That just breaks my heart...and I feel exactly the same as you...just no good

answer...poor sweet little one and so much pain for those parents. I am

adding a prayer to yours for the same and for some kind of coping ability

for them and for the baby to be free from pain and feel only the love.

I have sympathy for her mother, Trinity Lewis, but not empathy. The child is in pain. Hopeless, incurable pain. There is no way I can understand a parent wanting to continue this.

I agree with dedtired and graywings123. It seems to me like the kindest, most loving thing to do would be to set that poor child free. No living being should be forced to endure a life of endless pain and suffering. Would I feel the same if it were my child? I don't know.

Rusty

Rusty I'm with you all the way. My one side says let the poor child go and out of misery but I've never walked in those parent's shoes. One thing I've learned over my sixty-some years, I should never say never. I've been in the position of almost losing a grandchild and a son and believe me, being in that place will teach you a lesson in being kind to the will of others who are in desperate situations.

Having gone through a similar tragedy 31 years ago, I can say I empathize deeply with both sides. We chose to discontinue life support (on New Year's Eve--as soon as tests confirmed our worst fear--not caring that it was a holiday). That was such a horrible time. I still feel that we made the right decision, however, I would have fought, as this mother is fighting, had I believed that our son would have had hope for any quality of life. I would not want to make that decision for her.

(((mama goose)))

I don't know what I would do either. I like to think that I would let my child go.

This is totally self-serving on the part of the family. That poor little baby is in excruciating pain. What kind of "loving parent" sits there watching their child suffer, knowing that they could end the pain with a few words to the doctor, but instead chooses to put a poor helpless infant through this? For almost a year! Dr. Duncan testified: “She is in pain. Changing a diaper causes pain. Suctioning her breathing tube causes pain. Being on the ventilator causes pain.”

Poor little Tinslee is left to suffer while she is being used as a political football. Also, hospitals have limited resources. I can't even imagine the monetary cost of intensive care for a year, the burnout of the staff watching her needless suffering, or what happens to the other patients who needed that unavailable bed and medical attention.

I learn so much from all of you. Hugs to Mama Goose. Yes, you can’t know until you’ve been there.

Unfortunately, this is the downside of the medical advances that have taken place in our society. People who would have died a natural death can now be kept alive almost indefinitely by medical intervention. Prior to these advances, this type of painful decision was taken out of the hands of the family and the medical team as nature took it's course.

I really feel for the family, and I can't know what they are going through as I've never faced a decision like this, but it's not fair or compassionate to allow that poor little girl to go on like she has been with no hope of improvement. I hope that the family is able to find the strength and courage necessary to do right by this little one who has never known a day without pain and suffering.

Mama Goose, I'm sorry that you had to face such a heartbreaking decision. Hugs to you and every other parent who has been in that situation.

Hugs Mama Goose....I am sorry you had to make this terrible decision... no one knows what decision we would make until we had to make it.

Baby Tinslee also has sepsis.

It's heartbreaking. I feel compassion for her family. Tinslee is suffering. The nurses and doctors who are tending to her feel like they are also causing her pain.

The sadder story is the obvious failure of this family to want to understand and accept the expert advice they were given long ago. I don't know if the right word to describe them is ignorant or arrogant (to dismiss and ignore what they've been told) but perhaps it's both.

The poor baby was born with life-ending complications. It's sad but it happens. They need to accept reality and stop fooling themselves into thinking that their actions are changing the baby's medical situation in any way.

I think every comment here is valid. I also feel bad for the medical team that is forced to deal with this every day, but I suppose that's what you have to be able and willing to deal with if you pick that profession.

Gut wrenching all the way around.

Prayers for the medical team, prayers for the family and prayers that God takes that poor sweet child soon.

So sad! I agree with all of you - the child is suffering and if this had happened years back she probably wouldn't have ever "lived" this long. I'm sure the mother is heartbroken and clinging to whatever hope she has that a miracle might happen. Tough call. I'd hope I'd be strong enough to make the right decision in this case, which I believe is to let her go. : (

I don't know the whole story ... she made it to eleven months, despite the significant heart defect. Poor thing, was she able to experience any joy, any love, any happiness, like every baby deserves (but doesn't always get)?

I'd have to believe the doctors and nurses were as hopeful, as determined to give this baby every possible chance, as her mother was/is. But sounds like it's time. Sad all around.

DawnInCal, I agree that medical intervention should not always occur. Seriously, keeping someone alive when they will always have to rely on life support & without any quality of life is cruel. My heart goes out to anyone in that position ... I can't imagine how heartbreaking that must be.

44 years ago I gave birth to almost full term, low birth weight Trevor Jay. He was doing great until the third day, when he took a turn for the worse with bleeding in his brain. He was born in a hospital I was sent to when my OB realized he was in trouble and it was a topnotch OB facility about 2 hours from our home. When T. Jay went into a coma, the hospital called my husband, but it was taking hours for him to come. I was with my baby -- he was in an isolette , so I could only hold him with my hands, and he was blue-ish and on a ventilator and unresponsive and every so often the heart monitor would go off and a nurse would come an tap him on his feet and his heart would start again. I knew he was dying and hoping he wasn't in pain and asked the Pediatrician if I could "pull the plug" (medical talk -- I was an R.N. -- for taking off the ventilator) and he said yes. I was waiting for my husband to come to say goodbye and then take T. Jay off the ventilator and let him die in peace. There was no hope for his survival and I prayed he wasn't in pain. The point is, I wanted to end my incurable child's life because he may have been in pain. And I loved him more than life itself and didn't want him to suffer. I guess this mother is still hoping against hope and not facing reality. And it appears that both of them are suffering because of that. Maybe because i was an RN i could face reality. This is such a sad situation for all.

