To pull the plug...of Life. Why do the Dr. make you choose :(

Recently had my first baby girl Mia on October 14th 2009. She was born only at 23 weeks and 5 days....the whole journey has been complicated. I went to see my OB for a routine check up and he told me that I had to go to the hospital and check myself in bacause I have bulging membranes. I had no idea what I was happening. After a week on bed rest in the hospital my water broke and I had an emergency c-section. The doctors wanted me to terminate the pregnancy because of the survival rate but I thought otherwise. It's been 7 week today that my baby is here and she is having some complications. They started feeding her on the 2nd week and she has symptoms of NEC for the past month her belly is big, swollen and purplish. Her heart has a huge PDA and she has a brain bleed with hydrocephilus....so they want me to pull her plug. The Dr. said she is to delicate to have any surgeries and since she is in the oscillator ventilator it makes it harder for her to have any surgery. I can't see myself pulling off her ventilation plug...she hears me when I talk to her she looks for me, she smiles when I make a goo goo sound to her and she moves around a lot. How can I kill her? I think the Dr. should operate on her and if she does not make it then that is a different story....am I wrong?

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we too were given that option on one of our boys. he was too small for surgery, on the high freq vent, bleeds, hydro.... everything you named but nec. i said the same thing about him looking at us, gripping our fingers...

at the drs amazement he did pull through, we are blessed.

so sorry you have to face this difficult situation. God bless u and your sweet baby Mia

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I'm so sorry you have been faced with this kinda of decision . All I can say is that God is in control and if she is not meant to pull through I think God will take on his on own timing . Pray to God for comfort and guidance . You will be in my prayers God bless you .

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I know exactly what you are going through. Our son was born at 23 weeks, 2 days. We were given the statistics on survival and of the disabilities he might have. We were asked by the Dr. on 3 (that I can think of ) occasions if we wanted to pull life support. It was such a tough, excruciating experience. Our son had bilateral brain hemmorage, PDA, ventilator issues, kidney failure, shunt placement, etc., etc.... Of all the preemies issues, the only thing he did not experience is NEC, and I know that is quite an uphill battle.

We were in the same situation as you. We prayed that God would make it painfully clear if we should pull life support or not. At one point, the Dr. gave our son 12 hours to live.... long story short is that our son pulled through and we don't regret our decision to let him live at all! He will have some major uphill battles in life, and already has shown signs of issues. But, he did make it and we are thankful each and every day of that.

My advice to you is this - come up with a list of criteria in your mind of milestones or goals you want your baby to reach in order to keep life support. It sounds like you are inching your way toward that decision with the litmus test of surgery. I would heed the Dr's good advice, but don't let everything they tell you decide the future of your child. One Dr. told us that our son would most certainly have Cerebral Palsy, over 70 surgeries in his lifetime, maybe wheel chair bound... basically a vegatable. Now, some of those things are certainly a possibility, but our son is no vegetable.

When we were struggling with the decision to pull life support, I remember being very concerned about pain tolerance and to what degree our son was feeling any pain. Looking back on it, he most certainly felt so much pain through each one of his 5 surgeries in the NICU. We had to weigh the amount of pain he was going through vs. if he could survive and make it through surgeries. He needed the surgeries to survive... but if he is in so much pain and he didn't have the strength to even make it through a surgery, is that still the right thing to do? Just another point to think a lot about.

Please contact me if you have any other questions! 23 week old babies have a lot stacked against them and many do not make it, because it is just too hard outside of the womb that early. I am so sorry for what you are going through and even typing this, I am remembering how horrible it is. Definitely praying for you today. My email - jessi.bennion@gmail.com

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I'm so sorry that you and your baby are having to go through such an ordeal. I'll be thinking about you and wishing you the best.

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My eyes are filled with tears, as I type this. I can not imagine what you must be feeling. This is something that no parent should ever have to decide. My heart goes out to you. I will keep you and your little one in my thoughts and prayers. Please know that we are all here for you...

