Tuesday, September 4, 2012

You Are a Child of the Universe

This photo was taken a week before our world came crashing down. 

We were on our first family vacation in Nags Head, NC and waiting the arrival of our 2nd baby due the day after Christmas 2012.  Life was grand, Robert was home from work travel and we had 2 healthy kids...so we thought. 

When we got back from vacation we went for our 20 week ultrasound on August 6th to find out the sex of the baby and put to rest the great circumcision debate Robert and I were having. The tech found something wrong, called in the doctor at the sonogram office who mentioned I had low fluid and called my midwife. At this point we didn't think much of it and waited for what to do next. The midwife sent me straight to a specialist in Annapolis to get a better look. It was at the specialists office they dropped the bomb. 

Bilateral Renal Agenesis, also known as Potters Syndrome. Our baby had no kidneys, nothing, not even a speck of a kidney. That is what was causing the low fluid. They told us it was "not compatible with life" and there was zero chance our baby would live. I could feel the baby move, it was most certainly alive. What happens with Potters Syndrome is that the placenta keeps the baby alive until birth. Once born, due to the lack of kidneys and no amniotic fluid the baby's lungs are underdeveloped and the baby will die. There is also greater chance the baby will die in the womb or during birth, but if born alive will live only a few hours. 

We were given two options, carry on or decide on an early induction and end the pregnancy. This has got to be the biggest mind fuck ever in the history of all mankind. My baby was alive, its heart and brain were all there and working perfectly, I was keeping it alive but when it is born it would die, and they were giving me the option to make it happen sooner. We went home and I cried myself sick and spent the next few days trying to figure out what to do. Ultimately we decided to let the baby decide how long he/she was going to live. It was not our place to decide to take this child's life. So now we wait and while we plan for a birth we are also planning for a death. We love this baby and we wanted this baby and we are going to give it all the love we can until it grows wings and flys away. 

Never in a million years could I have predicted this and I would not wish this kind of pain on anyone but I keep telling myself there is a reason, there has to be to all this, this baby will change our lives forever and perhaps the lives of others and for that it will all be worth it. 

I keep coming back to one of my favorite poems, Desiderata, and a line in it gives me great comfort:

"You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should."


  1. Dearest Diane,

    A mutual friend recently shared your traumatic story with me. I wanted to reach out to you and offer some support. And......after I read you your quote from Desiderata...I knew I had to reach out. It too is one of my favorite poems. I had this poem tacked to my wall in college because I loved it so much.

    9 years ago (jeez...feels like yesterday) I went for my 22 week ultrasound and found out that our sweet baby Jeremy had anencepholy. (a neoral tube defect) Jeremy's life expectancy was just a few hours after he was born...if that).

    I was strongly encouraged by my Dr. to deliver Jeremy around 26 weeks. He was the most beautiful little baby boy. All was perfect except his brain was not there.

    About 4 months after delivery, my Doctor told me that my husband and I could try to conceive again. Many people could not believe that I was emotionally ready but I proved them wrong. On our first try we conceived!!!!!! Today our sweet Jameson is 8 years old. He is our angel!

    If I can offer any advice it would be to just be with your pain. If you feel sad....cry....if your feel angry...know that that is ok too. I believe that God has everything planned out for us even if it is so very painful.

    Please know that I am praying for you and and your family and sending good vibes your way. I also wanted to let you know that I am here to offer an ear if you ever feel inclined to email or talk.

    Erin Aben


  2. What a beautiful reach-out from Erin.

    I share your philosophy and love the quote, too. The "biggest mind fuck ever" point is also appropriate.

  3. No words can change your circumstance or situation just wanted to tell you...what amazing people you are. Praying for strength for both of you. Thank you for sharing..sending prayers.