The choice to remove from life support?

Stephanie - posted on 03/04/2009

my husband and i had to make the choice to remove our 4yr old daughter from  ECMO.  she was born with several heart defects and after 3 open heart surgeries and numerous cardiac caths.  we don't know why she didn't make it through this surgery but we knew that we made the right choice. she was suffering and so was we. we shut off the machines and and held her one last time. its only been a month and a half but it seems like its been forever since she came in the living room and said " i love you"

Chrystal - posted on 03/04/2009

My choice was similar yet completly different at the same time. We found out during an ultrasound that the back portion of my daughters skull did not form. Due to this her brain grew outside. There were not able to tell exactly how much of her brain was outside and how much was inside the portions of the skull that had formed. What they could tell me was the amount of brain on the outside would continue to get larger and her skull would not grow any further in utero.

We were told if we were able to carry full term she had only a 3% chance of survival. If she survived the best case scenerio was she would be able to breath and swallow on her own. Unfotunetly since the front of her brain would most likely be just fine she would be just as aware as you and I but unable to do anything.

If we went full term I would have to have a C Section in a completly sterel room. They would take a portion of my hip to form the rest of her skull and she would be taken directly into brain surgery. The majority of the brain that was outside would have to be removed.

I was really good in Science and knew that that was not good. I was at the University of Iowa Hospital where some of the best surgions and neonatal doctors are. And I was still being told the chances were not good.

The alternative was to terminate the pregnancy. They would take a needle and inject her with a drug that would stop her heart.

As hard as it was this was the option we chose. Knowing that she would never have any type of normal life, and would be as aware as the rest of us.

It was the hardest thing I have ever had to do. It has been almost four years and my heart still aches. I can't even stay on this website long with out crying. However the regret has gone.

When she was born we found out that her brain stem was not fully attached and was also outside her skull. She would have died with my first contraction.

With time you too will come to peace with the choices that you had to make.

Bridget - posted on 02/24/2009

I am sitting here crying knowing what everyone has gone through, even though I think no one knows what it is like. My husband and I had to make the decision in October. I had a good pregnancy, everything was fine until I went into labor. My uturus ruptured and the placenta separated. I had an ememrgency c-section but my daughter was born not breathing. They were able to revive her and took her to Childrens hospital NICU. They had her on a treatment that was to slow down any further brain damage that might occur. It was unknown how much she had suffered the first day. After a couple MRI's they knew, there was no brain activity. The second day I got to see her they told us we had to make that decision. Never in a million years did I think I would have to make a decision like that. We made the decision to take her off after talking to the doctors. I did not want her to be in pain or suffer. That night around 9 they unhooked all her tubes and life support. We got to hold her as she died. I didn't think I could do it but I did. She hung on until 3 a.m. She lived 3 days also. I still question everything and I still get angry I had to make that decision. She is my angel watching over us now though.

Jennifer - posted on 02/12/2009

We also had to make this decision, my son was declared to have brain death, so there was no chance of him coming back to us, as a mother it was the hardest decision but the best decision I have ever made, if that makes sense, living on life support would not have been a life for my son.

Stephanie - posted on 02/12/2009

when our  4yr olddaughter had surgery we thought she was gonna come out of it it was supposed to be a somewhat simple surgery. but she had a hard time coming of the bypass machine and from then on she just slipped further and further from us. she ened up havving strokes that damaged her brain and her kidneys started to fail. we knew then that we had to let her go. it was the hardest thing ive ever done but i couldn't be selfish as much as i wanted to take her home she wouldn't make it.so we turned off the ECMO and then held her 1 last time. in a few days it will be only a month that she's been gone.

Marylea - posted on 02/11/2009

I had to make the decision but really felt like I wasnt being given a choice.My daughter was asleep and I realized she wasnt breathing.I performed cpr until the ambulance got there.She was 2 and a half months old and when the paramedics got there they were able to get her heartbeat back and she was breathing again but she had been without oxygen for so long that she was only alive because the machines were keeping her alive.I got to spend 24hours with her while we made the decision to donate her organs(I should add there is a little boy alive today that received her heart)In the end I had to make the decision to take her off the machines but I was not present due to the fact I donated her organs.Ive always felt angry though that there was no time for a miracle to happen.As crazy as that sounds I just felt like maybe if they had left her on a little longer a miracle may have happened but we will now never know.Realisticly I know she was brain dead but any mother I think would still look for a miracle right?In the end I was told she died from S.I.D.S(crib death)and that is was extremely rare for anyone to catch it just as it was occurring.Imagine knowing if I had checked on her one minute earlier she may be o.k today.Im still learning to get passed that idea.

