and yet I think about death frequently with his situation. It probably isn't warranted as his issues at least at this point aren't life threatening but I know the uncertainty of life itself and especially kids like this with complex, undiagnosed medical issues.

I think we would take some measures to keep Emeric alive. If he needed a G-tube I would do it although if it didn't help I don't know that I'd keep pushing for more and more. If that makes sense. I guess I really don't know because I'm not there. I would probably want to rescusitate if there was a chance for a good quality of life. If not then I would also sign a DNR.

For me it all depends on quality of life. If there are things I can do to intervene and they will help his quality of life then I'm all for it. If it wouldn't change anything then I'd probably say ok, let's not do it.

In terms of quality of life I think Reese seems to have a very high quality of life in terms of being well loved, cared for, not in obvious pain, etc. and that is so important.

I don't know if that was what you're looking for. Sort of a lot of mumbo jumbo so I'm sorry.

You are an amazing mother Nena. A mother that chooses to intervene does not love her child anymore than a mother that chooses not to intervene. In fact, in some instances I think it's much more selfless and loving to let a child pass rather than keeping them alive just because we can't bear to lose them. That is how I feel at least.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#6 of 26 Old 07-02-2008, 07:26 PM
 
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s Linden has a probable mito diagnoses and we see dr K in houston in less than 2 weeks. He's cognitively in tact, so a little different. We does have a g-tube and o2, so we have taken some measures already. But as of now we don't have a DNR. We figure that we will know when it's time. When he struggles more than he has enjoyable days we will think about it. For now though as long as he's happy and enjoying himself we don't have anything like that. It's a hard decision to make and there always seems to be two conflicting groups. When we were testing Linden for SMA I looked up a lot about it and there were some pretty impressive spats between parents who chose the no tube no DNR route, and those who took every measure to keep their kid clinging to life. I think my opinion on it is that as the parent, you will know what is right for your child. Either way, it is the most difficult decision to think about. s
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#7 of 26 Old 07-02-2008, 07:26 PM
 
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I believe it is 1,000% up to the parents (assuming they are loving, caring parents who are truly doing what they feel is best for their child and their family, which I'm sure you are).

There may have been other at the conference who felt the same way you do and couldn't voice it. Have you looked for yahoo groups? I have realized there are yahoo groups for everything, even the two extremely rare chromosome disorders my daughter has. It may help to know you are definitely not the only one out there who feels this way.

Having never been in your shoes, it's impossible to say what I'd do or how I'd feel, but I do know that during pregnancy I knew I wouldn't try heroic measures to save a micro-preemie, and that if a relative of mine were terminally ill and asked me to make sure they died peacefully, I would (as a matter of fact this has been asked of me and I signed the legal papers). I don't see any difference. You know your son, you know your heart, and living at all costs isn't what life should be about. I have nothing but the ultimate respect for what I feel is an extremely brave and unselfish decision.

DD1 7/13/05 DD2 9/20/10
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#8 of 26 Old 07-02-2008, 07:53 PM
 
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I don't think that your feeling the way you do makes you less of a mom in any way. Being a cheerleader for your child doesn't mean that you live in la-la land. You know what's in front of you, and him, though you don't know exactly what the timetable is. Realism doesn't lessen your advocacy or reflect poorly on your love or commitment to your son. In fact, realism demonstrates, as 3peanuts suggested, a sort of bravery and honesty that, in the end, will support all of you.

I've struggled a whole lot with the decisions that we've made in intervening for Grace - was it right to do? Was it okay to cause harm in order to, hopefully, gain something? Was altering her body, permanently, mine to do?

Really, though, all we can do is trust ourselves. You know you love him. You know in your heart that letting go is the right thing to do for your family. Allow yourself to question the choices, but don't allow yourself to question yourself. Does that make sense?

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#9 of 26 Old 07-02-2008, 08:57 PM
 
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s

I don't have a post yet, I need some time to think about how I want to respond.

My son has a chromosomal deletion syndrome that in its worst form could be fatal (involving severe heart defects, which thankfully he was spared from, and immune deficiencies, which he unfortunately struggles with) But for now at least, he is mostly stable and is most definitely happy. I have intentionally not allowed myself to think much further.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#10 of 26 Old 07-02-2008, 09:05 PM - Thread Starter
 
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Thank you for your gentle responses. I have learned that often I just need to put what I am thinking out there for someone to read, they respond gently, and I feel better. I know there are no easy answers. My gut tells me that we are doing what we can and what we should, but my head tells me that no mama (or daddy for that matter) should have to follow her or his gut on these issues. It's just another unfair part of this journey. I am meeting with a grief counselor next week that I really like. I have found met with him before and his wisdom is invaluable.

I can say that Reese's life is full of love and snuggles and he will leave this world knowing nothing else. I would guess that is why he chose us, because no one can love him better.

I appreciate being able to put this out there without judgement. Thank you all .

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#11 of 26 Old 07-02-2008, 11:47 PM
 
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You as parents know the right thing to do for Reese.

