warning sad, baby didn't make it home

iVillage Member
Registered: 03-24-2006
warning sad, baby didn't make it home
7
Sat, 03-06-2010 - 9:02am

I have a son who is two conceived from fresh cycle of IVF.  My daughter conceived last June was conceived from a frozen blast.  I write for your infomration and for those of you who remember me...


Originally my baby girl Lauren was diagnosed with an antibody problem that caused severe anemia and hydrops.  She was treated with four intra uterine blood transfusions and was to be delivered by C section at 37 weeks.  It was believed that she was well and would suffer no long term effects. 


Our baby girl was born with severe complications. She was immediately intubated and placed on a ventilator. She was born with a severe rash, enlarged spleen and liver, she is deaf, she is micro cephalic (small head size indicating small and or damaged brain), malformation of her hands. Her diagnosis?  CMV.  The antibody was a misdiagnosis. While the blood transfusions kept her alive, they did not treat the CMV..they just maintained her life.  There is no treatment for CMV. 


CMV stands for cycleomegleo virus. CMV is a commonly passed virus among children and adults.  It is not dangerous to the vast majority of children and adults. 90% of 45 year olds have been exposed in their lifetime. It is passed the same was as the common cold.  IF a mother is exposed to the virus, the first time in her life, while she is pregnant (particularly the first trimester), the results are generally devestating to the baby.  In my case, the results were as bad as they can be.  We lost Lauren to CMV. 


Her room does not make me sad, her personalized Christmas stocking does not make me sad, her personalized boppy pillow, does not make me sad.  It did not make me sad to pump milk for a baby that I didn't bring home, or to return some of her most expensive things.  What makes me sad, is that I could not protect her.  That I had ultra sounds every month of my pregnancy, and that somehow nobody knew that she was suffering.  That CMV is so common (look it up) and that hardly anyone has ever heard of it.  It casues as many disabilities as Downs Syndrome and Trisomy, disabling one child an hour.  It makes me sad that at the end of the day I feel as though I failed her before we even had a chance to know each other.  Not EVERY baby exposed to CMV is as sick as Lauren was, but many many are.  I read hundreds of journal articles accesing the medical LIBRARY, not just google, I talked to experts in other states and in two other countries because my NICU here could offer me no real help.  In the end, conclusions were the same....hopeless. 


Healthy babies do not make me sad, joyous in fact for the miracle of birth.  I have a son and I attempt at this point to celebrate my blessings and not my tragedies.  Some days are easier than others and I am certain that the medication is helping. 


Liz

LizSiggysummer2009
 BabyFetus Ticker
iVillage Member
Registered: 12-05-2008
Sat, 03-06-2010 - 9:21am

Wow Liz I am so very sorry for your loss! You are an inspiration in positivity and I will have you in my prayers to bring you comfort during this difficult time. Thank you for sharing, I have never heard of such a thing!

Kristy 33 & Healthy
DH 37 w/Horrible sperm (very low concentration with low motility, 0 morphology)
Married since 11/08 TTC since 12/08.

iVillage Member
Registered: 11-02-2006
Tue, 03-09-2010 - 12:45pm
I am so sorry to hear about your daughter.

 

Lilypie

Avatar for scmirch
iVillage Member
Registered: 11-29-2004
Tue, 03-09-2010 - 2:12pm

Liz

I cannot even imagine what you are going through. My deepest sympathies are with you in your time of loss and mourning. Thank you for telling us about this. I had no idea.

Shal

iVillage Member
Registered: 05-15-2009
Tue, 03-09-2010 - 9:33pm

Liz-


I remember you from the boards and am devastated to hear about the loss of your daughter.

 

reena050809.jpg 0809 picture by reena102

iVillage Member
Registered: 10-06-2008
Wed, 03-10-2010 - 11:35am

My heart breaks for you and your family. Someone in my family has also suffered the loss of an infant, so I have a small idea of what you are all going through. I will keep you in my prayers and may God bless your sweet baby girl.


Thank you for sharing this information.

me,30 dh,31


ttc w/ mfi


ivf/icsi #1 oct


13 eggs retrived,11 mature. 4 fertalized using dh's frozen testicular sperm from tese. on day 3 all 4 embryos were "perferct" 8 cell. trensfered 2....bfn


ivf w/icsi #2


this time using fresh testicular sperm


retrived 13 mature eggs, only 1 fertilized!


ET was a day 2, of a 4 cell ,0 fragmentation great embie! bfn


 

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Wed, 03-10-2010 - 1:30pm
(((HUGS))) Liz, I'm so, so sorry about the loss of Lauren.

iVillage Member
Registered: 04-23-2007
Wed, 03-10-2010 - 4:53pm

Hi Liz,


I remember you from the PPAIVF board. I have not been active there in over a year, however some of my cyber friends are still around and they told us that your daughter passed away. I am so sorry to hear this news. Upon hearing your news my stomach turned and took me back to some of my own sad days.


We lost my son Nathaniel at 22 weeks due to preterm labor In Sept 05. My daughter Ava was still born at 36 weeks in Oct/06. Autopsy for Ava concluded that there was a problem with the placenta, however it wasn't strong edivence. I was having non stress tests twice a week for weeks. I was on bedrest. I had countless ultrasounds. But I, too, could not protect her. No matter how much medical care I insisted upon, I couldn't make sure that my daughter was born healthy. I know how you feel. People will tell you that it isn't your fault, and perhaps way down inside you know that it isn't, but you still feel that way. I think it is normal to feel that way. You are a mother.


It took a while, but eventually I began to live my life as though I were in recovery. One day at a time. And I learned to accept the fact that I was the mother to children who have died. I so didn't want to be the poster child for all things tragic. But I am. And I am ok with that now.


The best advice I can give to you at this time is to surround yourself with people who love you. They want to share your burden. My cyber friends are the ones who got me through those dark days.


Thinking of you,


Mandy -- Mom to Lily and Noah, adopted from Guatemala in 08


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