Allison - posted on 02/11/2009

I am like many of you. I had to make the decision also to remove life support from my baby boy (Shadow) at the age of 5 days old. Shadow had Group B strep spinal menningitis. Dr's did many test and after 3 days of being stable but very sick, his brain showed no brain activity. This is not a decision any of us want to make, but often it has to be made. I chose to donate his heart, and a baby recieved it, but also about a month later passed due to complications. I know that Shadow is in Heaven, and is being well taken care of, and the only peace I have is knowing that I will see him again. God Bless You all who have gone thru this, and know that God takes care of all the babies.

Brittany - posted on 02/09/2009

My daughter passed of the same thing.

Brittany - posted on 02/09/2009

My daughter Taryn was 1 month and 3 days old wen she passed away. I deliverd her on November 22nd 2008 at 24 weeks and 4 days. Whenshe was born the thought that she might die never crossed my mind. My son who hd been born just 10 months earlier was born at28 weeks,and he has grown to be a big bouncy healthy baby. On Christmas Eve, I'm not even sure what time it was, but it was still light out, the doctor from the NICU called me at my parents house and told me that my baby girl was vey sick and that there was a good possability that she was gonna die and me and my boyfriend needed to get there as soon as possible. When we got there they told us that she had something called Necrotizing Endocolitis, or NEC for short. Basically what it does is cause you to die from the inside out because it eats away at your bladder and small intestines,and you cant survive with out those. At first I begged and begged or them to do anything they could to save my baby, but after awhile it became apparent that she wasn't gonna make it. Blood stared to come out of hermouth and her rectum, and her pooer little belly was so distended and shiny. We could tell she was in pain and we couldn't bare to let her go on like tht, so we told the doctor that we would let her go. That was the hardest sentence I have ever spoken in my life, but I knew it was for the better. My baby passed away at 12:14 am on Christmas morning, but I know now that I have my own special angel looking out for me.

Julie - posted on 02/09/2009

Dear Lyn, I was just reading your story and Im in floods of tears at the moment, what an horrendous thing to happen to u and your hubbie...The one place where u think she would be as safe as houses and that happend. I have a three yr old boy so I can relate to having a toddler and I have no idea wot I would do if anything like that ever happend to my little boy...

I just want to say, my thoughts are wiv u both and I know your little girl is in a lot safer place surrounded by nothing but love and warmth..

God bless to u both.... xxxx

Michelle - posted on 02/03/2009

I was 22 1/2 weeks along when when we made our decision.  Our son had multiple things wrong with him including skeletal dysplasia and fetal hydrops.  His organs were thriving but his chest cavity stopped growing and he filled up with fluid that started to enter his skull.  It was an impossible decision to make but a loving one....we did want him to feel any pain...he never would have loved to term.  He was born still on August 17, 2005.  The doctors and nurses gave us time with him and we have pictures.   A wonderful woman once told me....we take on their pain so they don't have to. 

Laura - posted on 02/01/2009

i did. with my son brendan . his bowel diedand doctors said it was only a matter of time before his organs failed. they would fail one by one so i took their advice and let them switch his machines off. its hard but it cant be undone if i could do it all again and not switch them off i dont think i would. after having brendan i fell pregnant with my daughter emma. my waters broke at 12 weeks and like your son she thrived until 28 weeks. but because her lungs were too tiny to support her doctors suggested i switch the machines off . i refused and she lived for 9 days but it was a constant struggle for her . there's no way to know if we've done the right thing . we can only be gratefull for the time we had . some people dont get any time at all xx

Melissa - posted on 02/01/2009

Hi Erica,

Our son was born at 25 weeks in March of 2008 and had that `honeymoon`period where they do really well for the first 36 hours.  He they began to deteriorate from there.  On the third day.  He bgan having serious complications that lead to bleeding in his brain.  We were given the option to either leave him on life support and watch him crash or to take him off life support gradually, at our own pace in our own room so that we were able to hold him and say our goodbyes before removing him from the ventalator.  His heart continued to beat for 2 hours while my husband and i took turns holding him and just laying on the hospital bed with him.  For us it was a difficult decision but the best decision if we had left on in the NICU and he crashed we never would of had the little amount of time with him that we did.   Both my husband and I know we made the right choice but you still feel guilty.  It was the right choice I just think that no one should ever have to make this choce when dealing with a child and I think that in some way part of guilt comes from the feeling that we have taken something away from them, their life rather than giving them thier freedom from pain.