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Congratulations on the birth of your little girl. I know it hasn't been an ideal situation, but I also know you wouldn't trade the time of getting to know her, for anything.
I have a similar story. Bulging bag at 24 weeks, held on until 25.1 and had a 1lb 3oz boy. At day 6 of life, he suffered an intestinal perforation, it was presumed NEC, but I still don't think it was.
He had dropped below a pound when (I think) his umbilical line went bad, causing a severe drop in blood pressure. His little body shunt the blood to his extremeties and when it released, fragile blood vessels (like in the head) and organs suffered, and the perforation occured.
Though there was a suspected brain bleed, it turned out to be a restricted duct that caused a bit of hydrocephalus, that ended up resoving in 24-48 hrs.
But the bleed was of little concern compared to his swollen, purple belly. He became septic with the contents of his bowels throughout his organs.
His surgeon, was very frank about his chances, and would not perform surgery. He said he was too fragile and would not pull through a surgery. He did do a bedside surgical procedure, a pemrose drain in the side of his abdomen to allow the belly and leakage an exit.
The drain was in place for about a week. Slowly, and I mean s l o w l y, my son recovered. Before we could ever offer him "food" he got staph infection/ pneumonia.
Over a month on the oscillator, and several months of vent support.
Many times my husband and I had difficult discussions about life support.
Here is how I always looked at it- this helped me... I told him (my son) if at any point he could not endure this any more, he could leave. That I wanted him here more than anything, but I would not pull at his life for my own wants. I told him that I needed help understanding what was and wasn't working. So my husband and I agreed, as long as he continued to fight, so would we. I spent every day with him like it was the last day I had. I was fortunate to be able to live at the hospital with him, and could watch his hourly, daily and weekly trends. These trends allowed me to really learn when he'd had enough, what would help him and what would set him back. I stopped feeling like I was torturing him and started to take on the battle with him, just in a different way.
I tried to never do anything or allow anything that I could be sorry for later. To me that included being unsure about pulling life support. And that's how I went through 6 months with him in the hospital.

One day close to discharge, still with notable dependancies on oxygen and and NG tube, a nurse asked me, "When did you know he had made it?"
Honestly, I didn't know, had he made it? I was so busy taking one minute at a time... I can't say I ever "knew".

We all do what we feel is right for our children in our heart. You will hear many, many miracle stories on this site. And hardships as well. At the end of the day, I think you just trust your instincts and heart.
No one knows the outcome for their child, and each is different. Jessi said it best, you are praying for God to make it painfully obvious, and it just may not ever come that way.

I'm so sorry you are faced with these decisions, no one should ever have to be in charge of "letting their child go."
I wish you much strength and peace in your heart as you make it through the next months, years.
Amy

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Amy-
Your words brought tears to my eyes. They way you dealt with your suffering is truly an inspiration to every one of us. How you talked to him and gave him you blessing to leave. I cannot imagine facing what you faced. I am humbled by you. So many mothers on here face this question, and I think you can offer them so much by your experience. Thank you for your post.
Mizzcarla-
I am keeping you in my prayers and in my heart. I cannot imagine your pain, I hope you have plenty of loved ones supporting your at this difficult time.

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I am crying right now reading your post and remembering Oct 14th very clear. That was the day we were asked the same question and choose to let our son go home to God. Our son was born at 25 weeks, only weighing 12 ounces. He had IUGR, 3 infections he was fighting, many little problems preemies have, PDA as well. He lived for 48 days and in those days he had bad ones and great ones. He started feeding right away and then was taken off for kidney failure and this is when they found his infections. Then he restarted food twice more I think and he could just not do it. At the end we realized he had NEC. I was the one at the parent discussions saying "I would never ever pull the plug on my son, that as long as he was fighting we would too" And then came Oct 14th and we got the call that he had a bad morning and things did not look good. From the second we got there I knew it was over for us. The look in his eyes was "he had enough". I had two choices. We could let him continue with tests and antibiotics and the pain of it all (even though we knew the chances were grim) or we could choose to hold him and comfort him as they took the breathng tube out and he passed. Honeslty in the end I can say we made the decision to let him go, but i dont think thats the case. God called him home and he was ready. He would have left this world no matter what I chose. But for me I take comfort in knowing he was in my loving arms until his very last breathe. Hardest things you will ever do as a mom. But I hope and pray as you go along the decision will just be made and you wont have to. Please email me anytime and we can talk erica36@comcast.net.

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MY eyes are full of tears. you will be in my prayers.

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Hello,

You and your family are in my thoughts and prayers. I have a very similar situation in April of this year I gave birth to twins boys at 22 weeks and 3 days gestation. The doctors told me that my kids had less than a 5% chance of survival. My baby Zamai which was twin B passed away after 12 long days hear on this earth. And my oldest son Zamere is still in the NICU he is 7months old and doing well. But just as your baby had problems so did my son. He was on the Jet Vent for a long time he had to get PDA surgery, he had a drain placed in his belly because his bowels perforated he had has laser eye surgery, he has had catracts removed from his eyes and at one point in his life he had a condition called capillary leak syndrome and he was only around 1 1/2 pound when this occured and my son swelled up to alomost 6lbs of fluid around his heart along with that he had bi lateral brain bleeds and for the most part my son will be blind. The doctors to gave me the option to pull the plug on my son but I couldnt do it he was a fighter and proves it stiil today! Until recently he was doing great the doctors biggest concern is his eyes he wants my son to be able to have some what normal vison one day. Today i just found out that they were going to try bottle feeding him. He just started eating about 3 weeks ago and he is 7 months od because he had to get a major oeration on his belly, but my son made it. Pray!!

