Breaking The Silence
It has been one year today since I posted anything at all to this blog and today I’ll begin to break the silence.
These past two years have been a conflict of emotions beyond belief. On one hand things seem to be going pretty well and I should be a happy guy, but on the other hand things have been utter hell, and that’s putting it nicely.
To recap, On April 4th, 2008 we lost our son, Felix David Groce, stillborn with a suspected cord accident. To say that it hurt, and it still does, would be an understatement. After a gloomy year that I’d rather not relive, and honestly wished it was all just a bad dream, things seemed to be getting better (you never “get over” the loss of a child, so throw that notion out of the window right now). I felt like doing stuff again. I got some creativity back. Work was going well (and my clients were/are amazing). And we were pregnant again with child #5. Things were starting to look up.
Then in June 2009 we went in for the first ultrasound and got hit by a freight train. Our fifth child, and fourth son, Gabriel Elliott Groce, was diagnosed with a “universally fatal” birth defect known as Limb-Body Wall Complex. Long story short, we opted to carry him to term and did everything in our power to save him. We prayed and prayed and prayed for a miracle, but that miracle never came and he was born on October 19th, 2009 and my beautiful son died in my arms half an hour later.
Within the span of 18 months we had lost and buried two children. This just isn’t how it’s supposed to be. But this is how it is. And one of the hardest parts of all is the fact that short of taking ourselves out of the gene pool, there isn’t a thing that could have been done to change these circumstances. This is the hand that we were dealt and the river had already been turned. The only viable option is to play it out and hope that somehow the pair of two’s we are holding comes out on top.
There are so many dynamics to this whole situation that I could write a book on them. (And I just might.) But for today this will have to suffice as I gather my thoughts. The story will be told, so stay tuned.
March 4th, 2010 at 12:17 am
My daughter, Autumn-Evelynne, died of a Limb-Body Wall Complex. I was only nineteen (Twenty now), but I loved this child more than the air I breath. I still do. She brought a family that was filled with heartbreak back together. The doctors thought at four months that it was just an Omphalocele. I was sent to a specialist at Tufts Medical Center, where I was told not only was it a beautiful baby girl, but a beautiful baby girl with a Limb-Body wall Complex. Her spine was at a right angle as well, which, doctors deduced, was the reason I was gaining little pregnancy weight. She was “Stuck” in her position in the womb. I wanted to carry the pregnancy to term, to hold her before I lost her, as doctors said I inevitably would. Several more 3D ultrasounds later, I was informed that the umbilical cord was too short to give birth with, it was an extreme danger to me, and more so for Autumn-Evelynne. I was told that doctors at Tufts (Where she would have been delivered) would not preform a C-section for a child that would not survive. I had no options but to terminate the pregnancy.
I have the last ultrasound framed. You could see the organs outside of her, and the crook in her spine, but you could also see her tiny hands and feet, her face, her sucking her thumb. She was the most beautiful thing I had ever seen, defect or not. She was absolutely, unequivocally perfect.
Please,if you would, email me. I’ve never spoken to someone who’s had the same happen to their child. It’s heartbreaking to know other people have to go through it, but it’s a comfort to know I’m not alone.
March 4th, 2010 at 1:53 am
Jenna-Nichole, thanks for sharing. I’m sorry to hear that you’ve been through a child loss as well. Having lost two children I’d say that there’s nothing harder that I have ever been through.
With Gabe, our situation is similar, but our doctor is great and had no problem doing the Classical C-Section (which is more dangerous than the most common C-Section these days). But it seemed that just about all of the specialists seemed to push termination (not really an option in our case anyway due to the timing) & all of the stats pointed that way which was a upsetting. Having just lost Felix abruptly the year earlier we really wanted to cherish every minute that we had with Gabe.
Anyway, you should check out my wife’s blog as well and connect with her. She’s in touch with a few other people who’ve been through a LBW loss too (as well as infant loss in general).
