Difficult and sad end but wonderful people and charities to support us

Hello everyone, sadly our baby, who we've since found out is a beautiful girl will be joining the stars shortly x We've had a rollercoaster 3wks following our 12 week scan....actually taken at 13wk. It showed high risk of chromosome issues or a severe congenital heart problem. We've had various additional tests including the invasive cvs and been incredibly 'lucky' to have a wonderful specialist midwife to support us. She quickly set up an additional scan with a fetal heart expert at uni college London hospital (inbetween the rapid results of cvs came back clear so we were a mix of positive and anxious as it could be the heart). Sadly uclh scan suggested a severe, rare and multiple heart problem. They arranged another scan quickly with Great Ormond Street fetal cardiology team. Sadly our worse fears were confirmed, our little girl is severely unwell with an range of issues. She is happy inside me but won't survive longer than a few days naturally -she would be in an incubator etc too. Her little heart cannot be fixed surgically as far too risky and no guarantee of life. Major heart surgery could potentially only help as an intervention again with extremely high risks. She will face endless interventions and her quality of life will be slim and heartbreaking. So we have taken a very difficult decision to end our pregnancy. It hasn't been easy and we've been supported by loving family and close friends who we decided to tell. My post isn't to ask for sympathy or replies. I'm writing from the heart to say although it has been and continues to be a terrible time whilst we await the procedure (i couldn't face labour) there are some amazing charities out there to offer confidential support. I wanted to share this in case anyone sadly has to go through a similar path to us xx Ending a pregnancy is a terrible decision full of guilt and worry of judgment. But we know in our hearts this is the right thing for our little girl and have been held up with so much support and love from people. Firstly, and I'm a strong believer in never say never, I called the ARC (Antenatal Results and Choices) helpline. I 'never' thought I'd call a helpline as I'm a 'supporter' if that makes sense...and don't often turn to people for support I'd rather get on with it! In fact I never thought I'd join this network and contribute posts. Anyway ARC arc-uk.org have been fantastic, supportive and impartial listeners. Providing unbiased information. They are a tiny charity and I wouldn't hesitate to recommend them. I called them initially after our 12wk scan after being signposted by our midwife. They helped me think about all options whilst making the decision to have a cvs test two days later. I continued to keep in touch and have called them a couple more times for support on which end pathway to choose (we are 'lucky' we have a choice) to help our little girl on her journey to the stars. I've donated to them as at the moment it feels like the only positive and proactive thing I can do. We've also read a lot of information, again extremely balanced and supportive on the Sands website - signposted by our midwife and ARC (ARC also has excellent booklets). uk-sands.org. Our midwife gave us a small memory box from SiMBA simbacharity.org.uk -such a lovely gesture. I donated to them too to replace the kind box we'd been given to help others. We were given the option of two clinics for our end and chose bpas bpas.org They have been fantastic and so kind. Their website has a wealth of information to help make an informed decision that is right for you. I strongly believe everyone has a right to their own choice no matter what others may think. Bpas most importantly for us has a fetal anomaly pathway which recognises our specific situation and that our little girl is loved and very much wanted. We are also able to have her remains transported to our hospital. We have been signposted to other charities and support but only used these ones so far. I hope my post isn't seen as insensitive as my intension was to show for us, during a heartbreaking time there are people you can turn to confidentially for support. I hope in time the darkness will fade for us. Our little girl, our first pregnancy will always be in our hearts and loved. We will be lighting a candle at 7pm tonight for her as part of the 'wave of light' initiative as part of baby loss awareness week. I wish you all the very best no matter what journey you are on. Thank you for taking the time to read my posts especially this lengthy one! Your warmth and support has been so comforting xx

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40 Replies

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  • Dear HopeNY,

    I am so sorry for your loss. What a terribly sad journey you and your little girl have had. Thank you for sharing such detail, it is brillliant to hear these support networks are available.

    Thinking of you


  • Thank you sipidania xx

  • I'm glad you've had the love and support in a time that I can only imagine was the hardest decision ever.

    Look after yourself X

  • Thanks x It is a heartbreaking time but so lucky with all the kindness we've have.

  • Lots of love and prayers for you both in this time. I admire you for being strong and looking out for your little girl.

