Anyone here had a TFMR and know theres a good chance of it happening again?

[natalie11char]

Sadly I have a chromosonal problem which if passed on to my baby we wouldn't be able to continue with the pregnancy which breaks my heart to say.
I am so scared about getting pregnant and the weeks leading up to the relevant tests etc, but just wondered if anyone else was in a similar boat, or if anyone else knows they have a good chance of their problems recurring again. Sadly I have a 50% chance with every pregnancy

I feel so alone

 

[ItsAWonder]

I am so sorry you are going through this. I have had two miscarriages and no live births. During my last pregnancy we found out that my husband has a degenerative eye disease and we have a 50% chance of passing it on. There is no way to test for this until a person is in their 20s. Although it does not mean that we need to TFMR, I know the fear of that 50%. Now, there are treatments for his disease but he will need cornea transplants every 3-10 years on each eye. I hate the idea of passing it on. My docs and his have told me that, by the time we have a kid and he/she grows up, the treatment will be easy and effective but it's scary. We have decided to still try to have children.

Is this something that they can test the fertilized eggs for through IVF? That way they only implant healthy eggs??

 

[natalie11char]

ItsAWonder I guess probably not because its not chromosonal? My condition can be diagnosed by blood test at any age.
At least there is treatments... doesn't make it any easier at the moment I am sure, but try and look at it positively .
Sadly my condition could leave my child with severe disabilities, epilepsy, severe malformations, and probably the most scariest multiple brain tumours. I just know that I couldn't watch my child suffer a brain tumour. I know its not a dead cert but I just couldn't live with myself that I could have stopped that.
Also if they dont have the worst of the complications they would have to be facing the descisions I am making now when they choose to have children, and I know how heartbreaking and difficult it is, so if I can go through the pain for my children now then I will. I wouldn't want my children to go through what I am going through now

 

[ItsAWonder]

I am so sorry. I cannot imagine facing what you are going through. Of course, I understand the desire to carry a pregnancy, but are you now thinking about adoption or will you keep trying? At least you can TFMR even though I am sure it is very hard on the heart. I keep trying to remind myself that 50% means that I have a 50% chance all will be fine. Although my husband has his disease, his two brothers do not.

 

[natalie11char]

We haven't been through it yet. This will be our first pregnancy since my diagnosis, (I was extremely lucky to have it so mildly but unfortunately it has no effect on the severity of my children) I think we will try once and if we do have to have a TFMR we will then reassess after that. It is such a wanted pregnancy so I know it will be heartbreaking, so not sure whether I would be able to go through it more than once. I guess time will tell. Its just so scary going into the pregnancy knowing we may have to say goodbye at around 15 weeks.
I keep trying to think that, there is also a 50% chance everything will be fine, but its playing on my mind so much now we are TTC.
I feel pretty positive, but also trying to prepare myself for the worst.
The problem is there arent many people in my situation or similar so I feel so alone. Only a couple of close friends know and as much as I know they will help, no one will truly understand what we are going through.

 

[ItsAWonder]

Wow. It is such a hard thing to face and I only hope that you land on the good side of 50%. There have to be support groups out there for women facing these decisions. I promise you, although the numbers may not be large, you are not alone. If I come across and hotlines or sites, I will let you know. Feel free to message me anytime if you want to chat.

 

[ElliePM]

Try talking to genetic counselor about Preimplantation Genetic Diagnosis (PGD). They can test the embryos before implanting.

 

[klsltsp]

Hey I was going to say the same as the last poster. I had a friend with a chromosonal issue, they had a 25% every pregnancy. They lost the first at 22 weeks, and were then diagnosed, thier very next pregnancy was completely healthy!!! But she had heard about the the testing and was going to try once and if not then look at IVF, and having the embryos tested before implanted.

Good luck!