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iVillage Member
Registered: 11-16-2009
New here.
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Fri, 10-05-2012 - 1:15am

I was 34w 5d when I gave birth to my daughter Aislynn on 9/26. Seven days before I'd been informed that she had grown a rare choroid plexus tumor that took up almost 2/3 of her cranium. We had a week before she passed away to process it all. This is such a rare tumor that there is no research. I'm a nurse and I'd never heard of it, the Pediatric Neuroradiologist had only seen it twice in 10 years of practice. I was mortified.

I'm beside myself but can't lay in bed all day, I have one year old b/g twins that keep me functioning though some days (it's only been a week) are harder than others. You see, she was my first spontaneous pregnancy to make it passed 9 weeks. My twins are IVF miracles after 13 years of trying with two different husbands and 6m/c. This was the worst thing I could ever imagine. I spent 10 years off and on on the TTCYFC board, now I find myself here. I look forward to getting to know you ladies and hopefully we can find some solace together.

~Tonya

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Fri, 10-05-2012 - 12:46pm
Oh no Tonya, I just don't know what to say :smileysad: I was so over the moon happy for you when you got pregnant with her, it just doesn't seem fair at all that this happened. You've been through so much to get her and the twins.

I'm so, so very sorry that you lost baby Aislynn, many (((HUGS))) going out to you and your family. We'll be here for you.

iVillage Member
Registered: 11-16-2009
Fri, 10-05-2012 - 1:02pm

Thank you Melissa, I'm still in shock, no one ever expects it to happen and when it does, it's the worst feeling in the world. I'm scared of getting pregnant again, but I'm not ready to give up yet either. It's just hard because I will be scared every time now, I don't get to enjoy it and I will always be waiting for the other shoe to drop, but I have time to get therapy and I have the time I need to heal, though I hate the waiting.

iVillage Member
Registered: 08-08-2012
Thu, 10-18-2012 - 7:59pm

Hello Tonya,

there is nothing harder than loosing a child..at any stage! I am very sorry for Your loss!

Three months ago I've also lost my son at 37 weeks of completely healthy pregnancy where nothing wrong was even found aftewards. But please know that it WILL get better, take one step at the time and don't think too much ahead, it is exhausting..Specially with Your baby twins to care for now..hopefully You have some help. I thank God, my mom arrived from Europe looking forward to welcome her grandson she had never got a chance to meet :( But she tremendously helped us go thru the first two tough months. I also have a 3 year old daughter.

Maya

iVillage Member
Registered: 11-16-2009
Tue, 11-20-2012 - 9:33pm

Thank you Maya. I'm getting better, actually crying more since I got off my antidepressant but with it I couldn't work through my process. I'm sorry for your loss, I think no explanation may be harder, I'm just waiting to hear if it was cancer or not for Aislynn. My twins just turned a year and are running around like crazy, but they keep me getting up in the morning.

I feel a lot of guilt about Aislynn because when I found out I was pregnant I was really angry about it, it took me 13 years to have my twins (IVF after 6 m/c) then when they were 3mo old I found out about Aislynn. I was trying to finish nursing school and almost a year to the day I was put on bedrest and given a cerclage. Now everyone I know graduates this month and I won't until June of next year. This whole year feels like it was for nothing. And worse, we were faced with the difficult decision to get a KCl injection to stop her heart because of the weeks of treatment she would be forced to endure before finally dying anyway. The mortality with her tumor is high, and it's so rare that they happen. I'm an LPN so I do have an understanding of what she would have gone through and I couldn't do it to her. I have guilt and nightmares about it. The worst one in the beginning was me trying to take a picture of my DH and the twins, we were on a bridge and I was halfway across, it's 6 lanes and the twins were on the rail and then I see them fall. That was for the first three weeks, every night. I hate this, it isn't fair for those of us who don't get answers, who have to work so hard in the first place to get pregnant and then to have it ripped away from us. I don't know why we are called strong, I don't feel strong. My DH's family treats me like I'm invisible if I mention her name, they pretend she never existed and for some reason I don't understand, they don't get either that even though I came home empty handed, I still delivered her, labor and all.

Thank you,

Tonya