My son was born with severe brain abnormalities. The doctors at Children's Hospital told us when I was 7 months pregnant that my son would be severely disabled and not progress past the age of a 5 month old. Their advice... Go to Kansas City and have a third trimester abortion. I remember sitting in the conference room with 12 medical professionals and thinking, weren't they called to the medical profession to save lives? How could they so easily give up on this unborn defenseless and helpless child. I wanted this child so badly. We planned for him. I took prenatal vitamins months in advance of the pregnancy, I stopped going in my hot tub because I didn't want to mess with my body temperature and this was before I was even pregnant.
The hard truth is that some situations are hopeless. For those that pray for miracles have you ever heard of an amputee that grows back their limb? Would you even pray for that? Now I know that people can adjust to life without their limbs but my point is that somethings are just not to be. How about the case when a child is deprived of oxygen for 20 minutes? Do you really think there will be a good outcome?
My son was born 8 weeks premature. He did not have the sucking reflux although I attempted to nurse him as I did my daughter. This left us with the decision to artificially feed him or not. My doctor as well as my son's pediatrician advise was to take him home on hospice. My prayer was never that his brain heal. Like the amputee I knew he was not going to grow a Corpus Collusum and I knew the gray matter of his brain that stopped developing normally at 5 weeks gestation was not going to miraculously heal. Instead my prayer was that my son not lead a life of suffering. Can you imagine not having the simple pleasure of eating an ice cream cone, of not being able to coordinate your body to scratch an itch or having the ability to communicate your wishes. How about considering the complications that come from lying in a bed or being held up in a wheelchair all day, everyday. Tumors that develope in the esophagus, ulcers, aspirating, scoliosis so bad that it effects your lungs and breathing. Do you treat all those conditions by medications and surgeries? Caring for a person likes this requires 24 hour a day care. Tell me what happens when I am not here to do it.
I went to visit my aunt in a nursing home on Sept 1. My uncle and I had just moved her in 3 weeks prior. I found her battered literally from head to toe. It took the ER nurse and domestic violence social worker about 2 1/2 hours to document every bruise on her body. Who could do this to a 74 year old woman suffering from dementia? I hope to find out although my aunt can not tell me. The police are currently investigating.
To those of you who think I murdered my child or starved him to death I ask you to think about your own life. Think about suffering a traumatic brain injury that will leave you blind, unable to speak, walk, or even enjoy a meal. What do you want the docs and your family to do? I am believer in quality of life. I also believe in the right to die. Just because you can do something does not mean you should. Next time you have a stomach virus think about your loved one force feeding you. Don't you know from your own experiences that when your body is not well you don't feel like eating or drinking. I agree it would be torturous to deprive a healthy person of food and hydration. A person however that is unable to eat and will never be able to eat does not feel hunger and thirst. Ask my 94 yo grandmother who has gone the last 3 days without eating.
My question... How many of you have advanced directives written? Have you stated that you want a feeding tube in place in the event you suffer a catastrophic brain injury for example? How about if you develop dementia and years go by with this devastating illness and although you know the final outcome is ultimately death do you want to prolong your own life by inserting a feeding tube when you can no longer eat? Perhaps you do. I will try to keep an open mind.
Wow, I am simply overwhelmed by the kindness each and everyone of you has shown to me. After reading the responses to the "Right to Life" post from yesterday I was nothing less than shaken and upset. I would have gotten rid of my account only I didn't know how:) It is amazing to me the support I feel from all of you. Thank you so much for sharing your thoughts and stories. This has helped me tremendously. When the decision you make results in the death of your child I think you can't help but play the "what if" game however unconstructive it may be. The trick is not to dwell on it because I am very blessed to be raising two healthy beautiful girls. Blessings!
I strongly believe in euthanasia... at any age as long as the prognosis is irreversible and cannot be overcome with medical intervention, so dire or terminal/chronic.
I have mentioned to my family that I do not want to be on life support longer than 5 years and if I'm brain dead due to lack of oxygen, etc... to let me go. Do I have this written up and documented for a large sum of money with a lawyer... no, I cannot afford to.
Hi JC, this is a very beautiful and important post. I hear incredible strength laced with no small amount of anger.
Every single one of us can learn and grow from your story.
Thank you for sharing. I admire you very much.
:)
My Mom has a Do Not Resuscitate directive.
