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.

84 Comments

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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.

Emily - posted on 04/20/2009

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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! 

Jeni - posted on 04/19/2009

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All your stories break my heart. Thank you for sharing them.
My story doesn't "fit" here; my daughter had a cord accident and was born still, not by any choice of my own...but I think you are brave mothers for making such difficult choices--and courageous to live with those choices everyday! I hope you can all be filled with peace.

Jeni

Kate - posted on 04/19/2009

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I can easily traumatise myself by taking myself back to the hospital family room where they told us our 15 day old daughter had been without oxygen to her brain for too long for her to survive. We were advised to allow the staff to switch off the machines that were keeping her "alive" - that was over 4 years ago. In some ways I survive by trying very hard not to think about it, and luckily I already had one daughter, and have had two others since. I plagued myself for ages afterwards - had I done the right thing? Did I give up on Gabby too early? Yes, you read of children in comas where all hope seems to have gone and yet, by some miracle, they survive with a decent quality of life. But I know in my heart of hearts this would not have been the case for Gabby. She had contracted a nasty lung infection and her little body wasn't strong enough to fight off the virus - and slowly but surely her body shut down. I wondered why staff hadn't approached us re organ donation, but realise that not only would I not have been particulalry receptive to this (despite championing organ donation, the idea of anyone cutting open my precious baby girl was completely abhorent to me. I realise this is a rediculous notion - luckily I have my faith, and was able to recognise when I visited her in the chaple of rest that it wasn't my Gabby I was looking at, but only the shell where her soul used to reside. If that makes any sense!), but also there was unlikely to be any organs worth passing on.

We opted to have Gabby cremated as we knew we would be moving out of the area we were living in. Her ashes were scattered on my husband's father's grave, and a little urn with her name and dates of birth and death is placed on there. We visit when we can, and it still hurts, even though I now have 3 other beautiful daughters.

I don't believe God blames us for taking the decision to let her go into his care. I will never understand why he felt the need to take her from us, but I do know it changed our lives dramatically - we now realise how precious life is and live each moment to the full (or at least, we try to!) We also have greater empathy and compassion for those facing similar circumstances, and with God's grace we have been able to help other couples going through their agonies of still-birth or the loss of a child.

I still miss Gabby. I always will. But we will never forget, and we have the hope that one day, in Heaven, we will be together again.

With love to you all.

Dori - posted on 04/19/2009

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My Blake was born with several heart defects. He ddi great for almost two years. But in was in the hospital this past Dec and Jan. He gto sepsis twice and the second time his body just couldn't fight it off. We choose to let him go on Jan. 21. We took him off the vent and he died in my arms in less than a minute. We got the autopsy report with no reasons of what was going on with him. For two years I did my best to keep him healthy. Now my word is so empty with out him. Thankfully I had my daughter in Jan 08 but she misses her brother just like the rest of us.

[deleted account]

As I sit here reading all your responses my own come into play. I didnt terminate my pregnancy My precsious son was born on March 15,1997.. he was born way to early, and he started to go into shock he couldnt not breathe on his own he was on life support.. Easter March 31, 1997 at 16 days old my husband and I had to make the most hardest decsion either one of us ever had to make.and that was to take our first son off life support because all he was suffering. There are days I wonder if I ddin the right thing.. i wonder all the what if.. what idf he would of been okay. what if he didnt have any problems..

But now i know that I did the best thing I could of evefr done for my child was to let him go peacefully..

Thank you for this roup it has made me understand alot.. it has taken 12 years but now I know I made the right choice.

Sharissa - posted on 04/18/2009

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pregnsnt with my second daughter i had started to leak fluid at 18weeks, we went to the hospital and after a few tests and an ultrasound they sent me home, they had said it was probably a urine infection and that it was just a gush of urine. i did have a weak bladder after my first daughter, who was only 12 months at the time, so i believed them after all they rthe professionals!!

that night in bed i continued to lose fluid but just kept changing my pants and tried to ingore it.

due to 'industrial action' at our local hospital my routine 19 week scan had been cancelled and re booked for 21 weeks, i was quite disappointed at this as my partner had schedualed time off work to attend and i stil had doubt about my babies health.

as soon as the lady started the scan i knew something ws wrong i couldnt see the baby properly but as she didnt say anything nor did i. after about 10 mind of my rolling from side to side to get a good veiw she turned the screen offf and told us there was no fluid around our bub and to wait while she consulted the senior dr. She told us she could be a few minutes and to try to organise somebody to care for our12month old who was with us, fortunatly my mother in law works in the pharmacy at the hospital.

