How to deal when you can't get closure?

[aprilz81]

Once again I am failed by modern science.

Our insurance approved whole exome sequencing (a 15-20,000 test) and we got the results today.  The results showed no known disease causing mutations, so we still don't know what caused all of the seemingly random issues with Ava.  We know the CDH caused her death, but we feel that there is some sort of genetic component to everything else (missing thumb on one hand, out of place thumb on the other, shortened forearms, low set ears).

The good news is that they also looked at our DNA and could find nothing that would cause Ava's condition so the combination of results mean that we have a very slim chance of this happening again.

The bad news is that I don't have a name to put to it.  I want to be able to say Ava had "X" condition.  I don't know why that is so important to me, because whether we have a named syndrome or not the end result is the same, our daughter is not with us.

[fikafairy67]

I get where you are coming from. For us it's a bit different because we know WHY she became so anemic, but we don't understand why the procedure that was supposed to help her, probably caused her to pass away ultimately.

Not having the why is hard - not only why all of that happened, but why us?

*hugs*

[fknhostile]

There was a moment where we thought we figured out what caused our loss. Then a week later we found out that wasn't actually the cause and we will never know what happened. It turned out, for me at least, that I felt no different after receiving that information. I realize I will never have full closure.

I'm happy you were able to get some results today.

Hugs. It's tough.

[professormcgonagall]

I'm sorry, that's so rough not being able to understand what it was. Or why it happened.
We will never know how my placenta got infected and that is so hard.
I really hope that it was so random that it won't happen again.
I'm sorry. Hugs

[Deleted]

I'm sorry you don't have all the answers. I never got any sort of answer for why we lost Jackson or why he wasn't growing. It still gets to me.

[sandj918]

I'm so sorry. I know that not having a definitive answer is hard.

[iheartbroccoli]

Hugs, I'm so sorry. Not knowing can be so hard.

[aprilz81]

Thanks all. My spirits are better today and I"m coming to terms that we won't know her condition on this Earth.

[doves654]

That would be very hard. Sending you love.

[fknhostile]

How have you been doing lately?

[aprilz81]

Jan 25, 2017 16:46:55 GMT -5 fknhostile said:

How have you been doing lately?

Better. Today is our 3rd wedding anniversary and we are going out to celebrate.  I've thought a few times that we should have a newborn in the house and be too tired to go out, but the thoughts haven't brought me to my knees, they have just made me a little sad.

I've mostly come to terms with the fact we will never know why she didn't make it.

[fknhostile]

Jan 25, 2017 17:20:22 GMT -5 aprilz81 said:

Jan 25, 2017 16:46:55 GMT -5 fknhostile said:

How have you been doing lately?

Better. Today is our 3rd wedding anniversary and we are going out to celebrate.  I've thought a few times that we should have a newborn in the house and be too tired to go out, but the thoughts haven't brought me to my knees, they have just made me a little sad.

I've mostly come to terms with the fact we will never know why she didn't make it.

I hope you have a wonderful anniversary and can have a good time.

[shandorfml2]

I hear you. We had no answers either. I'm guessing one day there might be an answer for what Ava had, sounds like a genetic thing, but maybe we haven't identified it yet? Who knows. It is all so hard. I am glad though that the likelihood of this happening again is slim.

[angelsnight]

Now knowing why is so hard. In our case, my doctors think it was an incompetent cervix...basically my cervix was a trapdoor that gave way when there was too much weight on it. But there are many other doctors, one in the same practice, who doesn't think IC exists at all, and that I went into pre-term labor because of an infection.

So I'm left thinking...if it wasn't IC, how did I get this infection? Was it my fault? If it was IC, why was my cervix like that? It's also very hard for me to know that there was absolutely nothing wrong with my angel. She had no suffering that ended when she passed, she was perfectly healthy, it was just my body that failed her, and couldn't keep her safe. It's been almost 4 years, I've gotten better about it. But if I really sit and think about it, the not knowing and the questions can still drive me mad. Hugs!

[riya]

Premature deliveries are difficult to overcome. Dont point the finger at yourself. It's not your fault. Some face infertility and some face miscarriages. I have faced infertility for 10 years. The reason was unknown. I was so vexed. I know it is never easy to face infertility. I was left barren. You are fortunate that you have opportunities to consider an infant. All things considered, as I was barren and I had no other alternative.

[gerge12]

aprilz81 I read your post. I am so sorry for your loss. But I think you should be thankful in one sense. You have identified disease sooner. Otherwise it may turn into a fatal disease. You have good as well as bad news. You are clear to your point. Much familiar to what is happening around you. Don’t lose hope. Life is ahead of you. Need is just to make several trials. I know this hurt you but what we can do. We all are helpless in front of these type of diseases. Choose another clinic and have a procedural treatment. Science has made progress much these days.

[makiharukawa]

Extremely sad to hear about your loss. We are all here for your support. Please do not hesitate to ask us for anything. It's sad that there are still not enough advancements made to find out about these diseases. It can cause so much stress to a person to lose their child to these illnesses. I hope they do something about this soon. To all the future mothers, i beg you, please stay in your best health when planning a pregnancy. Make sure to take your medications. I really hope you find peace and happiness again. Hugs and kisses for you. Take care!

[alice99]

Hello darling. Don’t lose hope. Life is ahead of you. Need is just to make several trials. I 2hope your pain eases soon. Take care.

[jennifer123]

I am really sorry to read about your loss. I can understand how hard this must be for you. However, don't lose hope. I know it is easy said than done. However, it is still very important that you start researching. I would suggest switching your doctor. It is important to do so. Or at least get a second opinion on this. So that you know the full story. I hope you are able to conceive soon. Just know that technology is improving drastically. Therefore, there are many treatments that you can consider. I know a clinic that is offering Mitochondria Donation a long with IVF. That is really amazing.

[hally]

I'm sorry, you've had to go through this. It's hard to deal with such a situation. The best way of dealing is by taking your mind off it. I know it's easier said than done. If it was easy then it wouldn't mean so much! Hopefully, you keep trying and manage to conceive, again! Good luck to you, you can do this!