    God blessπŸ’™

  • Thank you x

  • I am so desperately sorry for you. What an awful thing to happen you sound a very strong and brave person.xx

  • Thanks x I don't feel brave or strong just getting through each day x

  • You are so brave and strong. You have brought a tear to my eye reading this. Take care of each other at this sad time xx

  • Thank you x my husband has found it particularly difficult but we are supporting each other through this. I'm so lucky x

  • Oh my goodness πŸ’” My heart breaks for you. Thanks for sharing. πŸ™πŸ™ and love for you and your little girl. I'm so sorry sweetheart xxx

  • Thank you x

  • You are amazing. Thank you for sharing your story and helping others. Your little girl is very lucky to have you. You have done your best as her Mummy. I'm very sorry that you're having to go through any of this ✨✨✨ 🌟

  • Thank you x

  • I am so very sorry for you and your family. I admire ur strength and thoughtfulness at such a terribly horrible time to share your story to help others. I will light a candle tonight at 7pm too for ur beautiful Angel xx

  • Thank you so much. That is such a kind and thoughtful gesture and we both really appreciate it πŸ’– Sharing is so important to me to help ease other people's pain. We have been lucky with our support. Our candle is burning brightly 🌠

  • So is ours xxx

  • So sorry to hear what your going through, cant begain to imagine how you feel and i have no pearls of wisdom but just wanted to send you a huge hug, take care of yourself xx

  • Thank so much x I don't know how I feel either to be honest. It is unreal. I'm still pregnant and keeping my little girl company for another couple of weeks before her journey to the stars xxx

  • Bless you, stay strong. I just have no words because i dont know how i would cope in your situation xx

  • I'm so sorry that you are going through this, I hope you find the strength to be strong, sending you big hugs xxx

  • Thank you x

  • Thank you for sharing your sad story. This whole process is just heartbreaking. Much love. x

  • Thank you for reading my post x

  • Hi my dear, laid in bed listening to the rain and read your post, blew me away. You write so beautifully and so pleased you have had great support at a time you so need it. I can't imagine what you are going through, I am not sure what I even wanted to write, I just wanted to send you a big hug and to say thanks for sharing and giving the charities the recognition they deserve. We all here for you...will light my candle now for your little girl...tons of love to you xxxx

  • Thank you for your hug and lighting a candle. So kind x The charities are amazing and a lot of staff are volunteers who've also had difficult journeys. It's sad I've heard about them now but my husband and I are so grateful for their support and dedication x

  • I'm so sorry to hear this what a heartbreaking time for you. Thank you for sharing the help networks. Thinking of you and wish you all the luck in the future x

  • Thank you x I wanted to share the kindness we have received for anyone that should need it. They've really helped x

  • How heartbreaking for you - I can't imagine how hard things must be right now. I'm sure your post will be helpful for people to read for the future.

  • I hope so x

  • So so sorry to read this.. You are incredibly brave in an impossible heartbreaking situation xx I wish you love and strength in the coming months.. Charity's such as SANDS are a lifeline.. I also lit candles for the wave of light last night and I am thinking of your little girl today and you xxxx

  • Thanks so much x

  • Hi HopeNY16, I am so so sorry for what you've had to go through. Stay strong xxx

  • Thank you WeeMrsH x

  • What a devastatingly sad time for you both!! I just wanted to say how sorry I was to read to read your post!! Look after yourselves!!x

  • Thank you for your message Cinderella5 x

  • Oh what a sad sad journey for you and your family. I am sitting here is tears and thinking how brave you are to even write this post. My thoughts are with you. I can not begin to imagine what you are going through. She will always be in your hearts and minds. take strength from each other xxx

  • Thank you DC13. It is so heartbreaking and sad and I don't know what to do other than carry on looking after our little girl until she leaves us. We were hoping this would be our time but knew we were already extremely lucky to be pregnant. She is definitely in our hearts and minds always x

  • Sending you and your husband my love and comfort at such a terrible time for you. Your post has made me burst into tears, my heart brakes for you. You are incredibly brave and your baby girl will be at peace with the angels to watch over her. Sending you lots of love xxx

  • Thank you for your kindness Hannah143 x I really hope she will be at peace too 🌠

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