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I had a similar situation. I had twins in August 2007 at 24 weeks, 3 days. My daughter was 1lb 3oz and my son was 15.5oz. One day we got the call that my son was not doing well. He was in 100% O2, on two blood pressure medications and not urinating. They told us his body was shutting down and couldn't take any more. They said if he survived he would be a vegetable and the best thing would be to hold him and unplug him. After discussing it with the Dr. and looking out at the church across the street, I said I valued their opinions but I want another Dr. who has never seen him to take a look at him and see what he/she thinks. I thought people get second opinions all the time for surgeries etc.. what about for a life or death situation. The Dr. agreed, I don't know if the same Dr. took a closer look or consulted with another Dr. but they did an x-ray and found out his PICC line had gone through his fragile vein. All his IV nutrition was going around his lungs. That is why he couldn't breath or urinate. They had to drain his lungs. I am so glad I made the decision to continue on. He is such an active little boy and I often think back to that day. That same week, my daughter wasn't doing well breathing with the vent. We were standing around her while they had to keep "bagging" her. I asked them to give her steroids anything and they said it was unethical. Thankfully, a respitory therapist walked in, made an adjustment on her vent and she was fine. That was a close call with her where we thought we would have to make a decision. I prayed so much (and still do). I really believe someone was/is watching over my little miracles. I feel we are very lucky and blessed that they are both doing so well. Please pray and have everyone around you pray. Ask the Drs questions, push them for second opinions anything you need to do to advocate for your child. I am sure you will make the right decision.

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I reread your post and remembered that my daughter needed the PDA surgery and she was on the vent. I don't remember if it was the hi fi or the conventional because she went back and forth between the two. She was in a local hospital that did not do the surgery so she had to be transported into the city. At first the Drs told us she would be fine but then when they called us about our sons situation (previous post), the Dr. told me that she didn't think either of them would make it. My daughter did get transported by ambulance into the city about 15 miles away and had the surgery. She did just fine, although about a month later her stitches had not dissolved and got infected but antibiotics took care of that once the stitches were manually removed. I kept her in the city and begged/pleaded/cried to have my son transported into the same hospital the next day. I kept them in the city until they came home. Just wanted you to know that my daughter did fine with the surgery.

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Hi- I am so sorry you are in this situation. I am as well.
almost the same story- expect this is my 2nd daughter. A second preemie. my first daughter was born at 28 weeks and we were so lucky with her- she is perfectly fine. I had my second daughter two weeks ago - same thing. went to the doctor for the ultrasound, told me my cervix was opened, had to go straight to the hospital. after 1 week in the hospital I went into labor and my daughter was born at 23 weeks. She too is on the High frequency venitlator, she has a level III brain bleed, an infection, severe edema and her stomach is purple, skin is terrible. She has a large PDA that has not closed yet with the medication, but the doctors cannot do anything to her until her infection clears up. They keep asking me the same thing and giving me these horrible statistics and percentages. my husband is worried about our other daughter's life and ours as well. I feel like i'm the only one fighting for her life. (besides her so far of course!) my daughter too turns her head when I talk, read or sing to her and just opened her eyes. I can't tell if she sees me yet, but she turns toward me.
she moves her arms and feet a lot and I just don't see how it's ethical to make this kind of decision. It's agony.

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Pray for the answer. Thats what we did. Addison had nec she was sick for 3 days. SHe was purple and swollen. When the pain medicine stopped and we could clearly see she was in pain we asked to stop treatment. It killed us. Then 3 months almost four we were asked to stop treatment for her twin Alexa. And I prayed Lord I couldn't do this again. My daughter fought so hard I was not letting her go due to CLD but then it happened not a week later she had a Bradey and didn't come back up. She was gone. The Lord knew we couldn't handle doing it twice so he took her. And I'm thankful.

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It is impossible to tell you what will be right for your child as every situation is different. I work in a children's hospital assisting in pediatric open heart surgery as well as general surgery, so I see all of these kids at various stages of life. there are so many times when I see these babies enduring one pointless surgery after another when they are basically vegetables and always thinking to myself why don't these parents just let them go? They don't have any real life to look forward to and most will never leave their bed. then I think who am I to say what I would do if it were my own child. I would probably be totally selfish and fight to keep my baby with me know matter what their condition.

Well on Dec 17, 2008 I gave birth to twin girls, both weighed exactly 1 lb 4 oz. My daughter Haley had a grade 4 head bleed and at 8 days of life she developed NEC. As a result she went into liver and kidney failure. As I sat at her bedside listening to the Dr's tell me that there wasn't anything that they could do for her and that she wouldn't survive the transport to the hospital to have the surgery my heart fell! I looked at my little girl, so tiny in her isolette, swollen from the infection and knew what it is I had to do. On Dec 25, 2008 the Dr's removed her breathing tubes and placed her in my arms for the first, and only, time. I can only take comfort in knowing that I was holding her to my heart as the life went out of her tiny body...and took my heart with her.