We chose to get Lily a g-tube, but she does have a DNR/DNI already in place. :

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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#12 of 26 Old 07-03-2008, 12:20 AM
 
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This is an impossibly awful thing to have to face, to have to decide.
You know the truth is 50 or 100 years ago there wouldn't be this question. The technology to keep people alive when their bodies couldn't do it just wasn't there. In many countries even now--this wouldn't even be a decision. You haven't decided to have his body fail him. That is happening. You are deciding to not prolong things. And no I don't think looking at reality and accepting it makes you less of a mom in any way at all.

Andrew is mildy affected by mito so I've not faced these hard things with him. But I watched my sister decide to let my brother in law go after an accident. He lived for a week. It was horrible but in the end she had peace that she was making the best decision for him. It is brave to let go. I believe there are worse things than death for those facing the dying. And depending on your religious perspective...I think life here is a short blink and an often painful one.

In the end my sister did have peace. I hope you also find peace in your decisions. Honestly, I think I would make similar ones but I would never dare try to put myself in a place where I've never been. I'm sorry you're there. Thank you for your honesty. I think these things need to be voiced. Then people don't feel alone.

He is loved greatly--that is so obvious.

Rachelle, mommy to 8 year old boys! 

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#13 of 26 Old 07-03-2008, 12:37 AM
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i think you're his parents and you love him and so you'll know what to do.
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#14 of 26 Old 07-03-2008, 12:47 AM
 
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No words of wisdom from me for I know you will know in your heart what the right thing for your family is. There can be no right or wrong in these oh so difficult experiences in our lives. You love your son and that's very obvious. Be gentle with yourself. I hope you come to peace with whatever choice you make.

Normal is just a setting on your dryer.
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#15 of 26 Old 07-03-2008, 01:43 AM
 
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You've received such wonderful posts, so I won't repeat too much. There is no right or wrong here, only what you feel is best.

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#16 of 26 Old 07-03-2008, 02:23 AM
 
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Nena
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#17 of 26 Old 07-03-2008, 03:13 AM
 
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All I have is a gentle
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#18 of 26 Old 07-03-2008, 03:14 AM
 
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There's no right or wrong answer and you are definitely not a bad parent if you get a DNR. Of course, many people are not going to agree with you (I'm not saying here, but IRL more likely) but you don't have to discuss it with anybody if you don't want to (I wouldn't personally). I just read about a little baby that was actually brain dead and the parents decided to take her off life support and they got hate mail from people questioning their motives. Ummm...okey dokey. Some people will never understand.

Anyway. DD has a different diagnosis but some similar issues. She does have a gtube and receives 100% of her nutrition this way. We don't have a DNR on her at this point but honestly we haven't even talked about it. I've brought it up to DH and he keeps ducking out of the conversation. I know it's difficult for him to try to wrap his head around. I think if she had another HIE event or a severe seizure that caused more brain damage, or if she was placed on a vent, I might want to discontinue care. It's hard to say what I would do. I hope I would be able to think clearly during such a crazy time.
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#19 of 26 Old 07-03-2008, 10:03 AM
 
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I tried to express what I'm feeling but it all sounds so stupid. My thoughts and prayers are with you and your family.
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#20 of 26 Old 07-03-2008, 10:49 AM
 
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Hi, GSmom. I was a para to a very disabled girl three years ago. In fourth grade, she was shorter than the kindergarteners, had a deformed spine, needed to carry and oxygen tank 24/7, and was very developmentally delayed. We all loved her, praised every baby step of progress she made, and she's had surgery after surgery, but common sense tells us all she's not long for this world. And it is so hard. I felt like SOMEBODY out there was to blame. Knowing that her situation wouldn't ever truly improve was tough.

Are you a bad mother for not having hope for a cure? Not at all. It doesn't mean that you don't love your son.
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#21 of 26 Old 07-03-2008, 01:42 PM
 
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I don't know if this will help at all, but I wnated to share my story a little. I was pregnant with a very much wanted little girl 5 years ago. I was diagnosed with severe pre-eclampsia and HELLP syndrome at 24 weeks. The doctors decided that to save my life, they needed to deliver my baby immediately, like within 2 hours of diagnosis. I was told she only had a 60% chance of survival and there would be severe complications if she survived. I found out later that due to IUGR, she probablly would have been blind, deaf, had cerebral palsy, severe mental retardation etc....
As they were wheeling me into the operating room, a huge part of me was hoping she wouldn't make it. I didn't want her to live a life that challenged, full of doctors, operations, procedures etc. Of course my fleeting thought did not have anything to do with the outcome. She survived for an hour but was unable to breathe on her own. And for a long time I felt very guilty for having that thought. I have come to peace about it now, knowing that letting her go was much harder than keeping her here would have ever been. I guess what I am saying is that sometimes the greatest act of love a mother can give her child, is to let them go peacefully, with dignity. Sometimes, being a cheerleader means fighting to the death, for a sacred death. Only you know if that is the right thing to do for you and your family.