Thank you all for sharing your thoughts and feelings - I agree with most of it, and as Mama Goose and drewsmaga have shared (and thank you mothers for reliving, I'm sure, some of that pain for us), it is a hugely heart-wrenching/shattering experience.

It does take major courage to accept the judgement of the medical professionals and make that decision to cease treatment when improvement has long been seen to be hopeless.

It is very difficult to be a faith counsellor to families whom you respect and love while they undergo such pain, and support and encourage them, walking with them as they make that fateful journey.

((((((((Mama Goose))))))))

((((((((drewsmaga))))))))

ole joyful ... most of the time

So many of us in the western world have come to see death as "unnatural" and want doctors to do everything they can to keep a loved one alive. Often doctors are horrified at what they must do to frail, dying people because their relatives refuse to let them go. We all must die. When it's time to go, it's time to go.

Of course, it's hard. Life is hard and asks a lot of us. Life breaks our hearts. But denying that death is the end for all of us can be very cruel.

Sooo many truths shared here. Life is messy and we seem to be doing our best to ignore and deny that in this modern society. Often times there is no one answer that sets it all right again. That is a fantasy. Reality is there are lives that deal with tragedy like this one daily. The idea that anyone outside of the situation having an opinion/judgement is what I rail against. This is not a situation to be turned into a circus side show. Speculation from the outside does no one any good.

I hate that things like this are turned into a media circus when it seems like this should be kept private. I really feel for all involved. However, we the people, make the laws and policies which govern situations like this and if we don't even know about them, how can we decide how we want those laws written?

Our medical technology has quickly outstripped our moral and ethical guidelines about things like this and so many other things, like purposefully having a new baby to harvest bone marrow to save the life of an older child - when neither of them are old enough to consent. That's just one example off the top of my head.

We can keep more and more people alive, from the beginning of their lives or at the end of their lives, but is it the right thing to do? Is it always the right place to use our resources? I think we, as a society have to have those tough conversations. And we won't have them unless we know about what it is we need to discuss and decide.

It's sad all around. It's sad for the baby. It's sad for the parents/family. It's sad for the medical facility. If people understood what the doctors, nurses and other people there go through they'd get some compassion too. It's sad for a judge to have to make the decision. And it's sad for all of us to see this happening. But this is life and life can be sad at times. I think the parent(s) are being unreasonable and yes, even selfish. I fully understand their situation. I've been in situations that are terrible but it doesn't change the reality. Is she making this effort to keep the child alive for the child's sake or for her own? I suspect it's the latter.

This reminds me of situations where people have pets at the end of their lives or in critical situations where they're suffering and the pet owner won't do the right thing and let go. I know how hard it is to take that step. But a responsible owner must do it. There's more to consider than their own feelings, wants, and desires. Some will be upset to analogize pets with people but there's the right thing to do and the wrong thing to do and I think that prolonging the child's agony is wrong, wrong, wrong.

And yes, I'm very glad that I can armchair quarterback this instead of it being my decision. I hope I know what I would do in the situation if presented, and I hope I'd do it, but I can't really say what I'd do in that position.

Heartbreaking situation, and each post I read , I agree with. I guess I mostly share my sympathy and do agree with Ritaweeda that I cannot decide. So sorry for everyone involved and I guess thankful (poor choice of words) to not be directly, personally involved.

May this torture end...immediately. This is beyond 'sad'. A baby is in terrible pain, but, rather than our laws protecting the innocent, they are allowing the torture.

I suspect if the family was personally providing the care they might feel differently (actually inserting and suctioning the endotracheal tube, inserting the needles for intravenous catheters, inserting the bladder catheter, inserting the spinal needle to obtain cerebral spinal fluid for culture, trying to deterime which & how much analgesic, paralytic, and sedating medications should be administered to relieve pain & suffering without causing more complications, etc.). Is forcing these painful and futile interventions on the child - a form of child abuse?

Not to mention if they were having everyone they know/need, working as many hours as needed, to pay the bills every day for this futile situation, I wonder... The resources being spent...

mdln knows what she's talking about, more so that others here.

"It does take major courage to accept the judgement of the medical professionals"

No, I think it takes common sense or even just basic intelligence.

joyful, you mentioned something (out of context in the discussion) about faith counselors but there's some relevance. In these cases, it's often when people are blinded by well meaning but ignorant faith views that these tragic situations develop. Including the very publicized one of the brain dead woman some years ago in Florida.

Apparently in Texas and likely elsewhere, physicians have the right to ignore guardian or advance directive holder instructions if they believe them to be medically inappropriate. At that point, they can offer to transfer the patient to another facility. Apparently that was tried in this case and no hospitals were interested in taking the patient. Physicians can't be forced to do what they consider to be inappropriate. The lawsuit filed by the parents was to overrule the state law and require the hospital to follow their wishes and the lawsuit was unsuccessful. A case of clear thinking, thankfully.