TFMR for Dandy-Walker, severe brain and heart abnormalities – looking for similar experiences
Hi everyone. I think I just need to let some of this out, but I’m also hoping to find someone who may have been through something similar.
I had a TFMR in May after our baby boy, Gabriel, was diagnosed with Dandy-Walker malformation and severe abnormalities affecting his brain, as well as a heart defect. We were given an extremely difficult prognosis for his future and were told about all the difficulties he could potentially face throughout his life...
Gabriel was so wanted and so loved from the very beginning. I never, ever imagined that I would find myself having to end a pregnancy that I had wanted so desperately. I never imagined that something like this could happen to us, or that I would ever have to make such an impossible decision for my own child.
But when we were told about the severity of his condition and what his life could potentially look like, all I could think about was him..
I didn't want my son to suffer...
In the end, I chose to carry the pain myself rather than risk putting that suffering onto him.. It was a decision made completely out of love for him, but knowing that doesn't make living without him any easier..
Gabriel was born on 3rd May, and on 3rd September it will be four months since I gave birth to him.
His due date was 14th August, so I have just passed what should have been one of the happiest days of our lives. Instead, I had to go through that day without him.
I miss him every single day, every hour, every second. I honestly don't know how to live with this yet. At the moment, I feel like I'm not really living — I'm surviving. I love him more than I could ever explain, and there isn't a moment when I don't wish things could have been different.
I wanted to ask if anyone here has been through a similar situation, particularly Dandy-Walker or another severe brain malformation together with a heart defect.
In our case, the genetic testing we have had so far did not find a genetic cause. On Monday 24th August, my husband and I have an appointment with a geneticist and a midwife, and I'm really hoping they will be able to offer us some further testing or reassurance before we try again.
Despite everything that has happened, I really want to try for another baby. We are hoping that, if everything is okay and the doctors are happy for us to do so, we might start trying again in September.
That thought gives me hope, but it also terrifies me...
Has anyone here been through something similar and then felt the desire to try again? How did you cope with the fear of another pregnancy? Did you have additional genetic testing beforehand?
And if anyone has gone through a TFMR for similar abnormalities and later had a healthy pregnancy and baby, I would really love to hear your positive stories.
Right now, I think I need some hope and encouragement from people who truly understand this kind of loss and the fear that comes with trying again.
Sending so much love to everyone in this group who is going through this kind of pain right now. I'm so sorry that any of us have had to find ourselves here. ❤️