For those who have had to terminate a pregnancy or remove life support

Chrystal - posted on 03/04/2009 ( 84 moms have responded )

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Almost four years ago I had to choose to terminate or continue my pregnancy with a child who would most likely not live.

My daughter, Kaitlyn, had a birth defect where the back portion of the skull didn't fully develop. This caused a large portion of her brain to grow outside her skull. We were told that she only had a 3% chance of survival and that if she lived the best case scenario was that should would be able to breath and swallow on her own. This was only a 1% chance.

If we chose to continue the pregnancy they would deliver her C section and take a portion of my hip to form the back of her skull. They would have to remove all or most of the brain portion that was outside of the skull. This would eliminate over half of her brain mass.

We were also told that she would be just as aware as anyother person as the frontal portion of her brain was fully intact. This was not info they offered but was an answer to my question.

We could also choose to terminate the pregnancy. If we did this they would place a needle into her heart and inject a medication that would instantly stop her heart.

We chose to let our daughter go knowing only the wamth and comfort of my womb.

My sister-in-law told me that I needed to give God the time to heal my daughter and that by letting her go I had not giving him this time.

Since this was all a converstion two years after the fact it made me again worry about the choice I had made to stop my child from a life of pain and suffering.

When I called my Grandma she told me something that was very helpful to me.

"In order for there to be good in the world there is also evil. God is not responsible for all the pain and suffering in our lives. Sometimes his gift to us is the strength to make the awful choice to send our child to be forever in his care."

I hope this helps others who have made the difficult decission to let go.

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MB - posted on 08/30/2012

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For everyone who thinks making the decision to terminate a pregnancy is an easy one, I would suggest you remove yourself from this page and leave grieving mothers alone. Making the decision to terminate is extremely difficult and is not done out of selfishness. In fact, it is done to spare your child of any pain or suffering. Our baby had Potter's syndrome, when they baby's lungs and kidneys are either not present or not functional. The doctor let us know that allowing the pregnancy to go on could result in the baby dying in my belly. This can cause trauma for a pregnant woman and prevent future healthy pregnancies. The decision was TOUGH and it hurt. No one else has the right to judge that. I believe in God but I am also logical. If your child is missing vital bodily organs, you can wait for a miracle all you want, but he or she cannot live. If you really believe in God, ask Him to pray for all the families who have had to terminate a pregnancy. Do not judge or make these women (myself included) feel guilt when they are doing what they know is best for their child. If you would like to test out the miracle method, I suggest you have your lungs and kidneys removed and wait for your miracle. Let me know how you feel after that.

Amy - posted on 03/07/2013

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hi am so sorry to hear ur story it must have been so hard i am going through simular i have already had two misscarages and i managed to become pregnant again i was so happy but also sooo scared i got to 5 months and the pregnancy was going fine i even went without any sickness.when i went for my abnormally scan it didnt look right so they sent me to another hospital to tell me my baby had a 20% chance of suvivil and 80% of passing away because my baby has developed lidney diplasia in both hes or her kidneys.. also i have no aminotic fluid in my stomache surrounding the baby which was risky anyway so i was also giving 2 options to terminate at 6 months which i really cudnt bare to do or go through till term knowing there was only a 20% chance my baby would make it through which was so slim and if baby did make it through it wud have breathing problems,joint problems,baby would be on kidney dialisis and need kidney transplants and possibly hanndcapped i already have two disabeld children so this news was so hard to hear i cant vare to terminate especially knowing the poor babys heartbeat would be stopped but i cant go another three months knowing my babys is most likley going to pass away anyway and the little time i wud have with my baby he or she would suffer i really canot make a desion as either way it looks like i am going to loose my third baby if any one can help me or relate to this post please repy..

Citxlali - posted on 03/07/2013

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HI Amy, I am so sorry to hear about what you are going through. I decided to terminate my pregnancy and 5 months through an induced birth. My baby was born without a heart beat. I regret it completely today. Everyday I think of my little one. If I had the opportunity to redo the past I would. But I can't. I have a 4 month old baby girl now who I am completely in love with and adore. When I look at her I think about the opportunity I took away from my first little boy. It really breaks me when I think that it was my duty to take care of him and I didn't protect him. I choose to end his life when I had the power to give him a chance. If you already have two lovely little ones, I suggest you really think hard about what your next steps are going to be. Pray about it. I will be praying for you to have strength to endure this.

Kelli - posted on 01/30/2014

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Well I guess I found something finally to talk about what has just happened to my husband and I as I can relate. I don't want judged I'm looking to talk to other mother's like me. Here's my story I have 3 healthy kids and lost there father to cancer had my tubes burned, then I met the love of my life who excepts my kids as he has no kids. so we did IVF first round failed , second round 1 took as I didn't have very many eggs" so as you can tell baby was wanted" . had ultrasound at 12 weeks everything was fine that night I had gushing bleeding went to er , everything was fine followed up with ob, bleeding continued for 5 weeks had another huge bleed went to er to find out I had no fluid in the sac. went back to ob referred me to high risk doctor and, told odds were not good for my health that my water broke at least 2 weeks go and I had placenta Previa. They gave us the option to terminate or try to wait it out as long as I could but chances to me health were not good for infection and hemorrhaging. So just Jan 29 2014 we terminated the baby as wishes my husband didn't want to know the sex we couldn't find out because you could hardly see anything on ultrasound , I wanted too, to a point, well case worker came in and told it was a he my husband was upset. I'm so lost I need someone to talk to it's been really hard I try to block it out with other issues , but its too hard and I'm lost. I believe in god and I feel I've done wrong. anyone please respond I'd love to talk to someone who's been through this.

