Wednesday, 25 May 2011

Sharing my Story

I wrote the blog with every intention of sharing it and with the hope of helping others.  When it came to the crunch, the thought of sharing my inner most thoughts and feelings terrified me.  I deliberated for weeks about sharing it, should I, shouldn't I?  I shared it with a few close friends and the response was really positive but I was still unsure.  Then my friend sent me this message and the minute I read it, I decided I had to share it..... 5 minutes later, I shared the blog on Facebook.....

"Nicola I have just read the entire blog and it has to be one of the most moving accounts of motherhood I have read. This is the kind thing that will help so many people who are unfortunate to have to face every parents nightmare ..However the entire thread oozes positivity and even hope . People are often pressured at times like this to make decisions they would not normally have made termination ..your decision to give Benjamin an identity by bringing him into the world and allowing him to feel your love has to be the most beautiful acts of love you could hope to perform on this earth ..Well done nicola for posting this ..Do not be nervous ..think of the people like yourselves who will grasp at the at the information you have posted and hopefully will derive comfort from it x"

Since taking the plunge and sharing my story 2 months ago, I've had an amazing 7304 hits!  The response has been overwhelming.  I've received emails of support from complete strangers from all over the world, all of which have affirmed that sharing Benjamin's story was absolutely the right thing to do.  I have received some emails with very sad stories and others of hope.  One woman shared her experience with me:

"What a touching story. Reading it broke my heart and brought back a lot of memories for me. When I went for my 10 week dating scan with my first child we were given the news that they thought that our baby had a major heart defect, a major bowel defect and downs syndrome and I was advised to terminate the pregnancy by the doctors right up to 22 weeks when I then knew that I was carrying a son and could feel him moving and growing inside me. I knew that in my heart, I just couldn't do it so I continued with the pregnancy and knew that no matter what, I would love my baby. He arrived exactly right on his due date and was perfect. No downs syndrome, no bowel or heart problems. Every birthday I sit and look at him and have a little cry that he might never had been born had I listened to the doctors. I am so glad that I followed my instincts. No one knows what they will do when faced with such a huge decision to make - you are a very strong woman x"

Many people have emailed me to simply say that reading Benjamin's story has made them appreciate their own children more.  To me, that in itself makes the blog a success.  I'd like to thank everyone for their support, for those that have messaged me and those that have shared the blog with their friends.  Every single message means something to me.  I've tried to reply to everyone but fear that the odd one or two may have slipped through and for that, I apologize.

And of course, for those of you who have taken the time to read it and share in Benjamin's short life...... thank you from the bottom of my heart.

Nicola xxx


  1. Benjamin is so gorgeous in your photos. He looks like he is staring up at you and learning every feature. I think it is wonderful you carried him to term and gave him those extra months of life, and allowed him a brief glimpse at his loving family and world.

  2. Dear Nicola
    I have just finished reading your blog, I saw some tweets you had RT on twitter and had a look at your page and I have been so moved by what you have written I had to send you this message.
    I think you are a truly amazing woman and have the most wonderful outlook on turning a negative in to a positive, I lost my younger Sister to Leukaemia 23 years ago when she was just 2 years old I remember those two years we had like it was yesterday, only being 7 myself I have treasured them all these years. My Mum has always been so strong and done the best she could for my sister which meant her own grief being put aside but now I have my own two sons I’m amazed by her strength and how she coped I learnt when my dad died last May that it’s your children that help you through those dark days and being strong for them helps you hold your head high and make the most of what you have.
    Your decision to have your beautiful Benjamin and to give him his own identity took pure strength and courage to be able to make those memories for you to treasure and hold dear in your heart.
    I believe every child deserves the chance to make a difference in someone's life if only for a few hours, days or years and yours and Benjamin story from what I have read on here and twitter has done that. Benjamin will always be a very special little boy. I send my love and best wishes to you and your amazing family
    Love Carla xXx

  3. Amazing, moving, inspirational story Nicola.
    (Just thought I'd say I tried to Share it on twitter using the link, but it didn't work.)
    Have shared it on Facebook, I agree with your friend's advice; I'm so glad you've shared it as I'm sure it will help other parents in this situation and show them that they shouldn't feel pressured to have terminations, but give their babies a chance, an identity, and hopefully time with their families and to know and feel love.