Sadie - posted on 01/31/2009

At the age of 16. My boyfriend and I lost our son Evan. I was 20weeks along.  I had an incompetent cervix.  We had the choice of saving him, but the chances of him being disabled and blind, were very high.  We chose not to make him suffer.  The Dr. told us that he would only breath for a few short mintues.  But he was with us for 3 hours. It was the best three hours, and the worst three hours.  Now I'm 19 and we just had another son.  He's 2months and a week. Brady Evan.  I had to have a cervical cerclage put it at 13 weeks, and had strict orders throughout my pregnancie.  I delivered at 38 weeks. to a 7 pound healthy baby boy.  I think about Evan daily.  But i know for some very very odd reason, God needed him.  So really we are blessed knowing we have our own angel looking over all of us everyday.

Cindy - posted on 01/31/2009

my husband and i had to make that decision too, and it was horrible!  I always wanted to have faith to believe that God could heal my son no matter what, but after struggling for 6 weeks in the hospital he got an infection called necrotizing enterocolitis and within 24 hours he had deterioriated so much that they said he wasnt going to make it, and did we want to hold him for the first time ever right before he died?  I still couldnt do it so they had a nurse pumping oxygen over his mouth for us so that we could hold him but not completely take him off of everything.  Im sure that your son was like ours not going to make it with or without the equiptment, there is nothing to feel guilty about, you love your son and wanted him to live, he had health problems that wouldnt permit that, it wasnt your choice to let him die, it was going to happen anyways.  Thats what i had to tell myself for a while because i felt guilty too.

Amy - posted on 01/30/2009

Our son Ryan was born by emergency c-section. He had to be revived after delivery. He was transported to a NICU at the Naval Hospital so I only saw him hooked up in the incubator before he left. The next morning my husband was called to the hospital where he was. When he got there they had been working on him for a half an hour. The neonatologist told him that if he did recover that it wouldn't be good so my husband gave permission for them to stop. He held him and I can't imagine how making that decision felt. I only know that I felt guilty for not being there. Ryan lived almost 12 hours. He had velamentous insertion.

Sarah - posted on 01/29/2009

Hi there. I was full term and had a great pregnancy. During delivery my placenta abrupted and my little girl lost too much oxygen. She was Heart Flighted to the best NICU in my town but her little body just could not take it. I held her in my arms as she slipped away from me knowing the best thing for her was to let her go. I had them turn everything off. She is now my angel, but I will always wonder, what if?

Jamie - posted on 01/29/2009

God I'm sorry you had to make the decision you did. I went thru it too with my newborn son in 96. He died during delivery and went w/o oxygen for 8-14 minutes. They revived him and he went to rigorous testing until the specialists and doctors let us know he would need help breathing and 24 hour care his whole life and would never see the world out of a wheelchair. He was a quadraplegic from that point. It still makes me so mad sometimes that the choice was thrust on the shoulders of my ex husband (we were married at that time) I was 27 but felt like I wasnt old enough to make such decisions! I had to though, he was my son. They told us the conclusions on a Wed night, we called close family and friends to join us in a special room they had for us next to the NICU, and his support was removed. He lived for off support for 45 minutes in my arms for a total of 3 1/2 days of life. I was mad at myself then because I felt like maybe I gave up on him but my heart knew it was right for him and us. He's still with me and all around.

I feel for you and I'm sorry you joined the special mommy club but, you are still a mommy and a very special one at that.

Erica - posted on 01/29/2009

Thank you everyone for sharing your stories. It is nice to connect with others who share that agonizing decision. I too am sorry for your losses. We are nearing our anniversary days when I typically replay this over and over in my head and I come back to the same place, knowing that we made the right choice, but wishing it could have been different.