Brittney - posted on 06/13/2014

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Hi everyone, I'm new to this all but I'm also going through what everyone else is going through. I'm 22 weeks and 4 days. I just got told my baby boy is diagnosed with a severe case of hydrocephalus which is fluid on the brain. Half of his brain is not even developed. This is my first pregnancy and this is the worst news anyone could ever tell me. I have talked to many drs and they all say very severe. I saw it with my own eyes on the sonagram. I don't believe in terminating either but I couldn't see bringing my son into this world with no life and having surgeries for the rest of his life. I chose to terminate and I go next week to get a D&C. I'm so scared but god has plans for all of us and his plan is not to harm any of us please remember that. We might not understand why but everything happens for a reason. I ask why or why me but you have to be strong and know God loves us all and he will make it right. I am ok at times but then as soon as I close my eyes I break down. God will take care of all of our children and let them know that their mommy and daddy love them so much, but in our cases our babies need to be with the Lord its the right thing to do. When this is all over this might take me a while to get over this but I will share my story to help other people that need help. We are special people and he picked us for some reason so don't give up.

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Tanya - posted on 03/24/2015

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I know you wrote this a very long time ago but I am going through a very similar thing right now, i have just found out one of my twins is in heart failure at our 20 week scan, he is not going to make it according to the specialist, we have chosen to let nature take its course as to do anything would risk his brother and we though we can keep him with his brother until it is time. It is heartbreaking to know that when it comes time we will be mourning one twin while celebrating the other.

Conny - posted on 09/06/2014

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Its 1:00am and cant sleep and have not slept for the past three days. i have been looking for a website to post this question of mine. its a long story therefore i appriciate anyone out there who can give me an advice on what to do or at least anyone who can share similar situations. im 34yrs old, i have a 17yr old(different relationship). Now i have been with my husband for 12yrs, and have been trying to conceive since we got together. Last year we were finally blessed with a beautifull daughter. Iam now five months pregnant, went to anatomy scan and doctors came back with devistating news about my lillte baby having all these issues. they told me she has a Cleft lip/palate, Kidney problems, and Heart problems. I was Shockedand devistated as i stood up and listened to all of this.
The very next day i had a series of appointments, of heart specialists, genetic counseling, then the amniothentisis. my husband and i spoke about the fact that the cleft li/palate was a cosmetic issue, and thought many people live with one kidney, so i waited to see what the heart doctor said. after almost two hours in the sono room, the director of the pediatric heart division spoke to me and told me that my baby does have heart disease, and she had to tell me the baby will defenetlly need multiple open heart surgeries, within 3-6 months, thats if baby can handle the surgery. she said one of the problems will be fairly easy to fix, doctor said she has ASD(Catrial Septal defect), VSD(ventricular septal defect), she also said its rare to see that she has both, but what concerns her the most is the fact baby also has Ebesteins Anomaly which conplicates the fact that baby may be born prematurely, and may not survive the open heart surgery, doctor said i have to take in account the fact that she has all the oher issues. later on that day i went and got the amnion done, and told doctors, that we have decided to terminate the pregnancy,
My problem now is i dont know what to do, the heart specialists told us that there are many couples that decide to terminate the pregnancy due to the heart issue alone. i thought my baby has many and honesly i dont think i want to bring a child into this world to suffer, at such an early stage of their life and not knowing if is going to survive. I feel soo guilty for making the appointment to end my pregnancy, i spoke to a family menber who automatically called me a criminal for what im about to do. she is catholic and her beliefs are very strong, shes also very critical. i am also catholic, but i feel that technology is there to help us make decisions. i also believe in god, and think hes testing my faith, with all that is happening.
i have been reading many horrible cases online, and have been crying for many nights about this decision im going to make. My husban is also devistated and very supportive.
Please anyone with advice i will greatly appreciated, again i apologize if im in the wrong place posting this as i really need advice. my heart goes out to every one here who have already made the decision to send their angels to heaven.
i have to say that my procedure is scheduled in two days, and feel guilt, anxiety, i cry every single time i feel my baby move inside me. need an advice.
thanks for reading my long story.

Alysha - posted on 05/11/2014

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Last summer I found out I was pregnant. The pregnancy was not planned but I was beyond happy at the thought of bringing this little baby into the world. My ultrasound revealed that I was pregnant with twins. My excitement continued to grow as the technician told me there were two heartbeats. I then found out that my babies were sharing one placenta and one amniotic sac. There were so many complications that could arise throughout my pregnancy. The chance of survival of my babies would be slim. I had never believed in abortion until I thought to myself how could I live with myself going through with this pregnancy if my babies would be suffering with abnormalities and complications because of my decision. Today is Mother's Day and would have been my very first Mother's Day. I am having a very difficult time. I think about them every day and what could have been. I was 11 weeks pregnant when I had my abortion. Nobody I know understands what I'm going through. How can someone move forward from this? I feel as if I'm never going to be okay with my decision to abort but also feel that it would have been selfish to have kept them.

ROBIN - posted on 03/13/2014

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I so sorry about your lose my daughter found out that Isabella wasn;t going to make it NTD and she is 61/2 mths. my daughter said she hasn't moved in 3 days so we know she is with God that is the only thing we are happy about we are gonna have her creamated she was a blessing. mt daughter is such a strong young lady thank GOD but she goes to the dr. again 3/17/14 and there gonna do a c section .but we are strong ladies and so are ya'll i will pray for you and the choice you have had to make its gonna be o,k 'ROBIN KNOBF

Nora - posted on 03/11/2014

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March 19, 2013, I had to terminate my pregnancy (24 weeks and 5 days)... All doctors and nurses agreed it was the best decision for the baby. My baby had a severe case of spina bifida. After so many years of treatments and IVF... they took away my only chance of being a mother, my only hope of having a family... I hate my self since. Every day, I ask his forgiveness and hope he knows I love him and miss him and did not want to harm him... Even if I want to forget, my body keeps reminding me.. Every time, I see a handicap boy out here laughing, enjoying life, I feel bad inside... I keep saying to myself (my boy could be happy like him and I did not give him this chance...).. it is just a torture... I cannot even speak about to my husband who since that day became just another person... we are more like roommates than a couple... we just feel failure as parents...
I did not want him to suffer... Even as a normal person physically I suffered a lot...

