My wife and I had our 12 week scan and they picked up that the NT measurement (skin on the back of the neck) was very high. Within 2 weeks we had gone for a CVS, heart scan, detailed scans, spoken to a geneticist and much more. Our baby was diagnosed with Turner's syndrome and while we were constantly told that the prognosis was poor, it took until a scan at 19 weeks to be told that there was as good as 100% chance that it wouldn't make it. We are currently having weekly heart scans and waiting for the bad news.
My wife and I sat down to talk about the next steps and I honestly feel so disconnected from everything. With our first baby I really didn't feel very much until that moment I held her for the first time.
We have been asked if we want to spend time with the baby after it has been delivered, about naming it, taking photos and doing hand prints as well as funeral/ceremony arrangements which is just too much. Our baby is still alive.
Would really appreciate some input on how others have processed a late stage miscarriage and the practical parts of the time after.
Hi Mikky, Firstly, I’m sorry to hear of what you and you wife are currently going through. I can imagine that everyday must feel like a right challenge at the moment. Every person is different in the way that they handle emotions. You say that you are currently feeling disconnected, do you think that is because you are now fearing the worse due to the way the hospital are talking? Or have you felt like that from the start? Mine and my wife’s miscarriage was at 14 weeks, so we were not as far on as you, but I know the closer it got to that delivery date, I think I’d have felt worse than I already did. Talking with your wife Is a brilliant thing to do, whilst it might be heartbreaking and hard to do, you need to be there to support each other as much as you can as you go through this experience. I agree with you, that the hospital already making plans is a bit disrespectful. Until the outcome happens, they should be coaching you both through this scenario you are in, but on the other hand they may just be trying to prepare you and ease in the ‘what if’ factor also. However, I fully agree with what you are saying - how can you make plans now when they don’t know for sure! With regards to practical parts of the time after, everyone deals with grief in their own way, there is no right or wrong way to deal with grief. Make sure you are there for your partner, comfort her when she needs it, wait on her hand and foot, if needs be but remember to take time out for yourself also! There is nothing worse than being in a room alone with your thoughts. Just know that we are here for both of you, and if you feel that either of you need some professional help, we work with some wonderful charities who can help you out also. If you prefer to speak in DM rather than in the forum, please feel free to message us via inbox. My thoughts and prayers are with you both. Chris.
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.
Hi Tom, Firstly, very sorry to hear about yours and your partners pregnancy loss. Secondly, thank you for sharing your story. You are bang on with what you have written. Grief effects everyone in different ways. I also fully agree with charity counselling if that’s something they are interested in. We’ve partnered with some fantastic charities so can definitely get them the help they need. Once again, thanks for sharing this, I hope you and your partner are keeping well and remember we are here for you also if you ever want a chat. Chris