Genevra - posted on 01/28/2009

I had to make this decision, it wasnt hard for me but it was hard for my husband. Our story is a little different than yours. We had a daughter with spinal muscle atrophy who went undiagnosed until she stopped breathing one afternoon. we raced her to the ER where she was resussitated and intubated. we found out 2 days later that she had a terminal illness.

our medical technology puts us in an odd position, it can make us feel as if we are in control of things we cannot be. i wasnt thinking so much about the choice to take her OFF life support, i kept thinking about the decision to put her ON life support. that decision is often made at an emotional time without knowing the full picture.

i still vacilate. sometimes i wish she had died, right away, the first time - that is what was meant to be. sometimes i am gratefull for the 6 weeks we had with her in ICU, time to come to terms with her illness and the inevitibility of her death. of course that was for us, not for her.

sometimes life is very unfair. for us, this was all in summer 2004. i'm sorry for your loss

Shannon - posted on 01/27/2009

I had to make this decision. It was not a decision that I wanted to make but the doctors said basically my baby wasn't alive anymore and only the life support was keeping her body going. The doctors convinced me that it wasn't fair to her and that at that point nothing else could be done. I held her as well.

Lynn - posted on 01/27/2009

My husband and I also had to make the difficult decision to remove our 2 year old off of life support after being assaulted at her daycare. She had severe head trama and never regained consicious after the assault. They ran numerous test to see if you would ever recovered or if she had any brain activity. After the numerous tests and a lot of praying we decided to remove the life support and give her back to God. She died in my arms while we sang the ABC's to her. It was the day before Father's Day 2006 and it was the most difficult decision we have ever made. I live with the guilt daily if we made the right decision but I do know deep down in my heart she is in a better place and safe.



God Bless, Lynn*

Christina - posted on 01/27/2009

My daughter is now four years old. At the age of two, she was diagnosed with Mitochondrial Myopathy, Complex I. At that tender age, she had already endured an extended stay in the NICU, a pediatric rehabilitation facility, several hospitalizations, surgery, and the loss of many of her developmental milestones. The loss of her milestones was probably the hardest for me to endure. My once, vibrant little girl was "suddenly" reduced to a child functioning on a three month infant old level.

Her disorder is usually progressive in nature and often claims the child's life by the puberty. During one of her hospital stays, she had a very low heart rate, respiratory rate, and was generally not responsive. Several doctors and nurses rushed in and she managed to spontaneously recover. The next day, her primary specialist began talking whether or not I wanted to sign a Do Not Recessitate order.

Although this question had loomed about in the back of my head since her birth, I was confronted with this reality. She, thankfully, "recovered", and has continued to "recover" during all of her hospitalizations. I mourn the loss of her milestones and the daughter that I dreamed she would become and cherish the time that I do have with her. I am caught in the reality of both worlds.

I live with the knowledge that some day, I may have to make that decision. It is an agonizing feeling. I do not want her to suffer any more than she has already. I love her and I don't think that I can honestly keep her in this world for my own selfish reasons. However, I am not sure that I will have the strength when the time comes.

I am truly sorry for all of your losses. God bless you all!!

Rebecca - posted on 01/26/2009

I had to make a decision much the same. My so had a genetic disease, that he lived with for 9 months before it got bad. He was on life support for a week. They tried to take him off of it with no possitive results. I finally asked the doctor if he would ever be able to make it and he said 'No.' I told him to make him comfortable and let him go.



That was in 1999 and to this day I wonder did I make the right decision. 'What if?" I know I made the right decision, but sometimes I wish I had him back. I always try to think of what his life would be like if I would have left him on life support. I know he would not have had much of a life and feel that he is in a much better place.

Mimmy - posted on 01/26/2009

Teri - posted on 01/26/2009

I was unable to be with Bethany those few short hours after she was born, my husband was. He arrived in the NICU and they told him that they were helping her and setting everything up and that they would come and get him. He waited, It was quite a while when a physician came in and led him to our daughter, where they were working aggressively to save her. The physician told my husband that they had been working almost constantly since she was born to save her and they felt continuing would not help her survive however, they needed to know it was ok with him to stop. My sweet, husband had to make the decision to stop and to let her go. He was so strong to have made the decision, but knew that it was the right one for this little struggling infant. She lived for just over 3 hours. He did not tell me this until 3 months after she died. We were able to hold her and love her alone in my room, we looked at every part of her, touched her, smelled her and loved her and we cried together for the loss of our beautiful baby.