Kelly - posted on 11/04/2013

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Hi i can relate last july i was pregnant with my fourth baby (different dad,his first) was so excited finally had a amazing man, and at our 19wk scan found out i was going to have my lil boy id always hoped for when they told us he had a lethal form of osteogenesis imperfecta. (Type 2) his bones were broken,twisted and 2 weeks behind his organs in the scan we could see him moving a twisting around and i couldnt feel my son kick. the doctors said he wouldnt likely survive the rest of the pregnancy and if he did he would die not long after labour it was the single worst day of our lives i remember feeling as if it wasnt real and i would wake up and it would all be fine. We made the tough choice and i gave birth to him on 21 july 12. A part of us died that day with our son we named him Noah and we held him and cried and hoped that he was no longer in pain,to help us cope we had a service for him which i am so glad we did and he is forever with his sisters, mummy and daddy in a special lil urn we got him.
I ask myself everyday why us, but i know that no matter how hard it was for us our son didnt suffer anymore than he had too because the precious lil time he would have had with us would of been agony. I hope my story of our forever sleeping angel Noah helps you in someway <3

Bhatt - posted on 09/14/2013

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I was so excited that I m pregnant and my first ultrasound shows that baby is there and breathing and then oh god ...what went wrong and 2nd ultrasound and then 3rd --- they found my baby is missing skull........this is my first excited moment....god has snatched my child....i was given a choice go with this and baby with hardly survive 2 or 3 hours or terminated this preg.....Being mom my inner heart does not allow to do cruel step with my baby.....oh ....that give me first that i m coming mom i m in your womb....and the next .....oh mom what did you do it to me.....i am half developed let me go.... ( i am breaking in to 10000 pieces today.....i will just go for abortion next week.......i hate my self for not able to bring my baby to the world :( i am sorry baby ....will miss u a lot...

Natzparker - posted on 06/08/2013

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Hi there, iv had a similar situation 2 a lot of u. Im so glad i found a site like this because i feel completely on my own

Neeti - posted on 06/03/2013

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I am carrying a child with Anencephaly. It was diagnosed before 2 days during my ultrasound on the completion of 12 weeks. My doctor advised a termination of the pregnancy. My husband and I are gathering strength for this. Though we have the emotional support from our families for it. My worry is, if I will conceive again. And if I do, next child will be a completely normal and health child. I cant live without the motherhood anymore and would like to go for my second child asap.

Pushpa - posted on 02/18/2013

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Thank you Chrystal I too had to go thro a similar thing in Dec 2012. I had an ectopic pregnency of twins Doc had to terminate it and I started feeling guilty of ending 2 lives but there was no chance of survival and it was already 12 weeks gone.... yes ur grandma was absolutely correct its GOD's gift to us to is the strength to make tht awful choice to send our children to be forever in his care

Michelle - posted on 02/05/2013

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awww honey, forgive yourself, dont blame yourself for this......im going throught this same thing right now, they said the same diagnosis to me, im also trying to find out why this is happening to give me a peace of mind when i make my decision.....this is the hardest thing we have to do, im glad you got to see your little angel and said goodbye to him.....he is with god and he is in a better place than if he was still here. He will always be with you, watching over you, he knows how much you oved him and wanted him and how hard it was to let him go.......peace and love to you.

Michelle - posted on 02/05/2013

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this has helped, i am faced with this difficult choice and im very far along, it hurts so bad cause i feel him move, and kick, i see his heart beating, i wanted him so much, i knew his name before i knew it was a boy............at the 20 week ultrasound they told me it was a boy, i was so happy, then the bad news.....he seems to be showing some brain deformities.........it makes no sense, its hard to believe, all my tests were normal and negative, im low risk for everything.....so now i basically hve a week to decide what to do, they cant do anything after 24 weeks, and im already 20w and 4 days........i had multiple sonograms, now im waiting for my amnio results (the FISH was normal) and today i had a fetal mri......i need this to make the right choice, i cannot just let him go like that....... but i have come to peace with myself that if i have to let him go, its because there was nothing to be done, and its gods will.....i cannot be angry

Myvxbaby - posted on 01/29/2013

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My story doesn't exactly 'fit' in here, but I wanted to share my story.

I am pregnant with fraternal twin girls, but at our 12 week scan we found out one of our girls had Hydrops (we still don't know the cause). We were told that she had a 0% chance of survival. We were also advised AGAINST her termination as it could send me into early labour with our healthy girl who obviously wouldn't make it being so small. Our only other option was to terminate the whole pregnancy which I just couldn't do.

I chose to keep my sick baby safe with me until it was her time to go. She held on until 20 weeks. I now have to continue carrying her until her sister is born.

If she was my only child, as hard as it is, I would have chosen to terminate. Usually I am against termination, but after the pain of HAVING to watch my sick baby pass in utero, it has taught me a lesson. Sometimes you have to be cruel to be kind, as hard as it may be.

[deleted account]

My son was born one month early and weighed 5lbs. Other than that he was perfect in every way. He was healthy and beautiful for three days. Three days we held him, took photos, visited with family...then March 12th at 2 am he quit breathing. A nurse came in to check his vitals and found him completely blue. After 12+ hours of fighting they finally stabilized him in the NICU but the combination of medications, seizures, and lack of oxygen were just to much for his little body. They told me on March 14th that they believed he was brain dead and that I needed to prepare myself for that. I needed to consider letting him go. Grieving someone who is right in front of you is hard. Someone that you can see, someone that you can talk too....and yet it's someone that can't see or hear you. March 19th they officially declared my son brain dead. That same day we took him off life support. I will never forget the heartache of watching him as he laid in my arms. They tried to tell me I needed to tell him it was okay to let go...I couldn't do that though. I told him to fight it. I prayed for some sort of miracle to save his life. For six years now I have beaten myself up wondering what would of happened if I had just given his body more time to heal. I don't always admit it but I can't help but blame myself. I killed my son, I took him off the very machines designed to keep him alive.