  4. Dear Nicola
    I have just read your Blog and have also had a problem with a translocation of Chromosomes 8 & 13
    My mother while pregnant with my younger sister, as an 'old mother' (36 back in 1987) was given an amnio where it was discovered that the baby and my mother carried a balanced translocation with the chromosomes 8;13, as luck would have it that meant that while a piece of chromosome 8 was missing it had attached itself to 13 so basically all the 'pieces were there just in the wrong order'.
    I was also tested and carried the same balanced translocation so it was decided that as i and my mother were fine, then there should be no reason why this should be any different and they were right.
    If the translocation had been 'in-balanced' then we were told that either 3 things would happen, the baby would be miscarried early, baby would miscarry in the later stages of pregnancy or the baby if born would have such severe disabilities both physically & mentally that they would not survive more than hours (my grandmother had a baby that was still born and the doctors would not let her see him, we now know why)
    Jump forward 15 years and i fell pregnant. As i have the translocation i made the choice at 10 wks to have a CVS (takes blood from the placenta)to test for the translocation. Although it was only 3 days wait for the results it felt like a life time. I recieved the call to say my baby had the translocation but it was balanced so everything should be fine & it was. My baby girl was born perfect.
    A year later i fell pregnant again and because of the translocation had a scan at 6wks were it was found that there was no heartbeat. I was told to come back in 2wks which was hell. As expected there was no change & i miscarried soon after, tests showed this baby had the translocation 8;13 but it was NOT balanced. In total this happened 4 times & nearly destroyed me, i actually felt as if someone had put their hand inside my heart and tore it out. People said i was 'lucky' that it had happened so early. What is 'lucky' about losing a longed for baby no matter how early and every where i went all i saw was pregnant women which made me want to scream why me.
    Each scan brought the same result, no heartbeat & finally at my 5th (& final i decided) pregnancy i went for the scan myself as i told my partner it would be the same result. WRONG! There on the scan was my beautiful tiny little baby WITH a heartbeat :-) But again the test for the translocation was done & the wait again was horrible, my baby could have a balanced translocation or worse an in-balanced so that would mean i would lose him later or at birth.
    The call came & what she said did not register for what felt like mins but was secs, my baby had NO translocation. 9mths later my son was born weighing 9lb 13oz.
    While i know this is nowhere near as hard as what you went through, i like you even though i lost my 4 babies before 10 wks class my 2 children i have now as 2 of 6 & believe that i will meet them one day they just weren't ready for this earth yet.
    To anybody reading this, i'm sorry to prattle on but having chromosome problems does not mean that it has to end badly, it was 50-50 with me and i got lucky twice but i like Nicola would have carried on & given my baby a chance to be part of this world for whatever little time that was meant to be.
    Sorry to go on but this is the first time in 5 yrs since this happened (4 misscariages in 14mths) that i've been able to get this out.
    Thank you Nicola for telling your story of your beautiful son & giving me the courage to finally let out some of the pain that will always be within me as i will never forget my lost babies xx

  5. I came across this by pure accident. My original thought was to immediately exit your page, but something lead me to want to read your story. I'm glad I did. I am more than sure that you already know how truly blessed you are to be able to hold your son in your arms. I was also told that my Son wouldn't make it. And like you, I also carried him full term, even after knowing about the supposed outcome. But unlike your beautiful ending, mine wasn't so great. My Son died minutes before delivery, and I'm still trying to cope with his passing. I know that I had months to take it all in and "come to terms" with it, but I think that nothing can prepare you for the impending lose of a child. There's always that ray of hope willing your heart to believe that miracles do happen. But in the end, I was left hopeless, childless and with absolutely no support from anyone around me. I was only 17, and I had no clue of how to even begin to heal from this. I didn't want to be here. The pain was so great and I was so alone. I don't believe that old saying that "time heals all wounds". I do, however, believe that time can help you to better analyze things, and help you to at least cope with the loss. I'm so happy for you. I hope the best for your family.

  6. Wow, i came across this site by chance and i was going to just exit it but something made me read it. I dont know why as i have two beautiful children and have never suffered a loose like this. I do have two friends who have both suffered a lose, one to twins when she was 6 months pregnant and 1 whose baby died just before giving birth and i cant even begin to imagine what they went through. You are so brave and an inspiration to others out there and im really glad i found your blog and took the time to read it, all the best to you and your family including your little peter pan xx

  7. Nicola,

    Your story moved me to tears. I too lost a son, back in 2005.

    My wife had a normal pregancy but my son, Sam, was brain injured during delivery by oxygen starvation.

    He was with us for 18 months before he went to play with the Angels.