Now the hard part comes. Even though I know in my heart that I did the right thing, I can't convince my head of that. I feel so much guilt over letting her go. I wonder everyday if I didn't give her enough of a chance. Should I have at least tried to get her the surgery. Not to mention wondering what I could have done differently with my pregnancy that may have kept them in longer. I blame myself everyday for her not being here with us. Her eyes were still fused so I never even got to see what color they were and even something that trivial is enormous to me. I feel like I took her twins sister away from her. This is the part they don't tell you about. You have to make sure you can deal with your decision before you do something you can't take back! I'm so sorry you have to go through this and I will hope that things will get better for you. If you ever need to talk my e-mail is Laurancam@yahoo.com

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Thank you all for the responses much appreciated. Today the Dr.spoke to the surgeon and they can't operate. They say she is very delicate and would not make it. They started her on 3 antibiotics again so let's hope and pray that they make Heather better. The Dr. Wants me to consider signing the DNI- do not interbude. I already signed the DNR so I'm praying for wisdom from God and do what he wants me to do. I'm going to see how the antibiotics are going for a week and re-evaluate the situation. I don't want to be selfish and keep my poor girl here suffering. So prayers are needed for me for. Wisdom and for my baby Mia for a miracle. Only God has the last word. I will continue fighting for her until then

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to h.e diuble hockley sticks w some of thse doctors wanting to play God. i give them the respoect as they have studied and trained much longer than i have but i had to remind my self on a daily basis.. the word doctor is just a title they earned from studying... but they are reg people that have to eat to live. and have to wash their a.s to keep from smelling.... i say that to say this.. i trusted the docs to an extent but then id have to PRAY PRAY PRAY. my hubby and i were told on day 3 of my babies life. he didnt see my baby being viaable. and that if we wanted to pull the plug he would not be against it... ... sorry but wtf??? oh no.. .. no no no the power would have to go out and then the back up genertators would also have to fail and there are no battery operated machines anywhre... thats the only way my son was comming off ... and if good old neonatal jeremy marks could see my son now @ 42 months still thriving and loving life. going to school... babbling all day long... did i say he loes his life... the nerve.... i would have let my baby go w/o a chance.... hell no... sorry but jeremy marks.ump. the way we felt we wanted to drag him out back and give him the ole once over.. OMG if you could see my baby now .. yeah he as cerebal palsy..lung disease he had 2 brain surgeries ofr ivh brain bleeds grades 3/4 and has a vp shunt .. so what ... i wouldnt trade it . yeah he has 8 doctors following him now..no he is not walking. but he has braces/afos and he loves to try...yeah he is 3/12 years old now and jus to hear him in his baby voice try and mimic me saying momma.... OMG I LOVE IT. he is jus now trying to pull up on furniture. he can reach the vcr and the buttons on the tv..he gets into so much and he likes the attention whn he knows he is wrong and still does things anyway and then will crawl really fast the other way whn you are after him.. and i say stop running ...... damn neonatologist jeremy marks... for trying to force **HIS** will on us.... no its not easy we still have our day to day struggles asa family of a special needs child... but i wouldnt trade that over the funeral jeremy marks suggestted we start planning...... sorry for venting... but honey.. be strong. and be prayerful.. stay prayerful...plese dont give up.... if yur baby looks for you she is repsonsive to your cooing her.. she moving.. she is fighting.. OMG... its not gonna be easy PLEaSE DONT GIVE UP please...if she doesnt want to fight she / your baby will let you know. and will stop on her own......keep praying and be available in that nicu as much as posible....... thanks for letting me vent.... dont give up

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My family will pray for baby Mia... you are all in our thoughts and prayers!

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Wow... this really puts things in perspective for me as I read how difficult some of you have it... I am so sincerely sorry that you have to make such decisions. I have a 24 weeker who is doing well. His biggest issue was his PDA and his breathing so far...

You came here for opinions... no one can give you the answers that you need. But, there is NO way I could give up on my child... if my child let go, I would accept it. But, I could NEVER pull out my child's breathing tube... No doubt you will have a long, excruciating journey in the NICU... but NO DOCTOR can tell you that your child will not make it or not have quality of life - by who's standards?! Miracles happen every single day! I see it happen all around me in the NICU! One of those miracles went home yesterday!

I will say prayers for you... and your baby! I believe in the power of prayer/s!

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Talk Talk Talk ..SIng SIng SIng to your baby. Your baby will get strength from that.

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