Citxlali - posted on 01/18/2013

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I had to go through something similar. I was still a college student and five months pregnant when my now husband and I found out our baby boy would not live. He had a two-chambered heart and anencephaly. During one of the ultrasounds, the doctor showed me the entire middle portion of his brain did not develop. The day I found out my heart sank and I just left crying. The look on my husband's face made it all the worse. They set me up for an induction the very next day. The doctor told us that our baby wouldn't live and if he did it would only be for minutes. They also told me the psychological implications on me would be hard if I decided just to go to full-term. We decided to induce. I had decided not to see him once he was born, but when they asked, my husband grabbed him. I had to see him too and he was the most beautiful baby boy I had ever seen. He wasn't deformed like I had imagined, it was all internal. What made my pain and guilt worse was the fact that I did not want him for the first 3 months of my pregnancy. As a student, on her last semester of college, I had other things in mine\d. Now I just hate myself for not loving such a beautiful boy, for being so selfish. When we found out he had all these deformities, I blamed myself. I still do. I ask God to forgive me for thinking about aborting him, for not wanting him. I feel like I didn't wait on God's timing. Maybe I could have witnessed a miracle, all that was required was a change in my heart.. I hope I get to meet him one day... If God ever forgives me for the things I have done.

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I had to terminate my first pregnancy with twins 2 years ago because my boyfriend at the time wasn't ready. I was pressured into the decision and will always regret it. I have since had a daughter and have a wonderful supportive partner though I will always keep my twins close to my heart. I don't disagree with abortion because there are many good reasons for it but don't let anybody make the decision for you as it will be with you forever.

Tasha - posted on 08/29/2012

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Almost 1 year ago to the date my spouse and I decided it was best to terminate our 24 week pregnancy with our identical twin daughters layla and emma. We were informed that they shared the same sac and that they did not split equally layla wasn't receiving much nutrients and even though emma was regualr size she was being givent too much blood and too much oxygen. they said layla would never live and she was dying slowly inside of me. There was a small chance emma could live if we immediately extracted her but she would be on life support and it looked as if her brain was under developed and badly swollen from too much fluids. we chose to let our daughters goto heaven together even though it was the worst and most traumatic thing thus far in my life that has happened. the doctors had me come in late in the evening to start a medicine that would start labour so i could deliver them he said they would live for minutes and we could hold them and name then. we went home and waited for the medicine to start which it did immediately i went to bed and in the night i couldnt stand it anymore so we left for the hospital. we didnt even make it 2 minutes away and i gave birth to my daughters in the front seat of my car in my sweat pants. for months even maybe now i feel anger that i never got my minutes with them i was traumatized . they both passed before we arrived at the hospital. i have not spoke much of this in a year but i feel this had helped me find a little peace.

Pro - posted on 08/28/2012

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Hello,



If your doctors tell you there's no hope for your pregnancy and that termination is the only option, I would recommend that you get a second opinion from PRO LIFE doctors. God will always be there for you. Never give up on your babies. Miracles always happen.

Dana - posted on 08/21/2012

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Iam 14 weeks pregnant will b 15 in 2 days and a week ago the doctors found cyst all over my baby's kidneys and said his brain doesn't look developed like parts are missing they recommend termination i have been so depressed every since this would of been my second child and I wanted him soo bad idk wat to do a part of me wants to fight for my baby and keep him and another part doesn't want him or myself to suffer they say if I have him he won't live outside of me my bf feels the same way as me a part of him wants to see if this could b our miracle baby and then another part of him wants to just listen to the doctors Iam only 22 and don't kno wat to do

Jade - posted on 08/21/2012

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Hi, I'm 20 years old and in 19 weeks +3 days pregnant. I have been told that my baby boy has diaphragramatic hernia on the left side (which means that there is a hole in the diaphragm which separates organs, the stomach has moved up and pushed the heart out of the way, which is crushing my babys lungs. Which will stop his lungs from growing. They say the survival rate is 30% which ink is quitw high, but what he will come out like or with is beyond there control. On top of this hernia, my baby has a leak in the left side of his heart, in the valve- so were the blood should be pumping up its failing and loosing blood.

I have been told I have 2 options, have an operation on the baby at 26 weeks pregnant while he is inside me, or end the pregnancy.

I am really confused and sad, there's at 30 % survival rate.. So should continue shouldn't I? Tho he may die as he is born stillborn, he may be premature, he needs operations which he may die during the doctors have made death a vital part to concider as they have not been to hopefull, and the chance he survives, he will have problems which could be all his life.

Do I continue with having my baby boy and leave it in 'gods' hands or do I end my babys suffering, my suffering, my partners suffering and my familys.. I have read loads of stories on hear & some people have been given worse percentages, and still continued.. I feel like I am giving up on my little boy.. I don't no why I have writted this, because I no no one can tell me what's best, but I would just appriciate advice from people who don't no me.. What would you do?


A very scared confused mummy to be. Jade.