    He has cerebral palsy and epilepsy. We had the same care as you from the hospital and Sam stayed in Special Care Unit. We took him home after 4 weeks.

    My wife and I struggled, not wih Sam who was the most amazing baby, rather with the future.

    We both had counciling and psychiatry. As you say, not an experience to be wished on anyone.

    Sam touched the lives of many people in the short time he was here. He had over 100 people at his funeral and they each knew him - not just us the parents.

    We could not have coped, but for the wonderful care we received from the local Childrens Hospice.

    I am happy to hear that you found some measure of peace - we have, with our daughter. She is as beautiful and just as happy a soul as he was. It was a long time coming but it came just the same.

    I hope you never regret posting your story as it is truly inspirational and helps more than you could know.

    Thank you.

  8. Dear Nicola,

    Thank you for writing this Blog.
    I am a grown man and father of 2, and have tears rolling down my cheeks as I read this.
    My Wife and I lost a baby half way through a pregnancy, and that was bad enough, I cannot begin to imagine the hurt you all had to go through.
    I thank you, because, sometimes my kids get on my nerves, and I moan about trivial things, but reading a story like yours, makes me realise how incredibly lucky I am to have them.

    I'm very happy to hear that you have been blessed with another Son, and wish you all well.

    Thank You


  9. You are so brave for throughout all of this, You and your family should be proud of eachother for dealing with this and happy for the amazing moments you spent with Benjamin.
    Your amazing for sharing this and I wish I was as brave as you and your family.

  10. So moved. love to you and your family xxx

  11. thank you. God bless you all. x

  12. Dear Nicola

    I am nearing the end of my midwifery training.
    Your story has inspired me, it has also helped me to try to understand what families such as yours have to deal with.
    Thank you for sharing your story, you are a very special and brave person and I wish you and your family all health and happiness.
    Benjamin was a beautiful baby.
    God bless x

  13. Dear Nicola

    Thank you for sharing your story. You and Lee were so brave to continue with your pregnancy and I hope your story gives others the courage to take this decision in similar circumstances, if they feel able to.

    I recently lost my seven year old son, William, to leukaemia. It was the hardest thing in the world to have to break the news to him that the last course of treatment had failed and that he only had a few weeks to live. He was so brave though, and had a strong faith in Jesus. He died in the early hours of Easter Sunday this year.

    I hope that one day I have the courage to share our family's story in the way that you have.

    With lots of love, Emma xxx

  14. Dear Nicola,
    Thank you for sharing your journey. A friend passed this blog along to me after we lost our daughter, Elise, about a month ago. I think your site helps those who have lost, and those trying to support them. I realize that grief is so indivdual, and friends and family feel at such a loss for what to do or say to help. Sometimes just retelling the story helps me. Our story is similar, but we had hope until after our daughter was born. There were concerns starting at about 16 weeks of the pregnancy, and I was hospitalized several times and on bedrest for early was a very turbulent pregnancy and full of anxiety! We didn't know how severe her brain, heart and airway birth defects were until after she was delivered. Then slowly we received more and more bad news each day as more tests were done in the NICU. After about a month we knew her heart function was diminishing, and there was nothing that they could do but keep her comfortable. Unfortunately there was no timeline and we didn't know how long we would have with her. She moved from the NICU to another room at the hospital for palliative care. Each moment we had with her was precious and she taught me so much in her short little life! We have so many, many gifts that we take forgranted! Even though the doctors told me she could not see or hear, I know she knew who we were. When I would come into her room each day (I had 2 boys at home to take care of also, otherwise I would never have left), she looked so pale and within an hour of holding her, her little lips and skin "pinked" up from pure love. I never looked in the mirror, but I'm pretty sure she did the same for me. Mother's instincts are so strong...I remember telling my husband about two weeks before she passed that I felt we didn't have much more time with her. When he asked why I thought that, I couldn't give a reason...I just knew. A day before she turned 2 months, she died very peacefully in my husband's arms with me right there.....and I felt so much peace for the first time in months!!! I know she is ok, and I know she can see and hear me I look up and tell her I love her and miss her sometimes! She has given me such an eternal perspective on life, and for that I am truly grateful. I know your painful empty arms and the sting of jealously when you see other moms with their healthy babies. And the guilt you feel for those awful thoughts and feelings! From your story, I can see that it is possible to keep going, and to keep hope alive for future children. I'm sure it'll just take time for me to get there too. Anyway, thank you for sharing your story and helping the rest of us who are mourning to not feel so alone! Wishing much more peace and happiness in the years ahead!