Teri

"I'll cry, or maybe stop someday, or just run out of tears."

"Wait for me, I'll be there soon."

Allyson - posted on 01/25/2009

I gave birth to twin sons in July of 2008. My beautiful son Kaden was diagnosed with Trisomy 13, and had been on life support from the moment he was born. I am thankful for those life-saving tubes, as it gave us 3 weeks with our little one. As the outcome for Trisomy 13 is death, we knew that Kaden would not be with us a long time, but even with that knowledge we struggled with the decision to take him off the ventilator. It was the hardest decision my husband and I have ever had to make. The doctors advised us that pneumonia could result in his already tired and fragile body, and I did not want that to happen to my sweet baby. He had already been through so much. Because of that reason, we made the decision to take him off. In that moment, I felt a part of me die, as I felt like I was failing him, or about to. We had all of our family there, everyone came to say goodbye. In the end, he left this world in his parent's arms, side by side with his twin, with all of his family around him. As they took his tube out, we told him how much he was loved, we showered his beautiful body with kisses, and we said our goodbye to our sweet little boy. In that moment when he was free of his tube, our sweet, strong little boy who was ever the fighter cried out to us, and let his voice be heard for the first time. It was the most beautiful sound I have ever heard, and I will carry his voice and his memory in my heart forever. Be strong in your decision, he loved you, he knew your love for him, and you honored your commitment to him, as his parents.

Jen - posted on 01/25/2009

A similar decision. I was pregnant with twins also. At about 8 months I found out my son's heart had not developed properly. Hypoplastic Left Heart Syndrome. He could thrive and live within in me, but not survive on his own. The choice was to have him whisked away immediately after delivery for a series of heart surgeries which were in development stages or make him as comfortable as possible. After long sleepless nights and medical conversations, we choose to have whatever time with him we could. As it turns out one of his lungs also collapsed and they would have rejected him as a candidate for surgery. He lived 9 hours and died in my arms in the NICU. It was 11 years ago and I can still feel him. I am forever thankful that he was peaceful and surrounded by our love when he died and that we got that time with him. His twin sister is perfectly healthy and I have always thought that he is with her. She can feel him too. But I still miss him everyday.

Libby - posted on 01/25/2009

I personally have not had to make this decision, but I was there when my brother in law and the mother of his son had to do it 2 years ago for their son that was 2 weeks shy of his 1st birthday.  While I know how heart breaking it was for me just being an aunt during that time, I can only imagine what you suffer as a parent in that situation.  I saw my BIL go through a depression, quit his job, had no motiviation, doubted God, etc, etc.  I think you might go through some of the same things as well.  And just know that that's OK.  You will get through this.  Even though it feels like you won't at times.  Just rely on the comfort of your spouse.  That is what I have found to be the most helpful during my time of grieving over our daughter that we lost at 20 weeks gestations just last month.  I'm also going to go to my first support group meeting on Wednesday.  God bless you and your family.  Little Jaren is playing with my little Trina right now.

Rachel - posted on 01/25/2009

My husband and I did for our son Deckard. It's been 3 1/2 years. He lived for 3 1/2 days. When we got his diagnosis we knew he wouldn't be able to survive even on life support. We had planned to take him off on certain time and day, so family and close friends would have a chance to say good bye. Like your son, Deckard's oxygen levels begain to drop and we removed him from support. We didn't want him to be in pain and struggling on the life support. We felt it was best if he went quietly and peacefully in our arms without machines hooked up to him. He did go peacefully. We have no regrets. It can be a tough decision to make, but we would make the same decision again if we had to.



Like grief, the chocies we make never go away. We just cann't let our grief or our choices consume us. If we did let them overcome us we wouldn't be able to get through each day. We wouldn't be able to move on. For me, I wouldn't have my son Ridley, Deckard's younger brother, if I let those choices bother me.



Erica, I support you on the decision that the two of you made.