i stayed on in the room while my partner took our daughter down stairs to his mum, i remember thinking, i wil need to stay in hospital, to prevent infection until its safe to deliver. how wrong i was!!

not long after luke had left i the lady and a man returned, in a matter of fact way her told me there was no fluid around my bub and that her head hadnt formed properly so she would die.

i was so angry that he couldnt have waited until my partner returned to tel me this.

we were sent up to the birthing suite and were given our 'options' which were inducing the pregnancy or waiting to go into labour naturally.

i dont remember much of the conversation i just remeber being told my baby would be deformed and i probably wouldnt want to see her. then we left the hospital with an appoint for 9 am the next morning to be induced, i dont actually remember making that decision but they r doctors and know best so i think i was in shock and just going along with wat they said.

i was induced at about 10am on the 21st dec, contractions started almost straight away, although i pretnded they didnt and didnt tell anybody, even my partner until late afternoon, they got painful about 10pm but i didnt want medication, i felt like i deserved the pain for not keeping my baby healthy! it was a very different pain to my first, and i knew she was ready but i wasnt!

my labour stopped just before midnight and wen the midwife came to check she said my baby was in the birthing canal and i just needed to get her a little help.

after 3 or 4 small pushes Poppy Vanessa was born at 12:18am 22nd december 2007.

the midwife took her straight away and dressed her, she didnt have a heartbeat and never took abreath.

we did meet her and she was beautiful just like her big sister, i tried to get some sleep but i spend the night just waiting for her to cry, just waiting for her to move. our families met her in the morning, and we introduced big sister, she was a bit young at the time to understand but now she talks about 'my sister asleep in the sky', and wen she sees a butterfly she calls it poppy.

i think i might have gotten a bit carried away with my story, sorry ladies, i just started and i couldnt stop writting.

i think alot about inducing the laour and wonder if it was the right thing to do, but Poppy wouldnt have survived either way and i know she is not in any pain where she is now, watching over us.

xoxo

Denise - posted on 04/18/2009

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I am so very sorry for your loss.. I had to turn off life support for my 7 yr old son Dylan. It was a choice that haunts me daily, Did I do the right thing? in my head I know I did but my heart says I didn't. All the what ifs haunt me. My son developed encephalitis very very quickly, he was kept in a coma and paralyized for 15 days in ICU, he was weaned off most meds and the day before he passed he was awake but couldn't talk due to the vent, we thought he was on the road to recovery but then that night he had several strokes and a right brain herniation and was declared brain dead.( I hate that term) we chose to stop everything they were doing because we were told his brain was never going to "awaken" again. I still wonder everday of my life if he could of gotten better, you hear about it all the time, and it scares me to think I may have made the wrong decision.

Jeanice - posted on 04/15/2009

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Thank you for this Chrystal. I think it is beautiful that you made this most difficult choice wanting to keep your baby comfortable and warm instead of putting her through so much trauma.  God gave us medicine so we can make wise choices which I beleive you have done.



Best, Jeanice

Kim - posted on 04/14/2009

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My son went down for a nap on Dec 2nd 2007 when my husband went to check on him he found him with his trach dislodged and he was blue. We rushed in to our local hospital and then they flew him to a childrens hospital, after 4 hours of testing we knew he was gone, we tried to keep him alive long enough to donate his organs but as his heart failed and the meds caused more and more distress I finally told the Dr's to stop, they disconnected him from all machines and I held him in my arms and sang to him as he passed away. this is a choice no parent should ever have to make, and it haunts me to this day. I still have nightmares about this and relive it everyday. My son was my life and he had come so far, his trach was due to be removed in less than a month and he was starting to talk, I miss him everyday. I have 7 other children who keep me going but he will be missed by all of us forever.

Dylann - posted on 04/14/2009

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My husband had to make the hardest decision any parent every has to make... Our precious Caleb was so sick and suffering so much.  The doctors told us there was nothing more they could do for him.  He was septic and his poor little body couldn't fight off the infection... He was born with a Disease called Hirschsprung's Disease.  The nerves in his intestines didn't form, so he couldn't go to the bathroom.  After 2 surgeries, every kind of antibiotic known to man and more praying than I think anyone has ever done in their life, we had to take Caleb off life support.  He died peacefully in my arms with my husband there with us... I couldn't imagine going through all this without my older son, Ethan who is 3. 