And thanks for taking the time to comment! While it’s not a club any of us want to be in, it’s helpful to know that there are others who’ve been through the same thing out there.
August 30th, 2010 at 10:08 pm
I came across your webpage while trying to do some research on limb body wall complex, I am so sorry to hear of all the loss you’ve endured. My son, Ronnie, was diagnosed with LBWC at birth and we were told that he would most likely not survive. He is now 11 years old, and a very bright and happy young man. I normally would not post any comments in regard to this subject, but you seem pretty knowledgable and I was hoping that you might be able to help me find resources or any information about children who have been diagnosed with LBWC and made it through…if it’s not too difficult for you to talk about I would really appreciate it if you would share some of your knowledge with me.
September 1st, 2010 at 10:07 pm
I was doing research on what my doctors are calling Pentalogy of Cantrell(limb body wall complex). I’m four months pregnant with a beautiful baby boy, my first child. We were just diagnosised with this a week or two ago. Completely heart breaking news. I wanted to apologize about you childern the thought of loosing my child makes me weak, well all the time. I really want to talk to someone about it and i haven’t found anyone until now! Please write to me I have so many questions that my doctors will not answer yet…Our prognosis isn’t good but we have a lot of Faith in the strength of our child and we hope that me asking for help from someone whos heart has been broken twice will not upset you.
October 18th, 2010 at 9:27 pm
I am 36 weeks pregnant and my daughter is diagnosed with LBWC and has very small lungs. She also has a curvature in her spine along with clubbed feet and ventrical septial. The doctors are telling us that my baby wont make it. I am so upset. I dont want to lose her. She is the light of my life. Everytime I feel her move in my belly its magical. There is still a little hope left. There is a tiny chance we’ll get to take her home. I am living on that tiny chance. Please anyone with any info about LBWC or tiny lungs. Anything will help. please message me.
January 11th, 2011 at 11:48 pm
my johnny angel too taken from me by limbbody wall complex on november 17 2000.i know the pain all to well of losing a child. i have lost 2 more children to the same congenital defect. the dr’s dont know why it happens i was told by the first neonatoligest that it wasn’t genetic but soon found out 3yrs later that that was a lie . my next pregnancy ended horrably in a miscarrage at 17 wks and upon the medical exameners report it was due to limbbodywall a yr later the same was found in my third pregnancy at 18wks. this caused my divorce. we blamed each other. 2yrs later and a new marrage god gave us a beautiful little girl perfectly healthy.my void has been filled but the pain of the loss of 3 beautiful angels remains. not a day goes buy that i dont pray for my 3 babies waiting for me in heaven. and not a day goes buy that i dont tell my healthy daughter just how much i treasure her and love her deeply.the pain never goes away and the guilt of what if it was something that i did that caused this to happen but every day that passes you learn to cope with the loss.before my stepmother passed away i asked her 8 days before she passed away if she would hold my 3 babies and tell them just how much i love them and miss them and to holdthem tight till the day god calls me home . she told me she would be proud to have the honor to do so.may 8th of 2006 she went to meet themin heaven 830 am . after i got the call that she had passed i took my coffee out on the porch to cry and i asked her out loud mommasally do u have my babies with you and 4 monarch butterflies entered my yard and stayed there for quite sometime. for me this confirmedthat she had my babies in her arms.and with that some of the deep ache had gone. i pray that my story of loss lessens someone elses pain . may god bless the families that have suffered the same loss as we have and give them the straingth to live with hope.
February 15th, 2011 at 3:25 am
Hi- I lost my daughter, Beatrix Elizabeth due to a LBWC.
I stumbled upon this blog, and am interested in two of the responses here- #3 & #5.
If you could please put me in contact with these women- you can give them my email address and ask them to contact me….or my daughter’s story is on the Be Not Afraid Website @
http://www.benotafraid.net/story.asp?id=183
my email is on the bottom of the page.
Thank you.