Baby Loss Awareness | Thanatophoric Dysplasia | Termination for Medical Reasons | TFMR |
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- Опубліковано 8 лис 2024
- In honour of Baby Loss Awareness Week this is my story of losing our baby boy, Adam, at 21 weeks. He suffered from a genetic condition called Thanatophoric Dysplasia which meant he would not have survived after birth. It's very important for me to raise awareness of parents who lose babies in this way as it such a difficult and upsetting position to be in.
Please be kind when commenting on this video, I appreciate it is a sensitive topic.
You can find out more about Tommy's here: www.tommys.org/
Another great charity is SANDS: www.sands.org.uk/
If you have any questions or have had a similar experience please leave me a comment below or get in touch ohhidiy@outlook.com.
The blog posts I mention in the video can be found here:
Adam's Story: www.ohhidiy.co...
My Anxiety During Pregnancy: www.ohhidiy.co...
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My heart absolutely breaks for you, I can't imagine what you went through. So brave for making this video, I'm sure it will help others in a similar situation xx
You seem like such a kind, genuine person. I'm so sorry you and your family had to go through this. This was something that happened to you, not something you did. Don't ever feel guilty or let anyone make you feel bad.
Hana Kellogg thank you so much, that means so much to me xx
Thank you for your courage in sharing your story and for bringing awareness to this particular type of baby loss. It is absolutely a loss and I am so deeply sorry for your loss. Your sharing helps us feel less alone.
Thank you for this video ❤️ I’m so sorry that you and your husband had to go through this. God bless you guys, I’ll be praying for continuing comfort and peace.
Taylor Retherford thank you, that’s so kind of you xx
You are part of a community of women who have had to say goodbye to their child and you have every right to grieve and feel part of that community, so don't ever let anyone tell you otherwise. A mother's love is shown in a million different ways and this is one of them. xx
So incredibly brave for sharing this 💙 This will help so many parents who have experienced the awful loss of their child xxx
You didn't deserve pain. I am so sorry for your situation. I can't even imagine going through that. Not one bit of that was your fault. Sending love and hope you are in a better place now a few years later.
My heart goes out to you! I'm so sorry for the deep loss of your son! You did experience a loss of a very much loved baby.
Thank you so much xx
I'm 23 weeks, I'm absolutely devastated. I'm getting induced this week due to Thanatophoric dysplasia. I'm in so much fear.. Of the what ifs. The regrets..the emotional pain💔💔
Please share your experience, I'm 25 weeks and my son was diagnosed with the same mutation. I am devastated and so afraid of aborting. Decided to keep the baby and let nature take its cause. I am not sure if i took a right decision though.
I am so sorry you have to go through so much pain.
@@namhlamki7671 please let me know what happened?
I’m going through a similar situation right now. I’m 15 weeks and my baby is said to have some fetal abnormalities. I don’t really understand all the terms they used but the pregnancy is to be terminated tomorrow. I know it’s for the best but I’m really struggling to let him go because I keep thinking, what if by some miracle, he turns out alright although the doctors say he’ll either die or live with a critical illness. I’m glad I watched this video. Helps to see that someone else has gone through it and understands that feeling. Thank you for this
Milcah Yusuf I’m so sorry for what you’re going through. I know that feeling all too well. Our scans were very clear about Adam’s abnormalities so we didn’t really have any hope. Maybe you could call your doctor and get them to explain everything to you properly? It’s so hard to take everything in during the moment, I just wanted to get away from everyone as quickly as possible. Sending you so much love and strength for tomorrow. You’re so much stronger than you know even though I know that you’ll feel at your weakest. Make sure you accept any support afterwards that you can, it’s so important and I’m here if you want to talk xxx
Oh Hi DIY! I appreciate your kind words. I had the pregnancy terminated just 2 days ago because I had to really understand the anomalies they saw. I was shown the baby and now whenever I am alone the image comes to my mind and I break down afresh. How do you move on from that stage?
Milcah Yusuf it’s still so fresh for you lovely. Give yourself time to cry and to grieve. Try and find something that can distract you, I knitted a lot in the following days and started to do yoga. It takes a long time to not feel broken but you get there. Please make sure you have some professional help and support, there are so many complex emotions and it’s important to work through them all so you can move on xxx
I'm about to have an amniocentesis today which will determine whether we need to make this decision and I'm terrified. Absolutely terrified. We tried for 2 years and 2 weeks before IVF we found out we were pregnant. I'm grieving with you and I absolutely feel the pain you feel.
Your very brave for sharing and I’m truly sorry for your loss. Thank you for sharing something so personal I know it must have been hard.
I'm sooooo sorry for your loss... but your so brave speaking about this!well done you😍
You are so incredibly brave for sharing this xxxx
Hi, we are now in 2022, I am in the same condition as you. I had to interrupt my pregnancy for the same reason two weeks before . The way you described your feelings is the same way I feel right now. I feel guilty, sad, desperate, lonely bcz I can't talk to anyone about what I feel, I don't know if my son will forgive me or not for what I did, but the decision itself was sooo hard to make, it was so painful. I did what I did to stop him from suffering especially in the country where I live I know that the health care is not that good. I can't even describe how much I loved him, I wanted him so bad even if I already had 2 children but I really wanted a third one. I love him and I will live him til the end of life. I'm so sorry I couldn't do anything to help him or to save him. I'm a bad mom bcz I didn't have the courage to continue my pregnancy. I'm sorry baby.
I’m so sorry for your loss. You’re not a bad mum at all, you made the hardest decision out of love for your baby. It’s taken me a long time to come to terms with making that decision but it gets easier. For now, please try to be kind to yourself and bear each day as it comes. Give your two children cuddles and tell them about their brother. He will live in your heart forever and he loves you xx
@@OhHiDIY thank you so much for your kind words.
Thanks for your bravery and strength in sharing this video. Unfortunately, me and my partner are going through a similar experience 💔
Thank you, thank you so sooo much for this video. I’m currently going through this with my unborn son who has type two TD and it has been unbelievably hard and I’ve been struggling with how to handle it.
Auddie R I’m so sorry that you’re going through this. I would really recommend counselling, it helped me tremendously because this isn’t the sort of situation that is easily dealt with on your own. It’s so outside of any frame of reference. Sending all my love to you and your little one xxx
His name is Bennett and thank you, I’ll try talking with a doctor to see if they can help get me set up with one. Your video helped put things in perspective a bit, I know I plan on doing the same thing cause I don’t want him to suffer it’s just hard to have to face the reality of it.
Thank you for sharing. We just received a diagnosis of Thanatophoric Dysplasia. I am 22 weeks.
I’m so very, very sorry, I wish no one ever had to hear that news. If you’d like to talk to someone who has been through it my email address is ohhidiy@outlook.com. I’m sending you and your family lots of love xx
Can we have a normal baby after one baby dectected with such defect? I recently lost my piece of heart to the same condition.. and so worried if it repeats if I get pregnant again...y
I’m so sorry for your loss. We went on to have a healthy baby boy after losing Adam, he’s two and a half now. Thanatophoric Dysplasia isn’t genetic, it’s a 1 in 42,000 chance of happening so hopefully you’ll be able to have your own rainbow baby ❤️ sending lots of love xxx
@@OhHiDIY thanks dear.. its just been 2 and half week I lost him.. so difficult to cope with situations.. your repl made my day
@@sushmitapal5153 i hope we can hve our rainbow baby next. Pls tell me,if you have conceived already after ur lost.
U r brave women good decision as my sister going through the same next week
I m also the unlucky one.. 😓