Potters Syndrome

Hello. My name is Valerie. I am starting this blog to document my experiences in losing two children to Potters Syndrome. I'm hoping to reach someone out there who has also lost a child to this, or has unfortunately just learned that their baby has Potters. I couldn't do group counseling... I was never ready and didn't think I could sit and tell my story without crying. Here is a place where I can talk and would love to meet other parents and hear about your Glory Babies, too.

This is my story. The day my life changed... the day my spirit went dark, saddened and was shattered forever.

My husband and I have six beautiful children, ages ranging from almost 3 to 24. Two of those children, our son Christian Daniel and our daughter Grace, died shortly after birth to Potters.

Christian is my fourth child, my 3rd son. He was born on March 10, 1998. I was in my 8th month of pregnancy. My Ob/gyn had delivered my 2 prior children and was in the process of retiring. He had given me the name of another Ob/gyn who was taking over his patients. My next visit was with this new doctor, to meet him, go over my history, etc. as I would be delivering soon.

I remember this day so vividly. He walked in to my room, shook my hand and asked "how far along are you?" I told him that I was due in just a few weeks. He shook his head.... he knew right away something was wrong.

Dr. Emerson, my previous doctor never caught it. My tummy was very small and each time I saw Dr. Emerson he pushed my due date back thinking I must not be as far along as he thought. He did ultrasounds... never caught the fact that I didn't have amniotic fluid. Was he in a hurry to retire? Did he never see the signs? I'm not sure. Not that it mattered because the outcome would have been the same.

My new doctor, after shaking his head in doubt, told me he wanted to do an ultrasound right now. I wasn't thinking anything about it... I had 3 healthy babies. Death or anything wrong with my son never entered my thoughts. I didn't know anybody who had lost a baby, other than to a miscarriage. No one ever in my family that I am aware of ever lost a baby.....

The doctor took me to the next room and started the ultrasound. He was quiet for about 10 minutes, just looking and looking. I sat there unknowing, watching my little baby move about and thinking about how anxious I was about holding him soon. He broke the silence.... "You don't have amniotic fluid"... I didn't understand. He said "Your son does not have kidneys". Then "those" words I will never forget... "Your son is not going to live".

I was in shock. I couldn't process what he was telling me. I remember thinking, what a jerk!" What a horrible man to be saying something like this to me. He left me in the room for a little while. When I was able to come out, he was flipping through a big technical doctor book to show me the word "Renal something" that's all I remember at that time. I started to cry and sat down. I still couldn't mentally grasp what had just happened. I'm expecting a new little boy... I go to a new doctor, I have no amniotic fluid, my son is missing this and that, he's not going to live, renal something or other... my head was spinning.

The doctor called Stanford University and scheduled an appt for a higher resolution ultrasound and an appt with the NeoNatal doctors there. My doctor knew what it was, but wanted Stanford to confirm it.

Our appointment at Stanford was scheduled the following day. I was hoping and praying my doctor was wrong, he had to be, this just didn't make sense to me. Unfortunately, we were told the same thing. We sat in the office with the Neo Specialist and were told that our baby boy did not have kidneys and his bladder had also shut down. Then he explained that Christian did not have lungs, that they could not develop due to the lack of fluid. I pleaded with them to do SOMETHING... kidney transplant, lung development machine, something. We were told that no baby has ever survived Potters, they've tried. But, if we wanted to try, they would do everything possible.

When I got home that evening, my new Ob called because he had received the results from Stanford. He said, "It was what I expected... why don't you come in, we'll induce the pregnancy and get it over with since he is going to die anyway". The second worst words I've ever heard in my life. I looked at my husband in disbelief of the words that just penatrated my soul and I dropped the phone to the floor. I wasn't going to induce and then say goodbye! I wanted him to continue to live inside me where he was safe and alive, kicking and hicupping away.

The next few days are a blur. I was in shock and was trying to fathom how to say goodbye to my son. I'm not sure how soon it was after that dr. appt that I went into labor but I think it was within a week.

I came down with the stomach flu. After half the night of throwing up, I started having contractions. They were so strong we went to the hospital and my new ob/gyn was called. I didn't want to be there and I didn't want the new doctor to deliver my son.  I begged to be flown to Stanford. They tried, but I was too far along and there was concern I would deliver in the helicopter. The wonderful staff from Stanford came to my hospital to deliver Christian.

My son entered this world crying. This gave all the doctors a glimmer of hope.... maybe there was enough lung development to work with a machine. After I heard his cry, a team of doctors swooped him up and away he went.

I was cared for and laid there wondering about my baby, afraid to know. The Stanford Doctor came in and told me that after looking at Xrays of his chest, there was nothing there. The lungs had not developed enough. The hopes of putting him on a development machine was not going to happen. She told me she would wheel me in so I could say goodbye.

I couldn't, I just cried. I couldn't go in there and say goodbye... HOW DOES A PERSON DO THAT!!  I remember being so afraid to see him and to see his face and have it hurt as much as I knew it would. She left to help with him again and returned a few minutes later. She was a very nice woman. I'll never forget her face and her loving soft voice she used to talk to me. She asked me again to please come see him. I just cried and told her how scared I was. She said "I know, but I want you to hold your baby while he is warm". 

They put me in a wheelchair... I remember going into the room and seeing my mom and sister. Tears and anguish covered their faces, machines and tubes were everywhere. My husband was sitting, crying, holding our baby boy. My son Christian, my baby was placed in my arms... and he looked up at me. His eyes staring into mine, blinking.

He had the sweetest little face. Just a beautiful, perfect tiny baby boy. Looking at him, you wouldn't think there was anything wrong. But inside, two major organs were absent and preventing him from staying with us. I will never forget his eyes...

I stared at him, felt his little body, looked at each of his fingers and toes. The doctors continued to check his heartbeat... his little blinks got longer and longer, until he didn't open them again. They removed the oxygen tubes and monitors and just let us hold him. They continued to listen to his heartbeat until, the last time they looked down and put their hands on our shoulders, we knew. He passed away in my arms.

Christian lived almost 2 hours. He weighed 5lbs-6oz and was 19 inches long.

He spent his life in his daddy's, aunt dottie's, grandma's and his mommy's arms. He was loved immensely and I know he felt it.