She can not imagine a worse hell than to linger in a state where there is no hope for a return to a normal life.
She does not want money spent on it and she'd like a quick death if possible.
Everyone dies sooner or later.
First, I am so very sorry for the loss of your son. The death of a child is every parents nightmare. Thank you for sharing your experience with us. I'm honored.
This is a very thought provoking topic. You see, my mother has frontal termperal dementia. I "loving" call it alzheimers on steroids oh and yes she has that as well. She cannot communicate, she doesn't know who we are, she cannot take care of herself, she cannot walk, she cannot fed herself. It is truely a terrible, nasty way to go. When she received the diagnoses, she and I didn't really talk about it. I don't know why. I don't think I wanted to know if she knew how bad it would get, she did by the way. She and my dad had many conversations about what to do. She told him when the time came to put her in a nursing home and close the door and live life to its fullest. That's my mom! She told me she loved me ALL THE TIME!! I wish I had recorded it! I would do ANYTHING to hear she say that right now!
My point is that this isn't living. My mother died two years ago. This is a body with no soul. I wish for the body to go every night because this is NOT living, this is not life.
Until you walk in our shoes, no one can say what they would and wouldn't do. Yes, my parents have directives and I know their desires.
Thank you for being strong enough to share your story. It is both compelling and thoughtful.
I am so sorry for your loss. You had to make a hard choice, and my heart breaks for you. I do agree with you about quality of life. My husband knows not to go to any extraordinary measures to keep me alive should I end up in that sort of state, because to me that would not be a life anyways.
I supported my father when making the choice for my grandmother to remove her tube it was a very sad sad day, I seriously considered abortion when told my unborn son has 1 in 5 for tricomy 18 (then two days later called with "mixed up labs") - then I prayed for the mother who should have been notified two days prior that she would make the right choice for her family as I made the right choice for mine (whatever it was to be). I pray for you to have the strength to know what you did was right for you and your family and for you to do it again if need be. I think it is something you do not always understand until or unless you are or have been in the moment of those choices. Peace to you, and I hope you can one day become an advocate for these patients who need someone on their side when they can not speak for themselves.
I am sorry for your loss. To answer your question, yes I have an advanced directive, as does my husband. No heroic measures for us if we are considered to be brain dead or in a persistent vegetative state. No feeding tubes, no hydration beyond what will make us comfortable until we pass.
If one of my pets is in intractable pain, with no hope of any quality of life, I have it euthanized, and it is considered an act of mercy. But we are prohibited by law from showing this same mercy to members of our own species whose care we are responsible for.
I have an advanced directive and a DNR because I do NOT want to live if I can't have a decent quality of life. I don't want food pumped into my body when my brain is so far gone that I can't remember to chew food placed in my mouth. In fact, I have told my family that if I am diagnosed with a debilitating terminal illness, I plan to take my own life when I see the signs of debilitation, while I can still do so at a time and in a manner of my choosing.
And if I had had a pregnancy like you describe, I would have considered an abortion the kindest thing to do.
I am so sorry that you had to experience this with your son. I am in the process of writing a will with a directive. I do not want to be a burden on my family. I don't just want to be alive I want to live and living to me means not depending on anyone to take care of me.
You made the best decision for your son and your family. There will be people who will not agree but you can't worry about what they think. Things always look different if it is not happening to you. I wish you and your family love and peace.
.
Wow! Such a thought-providing post! First let me say that I am truly sorry for the pain you and your family have gone through. I, like you, believe in quality of life and the right to die. I would not want to live if I couldn't truly live and I wouldn't want to put my family through the pain and expense of trying to keep me alive just to lie in a hospital bed. Thank you for sharing your experiences. I am going to speak to my husband right away about advance health care directives!
DH and I both do, with power of attorney and estates very clearly indicated 4 people deep.
After the lady in FL (I forget her name) a few years ago with the brain injury and feeding tube drama...we set those up. BTW: I supported the decision to end her life.
I don't want to be a vegetable, nor a burden on anyone that would have to care for me.
Not sure if that addresses your question, really. But I agree with you. I believe in quality of life.
