Hi Mikky, I’m so sorry to hear of your experience and I thought I’d share some of what we have recently been through if that’s ok. I’m hoping our experience can show that you are not alone in your journey and I’m available if you need someone to reach out. While our baby was not diagnosed with Turner’s Syndrome, we also received difficult news with our pregnancy earlier in the year after being told that the skull was not forming correctly in one scan, and then being formally diagnosed with Acrania-Anencephaly the following week. I don’t want to assume anything about what you are both experiencing but I just know personally it was devastating news to hear – we were told that it was likely we would miscarry naturally and if carried to term would only survive a few days with palliative care. After speaking with many Medical Professionals I have come to understand that they are legally required to fully inform the parents of their options - but having been overwhelmed with offers of funeral ceremonies, cremations, whether to hold and name our baby I know that it is devastating to hear and definitely feels like all of your options are being hurriedly presented to you in a very detached way and all while the pregnancy is still happening. After our pregnancy loss in February it has been very difficult and me and my partner approached it in different ways – with me burying myself in work and her taking a lot of time off. I too felt very disconnected and hollow and this in turn made me feel guilty that I wasn’t getting as upset as I thought I should be (we all come to terms with events in different ways). When you are both ready, I wholeheartedly suggest charity counselling services – there is likely to be a charity that operates in your area – to speak about what you are going through as I found it really positive to discuss my experiences from fresh with someone who know nothing about me or my situation. From friends and colleagues I have spoken to I’ve found that there is no fixed way to approach how you will feel and how best to process what is happening – all I can recommend is to focus on supporting yourself and your wife and reaching out to your support network when you need it. Feel free to message me if you need to – Tom.

Thanks Chris - all our thoughts are with you and your wife during this difficult time as well. Its inspiring to see you build something out of your grief to support others in theirs. I also felt like I was pestering my wife too much asking how she was all the time - I think its the knowledge that its their bodies that have gone through this terrible experience that makes us constantly want to check in with them. Its difficult finding the right balance between giving each other space to grieve and giving emotional support. I'm looking forward to seeing how the website develops - I've found reading about other experiences really empowering and think this will be a really powerful resource.