Katryane - posted on 04/11/2012

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I had to take my 9 day old son off of life support he had been diagnosed with hypoplastic heart syndrome. We made the decision to have the Norwood procedure done. He fought like a little man could. The doctors told me that life support will not work if he has low blood pressure. On top of the fluid from surgery and blood transfusions every 10 minutes or less he had to be given more fluids. I had a conversation with my mom at the hospital and she said to me. I'm holding to him for my sake. On the day he passed my fam was gathered around to visit but he needed fluid every couple minutes my bf and I decided enough was enough and we chose against more fluid. The nurses came in turn off all 20 med drips and turned the alarms and machine off. We watched everything heart rate blood pressure go to 0. 1 min later he was gone. I held him and kissed him for hours and cried. I miss my boy so much... R. I. P my angel Isaac James Wright 2/22/12-3/2/12

Stephanie - posted on 04/09/2012

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I can't imagine how difficult that had to be for you. I agree with your grandma. My 6 year old son had viral myocarditis (a virus attacked his heart) he had a massive heart attack while in the ER and was on life support for two days until an EEG and two brain death tests revealed no brain activity. We pulled the plug on Jan 15, 2012 and he passed away. It was the most difficult thing I have ever done! My son was my life!! Brayden was the best son a mom could ask for. God is my strength to make it day to day. I am also 8 months pregnant with his sister Baylee.

MB - posted on 04/02/2012

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We had to terminate my pregnancy last week at barely 23 weeks pregnant. Our baby girl was diagnosed with Potter's Syndrome. It is very important for me that people understand this wasn't an abortion, it wasn't a miscarriage. It was a loss, a death. I gave birth to my child and I felt her little body move as she came out. I held her in my arms for her entire 90-minute life span. She was warm and beautiful and I take comfort in knowing she didn't suffer and she died nestled in my arms - the arms of the person who loved her most in the world. I like to think she could feel that love. This cannot be compared to early stage miscarriage or abortion. This is a baby we wanted, one we were waiting for and had made plans for. As I held her in my arms, I thought of all the plans I had had for her that would never be. It is a heart-breaking experience and right now, I can't even describe what I feel. I miss her every day and I wish I had just had more time with her. I wish she knew how much Mommy and Daddy loved her and wanted her. I tried to get the nurses to put her on life support but they insisted there was no chance for her survival. It's just so hard to believe because she was so beautiful. She looked just like me and even though she was only 1lb. 2 oz. and 10" long, she was so perfect. I can't believe this has happened. My husband and I are anxious to start trying to conceive again. This was our first child. We will try again and we will have a family someday but nothing will ever undo the hurt we feel right now. My heart aches and it just feels better to share this with women who have gone through the same thing. I am looking for some encouraging advice here, if there is any such thing. Is this pain going to get better? Does anyone else here know the grief of holding your child in your arms and having to say goodbye far too soon?

MB - posted on 03/28/2012

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My husband and I are 27-years-old and we just received the diagnosis that our baby has Potter's Syndrome. There has never been a successful case. Our baby girl is certainly going to pass on after birth. We have chosen to terminate the pregnancy at 23 weeks and put the baby out of suffering without compromising my health or future pregnancies. I hate that so many people judge, like we want this. Believe me, I wish there was another way but I know in my heart that not letting my child suffer needlessly is the right thing to do. I think God out people on this earth with the knowledge to come up with solutions to these problems. Who say termination isn't God's will? He has given us the chance to save our child from suffering. My whole body aches and my heart is literally broken in pieces. I have never faced such a terrible time in my life and it pains to know others can sit there and judge. They don't know my pain. I wish this hadn't happened to us but bad things happen to everyone. Everyone has their cross to bear. I just wish that on top of my pain and heartache (which will last a lifetime) I didn't have to hear about anyone telling me I did a cruel thing. I'm so glad I found this page. I need to know there are other people out there who understand what this feels like so I don't feel like we're alone. This was out first attempt at starting a family. I am broken. I wish only for another pregnancy that will turn out healthy so we can have a family. Termination is unlike abortion of an unwanted baby early on. It is horribly painful and you don't understand unless you've lived it. I just pray for the strength to get through the rest of this ordeal and move on with my life.

Tanya - posted on 03/08/2012

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On Sunday, November 13th, 2011, we put my son Atticus down for a nap. Not even an hour later, my husband went back to the bedroom to get something for me, and he found him not breathing. I started CPR, but he had no pulse and they didn't get one until he was in the emergency room. Following that, we had two heart-wrenching days at a Children's Hospital where he was never responsive.



Tuesday, November 15th, after his organs began to fail, we made the choice to take him off life support so that he could go peacefully. He passed shortly after 5 pm.



It's ruled as SIDS. He was nine days short of seven months old; our precious Easter baby.



I have since been told by other mothers, that in the same position, they wouldn't have taken their child off life support. I can't even begin to explain how much I wanted to scream at them for that.



It was such a difficult decision, and although I knew he was gone the Sunday before, I always thought I'd have my little boy back. Even as he took his last breath, I thought he would suddenly recover.

Mommy2G1B - posted on 03/05/2012

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My husband and i had to make a horrible decision to terminate or continue our pregnancy last July 2011. I went to my 18 week anatomy u/s and the ultrasound was taking longer than it had with my daughter and i was thinking maybe there is something wrong but brushed that thought off. But then the u/s tech said I need to go get the doctor i said does the doctor always check the baby and she said yes so i was somewhat reassured, then the doctor came in and i noticed she was paying close attention to one part of the body, while i did not know that part it did not look like they were happy with what they saw as they would soon tell my we were having a boy and the arteries that come out of his heart and curculate blood to his baby one was too big and they wanted me to go for further testing at tufts floating hospital in boston in 2 weeks. I went for the u/s at tufts and the doctor then told us that the pulminaryu artiery was too big and the aorta artery was too small. I said what does not mean and he would not give me answers he just told me that he wanted to me to come back at 20 weeks when they baby was bigger and he good get a better look at the heart. My husband and i went home and just cried the whole way home. My husband punched in our wall the first time i had ever seen him vandalis property. He was hurting so bad and so was. We already each had a girl and we were so happy when we found out we were having a boy at a early gender u/s at 15 weeks that we went out baby boy shopping. To then find out at 18 weeks that he was sick was so heart breaking. We went back for the 2nd ultrasound at tufts at 21 weeks and were told at the end after looking at no change in the size of the artiries that medical termination was recommended. I couldn't even speck i just stood up walked out of the office and feel to the floor and started balling my eyes out. The doctor told us that our son would need multiply surgies at birth to correct his heart and continual care throughout life. We had to think about how much we wanted him, but also about how we could emotionally and financially take care of a sick kid and how it would affect our girls lives one of which who lives in CA with her mom and costs my husband 5k a year or so to visit. I also could not have my 3 year old in the hospital all the time and have not life. Keeping him would have been selfish to him and to our family. He would have been in pain and struggled and i did not want my son to be in pain and our family probly would have fallen apart because of the stress and financial burden it would have caused us. I was in labor with him for 4 days 2 of which he was died inside me because they stuck a needle in his heart to stop it so he would not be born alive. We said goodbye to our son July 1st 2011. I am still having a hard time with it. We found out 1 month after we said goodbye to our son through amniocentisis that he had Digeorge syndrome and that he would have had a painful hard life. When i think about him I am able to find some piece knowing i did the right thing for our family and for Landon( our baby) because he would have only suffered if he had lived.