I'm so sorry for your loss. My heart goes out to you!! I'm assuming you're talking about another post. This is such a hard thing to talk about. People who are actually going through this not only are so extremely emotionally involved and overcome with grief but they know the FULL consequences of both sides. They get the medical opinion of the experts involved, the expert opinion of people who've been through it too and the unsolicited advice from family who are indirectly involved. Then someone comes along who doesn't know the situation, doesn't know the family and didn't talk to the experts who give their opinion one way or another and make judgments. I can see both sides only because I haven't been through this. It's a tough call to make for those on the outside looking in. Those going through it know what the right thing to do is (whichever way they go) but it's never easy, I can imagine. I wish you the best. HUGS!!
Bless your heart. This is the real world that we live in, and it pains me that certain others don't and can't relate to that when they go around preaching what they call "right to life". They condemn others who have to make gut-wrenching decisions instead of showing compassion. You are my sister, and I praise your courage. Only you could have decided the appropriate timing in how you handled that situation.
I cared for my terminally ill aunt until she died. She kept on trying to exercise even after she was too weak to get out of bed. When fluid started to settle into her lungs, she asked me to help her to sit up and cough. I knew that she would not survive that, but we had established earlier that she wanted to fight this thing. That was her right. I committed to fighting with her. Period. As long as she had breath and wanted to push on, it was my job to push with her. Some relatives thought that I was wasting my efforts. (Her birthday fell a few days before she died, and her mother thought that we shouldn't be telling her happy birthday.) That wasn't their call to make. It wasn't mine. I was committed to her peace throughout the process.
It's a very personal thing, and people should really be more compassionate and less critical of how we deal with these situations.
I am so sorry for the loss of your son. I can't imagine your anguish. It is understandable and logical that you would make your choices known based upon your experiences. That is what rational people do in life.
Thank you for trying to keep an open mind. I do have a version of an advanced directive in place. I say a version because many of you would say that because I don't choose to die - it isn't an advanced directive. Even my lawyer tried to change my mind. However, I am a Roman Catholic and I chose an advanced directive that says:
Health Care Decisions Should Be Consistent With Catholic Teaching. Any decision concerning my health care should be consistent with relevant teachings of the Roman Catholic Church. Those teachings are extensively discussed in the Declaration on Euthanasia which was promulgated in 1980 by the Vatican Congregation for the Doctrine of the Faith and which may be summarized as follows:
(a) Death is neither to be feared and avoided at all costs, nor to be sought and directly procured.
(b) Euthanasia is not permitted. Euthanasia is defined as the intentional ending of human life by act or omission in order to relieve suffering.
c) Modern pain control techniques do not, in fact, shorten life. However, the use of medicine to treat severe pain is acceptable even if, hypothetically, it were to shorten life. In any event, pain control is not the same as euthanasia, since death is not the objective of the treatment. Maintenance of lucidity is an important element in preparing for death, but severe pain should be alleviated to the extent possible.
(d) It is not always necessary to use all life-sustaining treatments. One does not have an obligation to pursue a treatment if its risks or burdens are disproportionate to its expected results or benefits. The concept of
burden is broad and must be individually assessed; it includes aspects such as pain, expense, risk, and inconvenience of the treatment as perceived by the person being treated.
I have a primary appointment and two alternative appointments in case I should be unable to make decisions for myself. I hope that my directive gives them the piece and legal authority to make the decisions that I would make for myself.
This is exactly why the $29.99 Suze Orman will is NOT enough.
C.
Hi J.C.
I appreciate the decisions that you had to make and my heart goes out to you... you have given me much to think about and I thank you for opening my mind to it. I can't imagine the pain you went through with the loss of your son. It is something I can not understand as I have never been in the situation with a loved one. You are strong for sharing your story and I hope you will continue to share it and help others who have to make this decision. I admire your strength immensely...
Best Wishes,
E.
I do not have an advanced directive in writing. My husband and I know each other's wishes. I would not want to be kept alive or fed if there was no quality of life left for me.
I am so sorry for the loss of your son. I would like to think I would make the same decision if I were in your shoes.
Hello J.C.,
I want to tell you I admire you and respect you so much! I think that you absolutely did the right thing for your baby. Your circumstances were unimaginable and the choices you were given were awful to deal with. I agree with you that everyone should have the choice of a quality life and completely respect those that choose different avenues for their family. May God richly bless you and I am saying a prayer for your precious baby boy. May he rest peacefully knowing he was fully loved and cared for. You are an angel. Don't let anyone question you or your beliefs. You did the best and made the best decision for your son.
P.S. Yes, I have an advance directive in place as well as all of my family members.
Take care,
M
