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
Last edited by HopeNY16
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.