We just found out we are going on 6 weeks pregnant and i am scaried that something could go wrong and we could lose this baby too. We were told me are not carriers of the genetic disorder Digeorge Syndrome that it was a 1 in a million babies our diagnosed with this it is very rare.



Sorry for everyones lose i feel for all of you. I think we all made the right choice for a babies given the sitution that was given to us.

ANTANEQUA - posted on 02/21/2012

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OML!! THESE R SOME TOUCHING STORIES. WHEN I WAS 6MONTHS PREGNANT I WAS TOLD TO TERMINATE MY SON CAUSE OF HIS DISORDER HE HAS,EVERY ONE I TOLD ABOUT THE DISORDER SAID LISTEN TO YOUR DOCTOR HE KNOW WHAT THE urltasound says. BUT INSTEAD I LISTEN TO GOD, I PRAYED TO HIM N CRIED TO HIM. HE WONT PUT NOTHING ON U HE FEELS U CANT HANDLE. I WENT TO THE CHURCH HOUSE I WENT TO MY PATOR THE REV. AND MY GRANDMA AND I LET IT OUT. I CRIED SO HARD N SO MUCH IT TOOK A TOLL OUT OF ME. BUT TODAY IM TRUELY BLESSED MY SON IS 11 MONTHS N I THANK GOD HE IS ALIVE TODAY AND I PRAY HE MAKE'S IT TO C HIS 1ST BIRTHDAY AND MANY MANY MORE. THEY TOLD ME HE WASN'T GONNA MAKE IT, THAT HE WASN'T GONNA HAVE ALL HIS FINGER'S OR ALL HIS TOE'S OR THAT HIS FACE WASN'T GONNA LOOK NORMAL. THE DAVIL IS A LIER.. IM A CHILD OF GOD N I BELIVE N HIM. N I ALWAYS THINK WHAT IF I WAS TO HAD TERMINATED HIM AT THAT TIME. HOW WOULD I B TODAY? I HAVE 2 BOYS B4 THE 11MONTH OLD IM TELLIMG U ABOUT N THE OLDES ONE TOLD ME AT THE TIME, "HE WILL HELP ME" N THAT JUST MADE ME CRY EVEN MORE. GOD SENT THE SIGN THRU MY 7YR OLD FOR ME TO KEEP MY BABY N THATS WHAT I DID. I HAVE A FINE HEALHTY RED BONE I LOVE SO MUCH. N TO TOP IT OFF IM PREGNANT AGAIN WITH NUMBER 4. TRUST IN GOD HE WILL MAKE A WAY FOR ALL OF US TO MAKE THAT WONDERFUL FAMILY HE WANTS TO GIVE TO US.. MAY GOD B WITH N BLESS ALL

Stephanie - posted on 02/20/2012

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My husband and I had to make the decision to take my little angel baby off the machines that were keeping him alive. He was bleeding into his lungs and I didn't want to let him pass away without us being there so we signed the papers to let him go and my husband and I held him while he passed away. I still question the decision to take him off and wonder what would have been even though I know he wouldn't have lived much longer but I don't think I will ever not wonder. I wish everyday that he was still here and I now cherish every moment I have with my daughter even more because I didn't have that time with him.

Charmaine - posted on 02/08/2012

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That was very good advice I agree with your grandmother . We also had to make that decision for my little boy 3 years ago this Febraury and it is the hardest thing anyone ever has to do. You can't let others make you feel bad for what you know in your heart was the right decision.

[deleted account]

Hi I'm new here. I love what your grandmother said and that makes me feel a little bit better. I had to choose this heartbreaking decision and go back and forth with it. I miss my baby gir....I'm really trying to find a face to face support group. I am outside the philadelphia area. Any suggestions??? I am so sorry for all of you and will keep your angels in my prayers.

Angela - posted on 12/11/2011

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we terminated our pregnancy at almost a full 22 weeks. The amnio showed that Alivia was Triploidy. Triploidy is where the baby has 69 chromosomes instead of 46. It is incompatible with life. If they survive the pregnancy, they do no surgery on the baby and they never come home. Some woman can develop severe complications if they continue the pregnancy past 24 weeks. On July 8,2011 She was born. She took 3 breaths and she was gone.

Kerrin - posted on 09/29/2011

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My husband & I had circumstances in some way similar to Julie's.

We found out I was pregnant 6 months as well (in that whole time, I'd never given a positive test, even though I'd had 4 plus a blood test in that time). At our first scan, although we & our doc thought I was only 13 weeks, it turned out I was 33/34 weeks. The scan showed that our daughter had severe SB & hydrocephalus.

We were given two choices - I could be induced & our daughter born but she wouldn't survive (the hydrocephalus was severe enough it had destroyed all her brain tissue) & if she did, it would be painful for her. Or we could have a late term termination, stopping her heart before they induced me.