Kerri - posted on 03/24/2009

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I have older son then 6 girls when we found out I was having another baby we all hopped for a boy.Then it all started at the results of the 20 week ultrasound. Got told there was trouble with his heart and the cord. Went for another ultrasound in Adelaide we were told that 2 veins going to his heart were the wrong way around, his kidneys were too small, his eyes were too small, his chin was receeded, his fingers & toes only opened half way & something at the back of his brain was too small. We went back to Adelaide on Monday for an amneo. Got the results on the Thursday that he had Trisomy 13 and that if he survived he would only live 2 months at the most and that if we decided to have him that if he died inside and I didn’t know that I could die too. So we made the decision to do a genetic termination. We had to be in Adelaide at the WCH by 10am to start. Dylan was born at 9.40pm Friday 11th July Asleep. He looked so peaceful .It was the hardest decission we have ever made I can only hope that none of our Children ever have to make it.It just seemed so wrong at the time but now we know it was the right thing to to do.

Paula - posted on 03/20/2009

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HI to you all.



I sit and read all your stories....and there is such sadness. For me I did not terminate but I had to stop the resecitation.  My Narmeen was 27 days old and from birth had difficulties and had never came home from the hospital.  On that last day she was to have a CT scan cause she was having issues oxygenating her blood and so I was told they needed to entubate her for the test.  as the day progressed and I waited for her to leave the room for the test....little did I know she was in distress and entubating her was no longer for the test but to save her life.  Thay were not able to entubate her and had to perform a tracheotomy.  I was told to come see her as they couldn't do anything else to save her.  This was the worst conversation I ever had.  I saw her on the table being ventilated by a nurse, swollen from the emergency drugs and bruised from chest compressions.  I held her in my arms and eventually told the nurse to stop ventilating....she discontected the trach attachment from the embu bag and they let her rock in my arms....they shut all the machines down so I could focus on her.  She died in my arms and I held her for hours. This was Nov 16th, 08.  To this day we still await the results from the autopsy....and we don't know what happened.



In a way it was not my decision and she would not have survived if I had told them to continue....but letting her go...telling them to stop....will stay with me forever.



verbally saying....its ok you can go Narmeen....its ok mommy is here....you can go.



I was with her in the end and watched her leave ......



I hope someday I have the courage to beleive that god took her to end her suffering.

Dawn - posted on 03/13/2009

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After 2 years of trying to get pregnant (including a year of infertility treatments), I finally conceived through IVF. At 17 weeks it was discovered that I had absolutely no amniotic fluid (there was plenty at 12 weeks) and there were "fetal abnormalities." The doctor told me that a few things could happen: I could miscarry at some point in the pregnancy, I could carry to full term and deliver, but my baby had a 0% chance of surviving more than a few minutes, or I could end the pregnancy. It was the hardest decision my husband and I have ever had to make, but at exactly 18 weeks I had a D&E. My husband and I went to counceling and to a support group and both really helped us get through the pain of losing our son, Logan. I now have an 8 week old perfect and healthy baby boy and while I know he'll never replace the son we lost, it does help ease the pain. I'm also certain as sure as I sit here typing this that our angel sent us our baby boy and watches over him every day.

Johanne - posted on 03/12/2009

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"Without even taking a breath, he has changed my life in so many ways". Beautifully put Karah. I chose to end my pregnancy at 20 weeks almost 2 years ago. Our little girl Melek taught me so much and as you said without even taking a breath. I now have a 5 month old boy and it is a pleasure being his Mum. I look forward to sharing every day with him.

Karah - posted on 03/06/2009

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I chose to end my pregnancy at 23 weeks due to a severe case of hydrocephalus. It was over 2 years ago I made this choice. Its still a struggle everyday, but I know that I put my personal feelings aside and did what I knew was best for my son. He would have had to be hooked up to machines for everything if he even made it through the trama of labor. I would have never been able to bring him home, he would have never known me as"mommy"...




I honestly believe that everything happens for a reason and to me, if it werent for my son, I dont know if Id even be here. At the time I was 18 and in a horrible relationship with his father. After I ended the pregnancy, within a month, his father and had our end to the toxic relationship we had carried on for 2 years.



Now I am engaged to a VERY good man. Im in a good place in my life and I have a 3 month old daughter along with his 6 year old son.  Without even taking a breath, he has changed my life in so many ways.

