I don't want to be here, but... (Intro)

PleaseSendPicklesNow · August 2016

Hi. Can I tell you our story?

We've been trying since December 2014. Our first pregnancy ended last summer with a miscarriage at 6 weeks. I was devastated but eager to try again, and got pregnant two months later. Our beautiful son was diagnosed with a rare and very serious heart defect at 24 weeks. At 37 weeks, I moved a thousand miles from home to be close to the BEST children's hospital for heart problems.

He was born at 42 weeks (!) and had open heart surgery when he was just 5 days old. He did very well, and we were so proud of him. But when they removed his breathing tube, things went downhill. To make a long story short, he was diagnosed with a rare genetic disease that caused his heart condition and breathing problems, among other things. The mutation that caused his problems happened randomly. It does not run in our families.

When he was 3 weeks old, our son died of respiratory failure.
This time, "devastated" doesn't even begin to cover how we feel.

We're not ready to try again yet; we're benched until at least January. I had an easy, uncomplicated pregnancy but a very complicated birth. A placental abruption led to an emergency c-section. And a week after birth, I came down with a rare case of postpartum preeclampsia.

But this seems like a good place for me now. I want to learn as much as I can about fertility and improving our odds between now and January.

If anyone here has experience with PGD (preimplantation genetic diagnosis), I'd like to hear your story. Our son's condition is unlikely to occur in our family again. But there is a small chance it could recur if one of us carries the mutation in our reproductive organs (genetic mosaicism). Our geneticist recommended PGD as a way to be 100% sure it wouldn't happen again. We're on the fence about it.

Edited for a typo.

JDW0325 · August 2016

I am so so sorry for your losses

DungeonTrollMel · August 2016

I am so sorry for your loss. I know one of our recent graduates did PGS with her IVF but I don't know all the details

RiverSong15 · September 2016

I'm so sorry for your losses. How heartbreaking. I don't have experience with IVF with PGD, but I wanted to say welcome and send hugs.

DungeonTrollMel · September 2016

There is also an infertility board (I know you don't have IF) where many of the women are going through IVF and most of them are having PGS/PGD done. I have heard they are a very good resource. Many of the women I know who spend time over there have also suffered several loses so they may be a good group in addition to here

Hopefulmommy1980 · September 2016

I am sorry for your losses.

you have been through a lot

PleaseSendPicklesNow · September 2016

Thank you. As much as it sucks to be here, it feels good to talk to other women who get it. My friends are supportive, but most of them don't really know how it feels to go through this.

I'll check out the IF board for more info on PGD.

SoonToBeMommaHowe · September 2016

@PleaseSendPicklesNow I'm so very sorry for your losses. I hope we can provide you with some much needed comfort while you're here with us.

szwill86 · September 2016

I am so very sorry for your losses. These boards and the ladies on this board are a great resource and (virtual) ear to listen.

brooklyngirl18 · September 2016

I am so sorry for your losses and everything you've had to endure, I truly can't even imagine. I hope you find support here while you take some time.

fivetimesnoluck · September 2016

I am so sorry for your losses, but am glad you have introduced yourself. This is a great group that has offered me tremendous support for the past six+ months and I hope you find comfort here too. I second @DungeonTrollMel, I participate in the IF boards as well as here and there are a lot of women pursuing IVF with genetic testing over there.

Please feel free to lurk and/or participate here as much as you want. There is a even Monthly Benched thread you may want to check out. I will be keeping you and your family in my thoughts.

szwill86 · September 2016

I am so very sorry for your losses. These boards and the ladies on this board are a great resource and (virtual) ear to listen.

KarenBeth714 · September 2016

I'm so so sorry for your loss. My heart goes out to you and your family. I am going through the pgd process right now, but we just started. My husband and I are both carriers of a rare genetic disease that we are testing for. We are designing the genetic probe shortly.

AL_TwinCities · September 2016

I'm so, so sorry for your loss. I remember you from the July BMB, and some of the July moms have been keeping me updated on your story. Sending you so much love! ❤

PleaseSendPicklesNow · September 2016

@AL_TwinCities Hi! The July board is/was a good group. I don't think I could've gotten through this summer without them. I'm sorry you're here now too. Fx for better luck this time!!

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