We were still getting used to the thought at the time that I was so far along & that there was no survival chance but we decided to have the termination. For us, although it broke our hearts & in some ways, having that procedure for me was worse than when I gave birth, both of us decided we couldn't take that chance that she would live for even just a minute & suffer. So we had the termination procedure, where they drained fluid as well so that I could give birth to her naturally & a few days later she arrived, stillborn.

Although I have days now when I do wonder what if (the same way I do whether we made the right choice not to see her but we were told that between the defects & fluid removal, it was not nice) I know in my heart that we made the right decision for us & our daughter. It gives me a little bit of comfort in all the pain knowing that she never suffered or was in pain.

Julie - posted on 08/30/2011

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I know this is a old post, but I really couldn't find any other forums online that were this well related to my situation. I just found out about a month ago that I was 6 months pregnant with an ectopic pregnancy. The doctor told me that even through I was 6 months along and the baby seemed to be healthy so far, that there was still a high chance that my baby wouldn't make it full term. Unlike most ectopic pregnancies my baby wasn't located in my tubes, The baby was located just outside of my uterin wall. The doctor gave me an option to either terminate my pregnancy early by injecting a needle into the baby's heart or to wait the pregnancy out and just see how it went. Well I already have one child and me and my husband had been trying to get pregnant for sometime, but because my pregnancy was unknown I was not prepared for this at all. I tossed up the choices whether to continue my pregnancy knowing my baby may not live or to terminate before I became to attached to the idea. Lets just say it was the hardest choice I've ever had to make. I chose to terminate the pregnancy, I can't say I regret my choice because I will never know what might have happened, But I can say the pain is just as real as if I had gone full term knowing I was pregnant. I've been trying so hard to continue on with my life for my daughter whos now almost 4, but its not easy when at times I do question my decision. Sometimes I just wish maybe I had thought about it alittle bit more.

Andrea - posted on 07/01/2011

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we had to take our little boy off of life support at 7 months old. his gestational age was 3 months old. he was born at 24 weeks. im thankful for the time we had but it doesnt help with the pain i go through everyday. holding him while he is struggling to breath is horrible. he was our first child and so far no luck on having another one yet.

Alison - posted on 06/08/2011

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awww sorry! we had our daughter cremated also,i feel our lil girl would of lived if she could of been put on tubes but her lil throat was too small,only been a month and almost 2 weeks,i would love to get pregnant again this year since the doc said since i didnt go full term i can try in 3-4 months and it will be safe but idk if its wrong of me to want to get pregnant again so fast

Lizbeth - posted on 06/08/2011

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i had my son at 5 1/2 months due to severe preeclampsia baby was born almost 5 months early...he was soo perfect so complete...but he had severe bain bleed, a pda in his heart...and a rupture in his intestines...the doctor gave me the same choise to take him off of life suport or he would have an uncertain childhood they told me his chance of surviving normally was less than 10% he just passed away may 16 2011 he lives fo one month and two days....the day we decided on taking him off of life support he passed away on his own....its a very very sad thing to go through i understand u.....we got him creamted..hes home with mommy n daddy now....i think about him everyday.....hes in my heart forever..

Alison - posted on 06/01/2011

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omg that is bullshit wtf is the docs prob tellin u to do that just cuz u have 3 kids who gives a crap,def get a new doc

Alison - posted on 06/01/2011

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i didnt have to remove our daughter from life support but it hurt that she was too small to even be put on any tubes to live,she was born 4 months early this was april of this year our beautiful baby didnt wanna leave us and was such a fighter lived for 6 hours,9mins when they said she wouldnt at all and if so onlyfor an hour,once they said she passed i lost it ,i miss her more than anything,some days i feel i cant take it anymore,i found out at my 2 week d&c checkup that the cord and everything was fully infected,which idk if it was from gettin a polyp removed at 10 weeks which let an infection in or bein 6cm dialated in the hospital for a week tryin to save her,keep her in the womb for atleast 4more weeks to give her a chance,but there was nothin else i could do we had to go ahead and induce since my water was leakin and she was feet down in my vagina but before the meds even kicked in i went into full blown labor on my own,had her 5 mins later i wish more than anything that she was still growin inside my tummy only if the ob didnt remove my polyp i think thats why i went into preterm labor

Hannah - posted on 06/01/2011

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I was given the option to terminate at my 20 week anatomy scan. They recognized it when they noticed there was no fluid. My baby girl, Sadie Mae, was diagnosed with bilateral renal agensis, missing kidneys. The diagnosis is 100% fatal. However, there is no way I could ever abort her. She was my daughter, and I wanted to give her a chance to live. And I wanted to give God a chance to work. I was told she would never grow, and would probably die inside the womb. She did grow, and she lived through birth! They told me she would be small, not even 5 lbs. She weighed 5lbs 8oz! She was born on January 18, 2011. And she was absolutely beautiful. She never cried, and her heart only beat for a few minutes after birth, but I enjoyed every second I got with her. I am so glad I didn't take the doctor's advice. I do not regret my decision at all. You can read more about my pregnancy, and my time with my daughter on my blog: www.mommyofsadiemae.blogspot.com

Micha - posted on 05/29/2011

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Um, WHAT? Whose fucking business is it that you have 3 children and you are pregnant with your fourth! If it were me, I'd LEAVE that doctor!

Pushpa - posted on 05/29/2011

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I'm going on a hard phase of my life, i'm 11 weeks pregnent and doc have asked me to terminate this since I already have 3 children

Toni - posted on 05/24/2011

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That quote made me cry. I had to make the same choice as you my baby had that plus other problems part of her spine missing, heart problems and her stomach on the outside of her body which gave her a 1% chance and only last night I was talking to my mother about this (crying more like it) even after 2 years. I made the choice to let her go because of my other 2 children I know that it was the right way to go but to this day I still have second thought about doing it.