Amber - posted on 03/06/2009

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My husband and I made the most difficult decision of our lives to terminate our first pregnancy in August 2008 when I was 13 weeks.  Our baby had cystic hygroma covering her entire body and was the largest cystic hygroma the doctor had ever seen.  She had heart abnormalities and her NT measurment was 2.0.   We recieved the test results after an agonizing month or so after the termination.  It turns out she had Turner's Syndrome (which is how we found out she was a girl).  The doctor said that the pregnancy would most likely have terminated on its own, and if I did go to full term the baby would have died after birth.   We had a memorial service for her with family and planted a bush in her honor.  We also are planting a dogwood tree for her this spring. 



I am now 19 weeks pregnant with a baby boy and everything is exactly as it should be!  I still think of our first baby often, my due date was Feb.7 2009.  He will never "replace" our first child, but will only be our first baby who survived and was born healthy.  I do wonder what to do with the few things we had for our girl such as a blanket.  I am thinking of sewing a little something onto it and letting our boy use it with full knowledge that it was from our first baby we lost before him.

Chrystal - posted on 03/04/2009

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I know what you mean about thinking that you should have another little one running around. My best friend and I were due with in weeks of each other both with our first girls. We are still best friends and she lives just two doors down. It has gotten easier but there are still days when I look at her little girl and think that I should have one the same age.

Crystal - posted on 03/04/2009

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My husband and I had to make the horrible decision to end a pregnancy at 23 weeks due to a fatal kidney disease. We found out at 20 weeks that we are carriers of a pretty bad disease called Autosomal recessive polycystic kidney disease. We have a 25% chance of this happening with every pregnancy. We now have to do a CVS with any pregnancy we have in the future. We have an 8 month old now that does not have the disease.
Ending our pregnancy with Nathan was the hardest thing I have ever had to do in my life. He had a 5% chance of surviving the rest of the pregnancy, if he did, it was likely he would die hours after birth. I chose to deliver him, my husband, our parents and a few of our closets friends were all there and got to share in his short time here.
We all were faced with impossible decisions; decisions that some wouldn't have been strong enough to make it through. I think about Nathan every day, I think about how I should have had an almost 3 year old running around.

Toni - posted on 03/04/2009

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Hi Im new to circle of moms.  I had to make the worse decision ever.  I went to my 12 week scan a bit late at 15 weeks and was told that I wasnt that late and was only 10 weeks and told to come back in 2 weeks which I knew was wrong because I had bloods done  we asked if everything was ok and told yes. Went back 2 weeks later with my sister and her new baby cause husband had to work and been told that everything was ok I wasnt really worried. As I lay there I was told with my sister still in the room the my baby had no skull no spine and a tumor where the stomach was on the outside.  My sister left and rang my husband to get him. We went to the Doctors the next day and was told had a 0 percent chance of survival if I carried on and that the baby had stopped growing because of where I live we had to travel to another Doctor who told us the same we decided to terminate because we have 2 children and that didnt seem fair to them to get excited about the baby we terminated at 19 weeks and had to go through the labour 2 weeks later we found out the it was a wee girl who had everything they was and also heart and lung problems she was born 12 years to the day of her great granddads death 13.12.08

Johanne - posted on 03/04/2009

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We made the heart renching decision to terminate our pregnancy at 20 weeks. Our little girl had downsyndrome. We did all the tests and our worst fears came true. We had to make the decision that no parent wants to make. After a lot of pain we decided it would be best to give her her angel wings. I had to deliver our baby as she was almost 20 weeks. That was painful and the worst thing I have ever had to go through. Contractions started pretty much straight away once they gave me the medicine, but after an hour or two everything stopped all of a sudden.....this was the time that I no longer felt her flutters or felt her tiny little kicks. She was gone. It was another 2 days and several failed attempts to get my contractions to start again that they decided to send me to theatre to have her removed from my womb. She just didn't want to let go and my body wasn't ready to let her go. She was perfect, just tiny......everything was there, she was perfect. The decision we made was the right one for our family, but I will never forgive myself for making it. Our little girl - Melek (meaning little angel) sent to God almost 2 years ago (born sleeping 19th April 2007).

Debbie - posted on 03/04/2009

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i had to terminate my pregnancy at only8 weeks, i wasnt far gone but i was my baby .my boyfriend pursuaded me we were too old at 42 .my 3 children were grown ,he has 2 children who i dont see and as we are renting privately we couldnt afford it.i feel it was the right thing to do but it still hurts..it wasnt fair to have a child with him as he has a drink problem which he wont admit to ,so dealing with his problems and arguing over his kids plus my homones all over the place i was talked into it . theres not one day i dont think of it and i have to stop myself from cryiny

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