Before you were conceived, I wanted you. Before you were born I loved you. Before you were a minute old, I would have died for you. That is the miracle of life. ~Maureen Hawkins~
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#22 of 26 Old 07-03-2008, 02:15 PM
 
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Hey there,

I stumbled onto this post from the main page. I don't know anything about your son's particular condition. But I did want to speak from the position of having made that decision. My daughter had a cord accident at her birth and the brain and other organ damage was very severe. We made the decision to take her off of the ventilator and she died about 24 hrs after that, 4 days after her birth.

We were fortunate to be transferred to a children's hospital with a lot of wisdom and experience in their NICU and a team of experts that was able to run a lot of tests and share with us the reality of the results of those tests in a way that we could understand.

So I guess the first thing that I wish for you is that whatever situations you find yourself in, you have the same. The final decision was ours but we were never really alone in it - we had time and attention from the whole team - doctors, nurses, technicians, chaplains.

My experience with that (and it is very personal) was that my husband and I came to understand that our role as Emily's parents at that time was not to extend her suffering in order to preserve our dreams. We were entirely willing to restructure everything in our life to give her a chance - easily said, of course, when your child is a newborn, but we did take the time to explore it and to talk to people who had real knowledge. We knew that we were not making the decision out of fear or inconvenience but out of concern for our child.

On a religious note we did wonder a little bit very briefly if we should "have faith." After discussing it together our consensus was that our beliefs (not insulting anyone else that thinks differently!) are that God does not cause suffering to infants to test the parents. We prayed on it in our own ways and I think that is where some of the peace came from - I felt that God had sent us the expertise that we had to help us to make the right choice and have faith that it was okay to disconnect the ventilator and accept what happened next.

Again this is VERY personal and I only bring it up because I think sometimes any discussion of faith is supposed to belief in the "big miracle" of a cure, or a happy life. And sometimes that is the case. In our case however we felt that the miracle was a little more muted and the acceptance of a lousy, lousy outcome was where the grace occured.

That said, and even with a fairly cut and dried situation as these situations go due to the extent of the damage, it is not a decision I think I will ever feel entirely good or unambivalent about. When I hear about stem cell research of course I wonder if we had managed to keep her alive for 10 years if things might be different. But I guess I have come to believe that when it is a life or death choice, it might be even scarier if I felt sure. I can't be sure that I did right on some objective scale in the universe. I can only know that I did what I believed wholeheartedly was right at that time. The questions I live with now are a natural outcome of that whole situation.

We experienced some family backlash about it and it was fairly awful, but because we had had time with people who truly knew all the facts of the case, and who had seen both outcomes for other families, my husband and I have not felt that maybe those family members are more right than we were. Just insensitive and ignorant on the one hand, and caring and believing what they believe on the other.

Again this is something that is so dependent on your particular situation and beliefs. I am so sorry that you have to be considering these things for your son. I hope that there's something useful for you in my and my daughter's story, whatever you decide or whatever comes your way.

~ Mum to Emily, March 12-16 2004, Noah, born Aug 2005, Liam, born January 2011, and wife to Carl since 1994. ~
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#23 of 26 Old 07-03-2008, 10:48 PM
 
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You are NOT a bad mother.

To my husband I am wife, to my kids I am mother, but for myself I am just me.
we're : with and : and
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#24 of 26 Old 07-04-2008, 01:14 AM
 
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Big huge hugs. I loved the photos of your sons, both are beautiful.

Before I had my DD I would have thought that fighting to the end was the "only" way, but now after seeing her (and reading posts here) go through test after test, being poked with needles, MRI's, CT scans, all the therapy, Dr. appointments etc...and it is not close to what a lot of other children go through...I just can't do anymore to her, and I want to believe that I would be as strong as you are if she was in the same situation...to let go and just stop. Although our situations are different, I can understand why you feel the way you do.

You are more of a good Mother than you know. You are willing to let your child just "be" which is very difficult.
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#25 of 26 Old 07-04-2008, 01:47 AM
 
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A few years ago, a friend of mine found out during her pregnancy that her daughter had trisomy-18. She and her husband decided not to use heroic measures to keep their daughter alive. Even from the outside, it was obvious that all their decisions were thoughtful and loving.

During my visits I saw that her daughter only knew love. My friend, too, had to balance realistic expectations with hope. Trying to decide if a g-tube was right, once her daughter got bigger and stronger (she could never eat by mouth) vs. knowing who to call and what to do if her daughter died at home. The struggle, dealing with these, was enormous, but the grace she showed was enormous too.

The depth of love parents feel in a situation like this is obvious even to people like me who have never had to deal with something like this personally.
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#26 of 26 Old 07-04-2008, 02:11 AM
 
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Hugs! I have a friend (not on this board) who has a 5-6 year old dd with mito. they have a caringbridge site, too. The mom is a wonderful person and very educated about mito. She is a very realistic person and has done 120% for her dd, but is prepared for the future. Pm me if you want her contact info.
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