Micha - posted on 05/22/2011

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I was nearly 6 months pregnant when my husband and I decided to terminate our pregnancy. We went to the fetal anatomy ultrasound appointment at 22 weeks and we found out he had Multicystic Dysplastic Kidney Disease. His condition most closely resembled Potter's Syndrome, but it varied from it in places. The specialist looked at me and my husband and told us that with the severity of our son's condition, it was 100% terminal. He told us that there was a slim chance of him making it through the entire pregnancy and that if he did, there was a huge chance of him passing away during labor. If he would have made it through that, he would have suffocated because his lungs wouldn't grow because of the disease.

My gynecologist is located at a Catholic hospital, so they don't perform D&Cs there. After we made the decision to terminate, she told me not to look at what I'm doing as getting an abortion, but as saving my son from Possibly experiencing one of the worst deaths imaginable after only living for a few brief minutes.

I know that I made the right decision not only for my son, but for myself and my entire family, but that doesn't stop me from feeling like I killed my baby.

Brandy - posted on 05/15/2011

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I cant imagine having to make that choice. I believe you are very brave. Unless you have had to face that decision NO ONE has any right to judge you. It sounds like Grandma is a smart woman.

Grace - posted on 05/13/2011

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Thank you Chrystal. I really like what your Grandma said. I put it on my son's memorial page so I can read it when I need a gentle reminder that God does stand behind my decision. We terminated our pregnancy as we were told Tristan would not live beyond a year and most likely would never see the outside of the hospital. I couldn't put him through that. I couldn't give him a life full of procedures and pain only to lose him in the end anyway. I did it with love.

Reg - posted on 05/08/2011

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Johanne,
Thank you so much for sharing your grandmother's wisdom. My same decision about my son Angel was heartwrenching in that he was my only pregnancy, due to infertility. Never was a child more wanted... but with my husband having been born with spina bifida, we could not care for a child who had a 95% chance of having to be institutionalized, if he even lived with Down syndrome.

This Mother's Day is particularly hard in that no one seems to even remember that 11 years ago I became a mourning mother. We chose to deliver Angel and he quietly died in my arms at 21 weeks, too early for survival.
My doctor told me this was the most caring way to let him go, and even canceled her own plans to stay with me in the hospital that weekend. I wanted to die with him. And today, that feeling has returned in that even my husband has chosen to ignore Angel's having been born at all.

I know I made the right choice in having let him stay in God's arms. I named him Angel as he was born on Easter morning and I feel like his soul never quite came down from heaven. I don't know why I feel like this, but I do.

Still, it took years to come to terms with the decision which was heavily influenced by the fact that my husband couldn't handle having to daily relive his issues about his own birth defect. Hubby says there were too many days he wished he'd never been born, as he has had 54 surgeries in his 50 years. (But he only went on disability 2 years ago as he had a great career til his body just gave out.)

While my husband was a miracle child in his survival, I wish we could have had faith in having a miracle save our child. But we already face the harsh reality of a major birth defect daily and had to make the hard choice in order to save our child from pain and suffering.

Even if Angel has been born highly functioning, he wouldn't have understood why he was treated so differently. But since he was born with a drooping mouth and tongue, I know that he most likely would not have been able to swallow and had other issues that this kind of lack of brain development that comes with Downs. So I am trying to feel comforted by the knowledge that he remains in God's loving arms. Yet my heart aches.

I would like to wish all Mothers who have lost their only child or who have had to terminate a pregnancy a loving, knowing, and understanding Mother's Day.

Mandy - posted on 04/21/2009

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Hi all

We also had to turn of lifesupport after 6days in icu. My son was 9 months old. I remember that day ass if it was yesterday, 8 years after. They brought in a dr from Pretoria to do all sorts of test and brain scans after 4 scans they told me that Shaun was brain dead...... The hardest thing I had to hear. Couldnt breath on his own nothing. Half an hour later we made the decision to turn of life support. The shut down all the masjiens and gave him to me. This was the first tine i got to hold him in 6 days. I sat rocked him and sang him his fafourite lalaby till he was gone. And then i just sat there with my baby for such a long time crying and thanking him for the best 9 months in my live.

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Quoting Chrystal:

For those who have had to terminate a pregnancy or remove life support

Almost four years ago I had to choose to terminate or continue my pregnancy with a child who would most likely not live.
My daughter, Kaitlyn, had a birth defect where the back portion of the skull didn't fully develop. This caused a large portion of her brain to grow outside her skull. We were told that she only had a 3% chance of survival and that if she lived the best case scenario was that should would be able to breath and swallow on her own. This was only a 1% chance.
If we chose to continue the pregnancy they would deliver her C section and take a portion of my hip to form the back of her skull. They would have to remove all or most of the brain portion that was outside of the skull. This would eliminate over half of her brain mass.
We were also told that she would be just as aware as anyother person as the frontal portion of her brain was fully intact. This was not info they offered but was an answer to my question.
We could also choose to terminate the pregnancy. If we did this they would place a needle into her heart and inject a medication that would instantly stop her heart.
We chose to let our daughter go knowing only the wamth and comfort of my womb.
My sister-in-law told me that I needed to give God the time to heal my daughter and that by letting her go I had not giving him this time.
Since this was all a converstion two years after the fact it made me again worry about the choice I had made to stop my child from a life of pain and suffering.
When I called my Grandma she told me something that was very helpful to me.
"In order for there to be good in the world there is also evil. God is not responsible for all the pain and suffering in our lives. Sometimes his gift to us is the strength to make the awful choice to send our child to be forever in his care."
I hope this helps others who have made the difficult decission to let go.


Wow.  My son had a neural tube defect with the same results affecting his brain.  However when I found out my I was 6 months along and the options they gave me were; give birth now or wait out the next 3 months feeling every movement when I knew he would almost certainly die. I gave birth 2 weeks later and have questioned that decision ever since.  I have always been too ashamed to tell anyone other than my husband how I feel.  Thank you for sharing your grandmothers wisdom! 

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