Mom to Grace Elizabeth 

February 23, 2011

Shelbyville, KY

So this is mine and my husband’s first child. We were so excited to find out that I was pregnant. I found out when I was 18 that I have endometriosis and it would be difficult for me to get pregnant. So at the time I wasn’t seeing anyone seriously and I went on the Depo shot for birth control. Well then I met my husband and a little over a year later we were married and I stopped taking the depo shot that I had been on for a little over 2 yrs. About 6 months into the marriage we were trying to get pregnant but no luck. So we were getting ready to go talk to a doctor after it had been a yr and no luck. Then I found out I was pregnant.

We were so happy that we drove down to Kentucky that day and told his parents they were gonna be grandparents. Everyone was so excited for us!! We started seeing a doctor and everything was going so smoothly. Then we brought up the fact that my husband’s father and uncle have hemochromatosis. So my doctor wanted us to go see a genetic doctor just to make sure everything would be ok with our little one.  SO we had the appointment set for Dec. 16th 2010 and we were also gonna be having an ultrasound. So we would be seeing out little one for the first time.

We were so excited that we even brought my mother along for the appointment. We get there and they take us back to the room and start the ultrasound. The nurse gave me a weird look and then asked me if my water had broken at all. I responded no so then she said well your baby has like no amniotic fluid around it. So she was like I am gonna go grab the doctor and I’ll be right back. She came back with not only the doctor but also the counselor lady. The doctor started looking around and noticed the absence of amniotic fluid, kidneys, and kidney arteries. He then looked at us and told us that our baby has potter’s syndrome bilateral renal agenesis.

I lost it from there. I couldn’t talk at all and neither could my husband. Lucky we had my mother there to talk and ask all the questions. We left the doctor’s office and we proceeded to call his family to let them know. All I could do was cry because I didn’t understand what we had been told. This all happened the week before my birthday and Christmas. I was so depressed that I didn’t want to celebrate anything because I wasn’t gonna get what i wanted. All I wanted was for my baby to be healthy and survive. So we called my regular doctor and asked them to send us to someone else for a second opinion. They found one for us to go to and it was Dec 23rd 2010. We went and saw him and he saw the same thing except that he also told us that there was no bladder or urinary tract. So we found out that our baby has full blown potter’s syndrome. I’m still in so much shock from all this. I feel like everything is my fault and I know it’s not. I’m glad I found this support group because I really need it. My husband and I live with my parents but my husband works nights so I don’t have him here when I really need him.

I know it has been awhile since I have been on here but every time I would go to get on here I would be a wreck. So I wanted to give everyone an update on everything. Well we made it to 25 weeks and we lost our little angel on Feb. 23rd 2011. I knew something was wrong the week prior. She had quit moving and she had been real active. I had called the doctor and they said that sometimes that they just get into a position that they can’t move at all. So they said just stay with my appointment for that following Monday. That whole week I was freaked out. That Monday we went in and they couldn’t find the heartbeat. So they sent me for an ultrasound and they confirmed that she was gone. So we went back to the doctor’s office and we discussed our options. We then decided that on Tuesday the 22nd we would go in and they would induce me for labor. We called family and told them. Chris’s mom would come up that Tuesday to be with us. We went in the hospital Tuesday evening and they started everything. My parents were there and Chris’s mom. Wednesday at about 10 or so I got sick and threw up. The nurses cleaned me up and while they were doing that I noticed that I felt something in between my legs. So I told them and they looked. She then said that the baby had some out so don’t move and I’ll be right back. She came back with other nurses and the doctor.

They took her and told me to push a little for the placenta and it came out all in one piece. I was such a wreck crying so hard because I wanted to experience labor. They took her away and gave her a bath and took pictures of her and all that. A few hours later they brought her back in and they had to literally put her in my arms. I was so scared to see her because they had told me that she had been gone a week. They put her in my arms and all I could do was cry. Chris was sitting right next me and holding me. I looked down and saw that she looked just like her daddy. She had his facial features but she had my strawberry blonde hair. It took me a minute to realize but she had an extra finger on each hand and an extra toe on each foot. So the doctor told us it was probably a good thing that she went this way because there was probably something else wrong with her. She was our special little angel. So we named her Grace Elizabeth Brown. She was 1lb 1.6oz and 10 1/2 inches long. So she was a lot bigger that what everyone thought. We had her in the room for a few hours then they put her back into a different room for the night. The next day we held her for a little bit longer and then we said our goodbyes and the funeral home came and got her.

We had her funeral on the 26th of Feb. It was mostly family and some friends. We had a family friend do her service and it was awesome. Afterwords we went to a little ice cream shop to gather and talk. Everything went smoothly and I wouldn’t change it for anything. It’s been 5 months now and I still catch myself thinking that I am still pregnant or that I should wake up to her crying. There isn’t a minute that goes by were I don’t think about her. But I know that she is in good hands and God is taking care of her. I also know that she is looking down on us and watching over us.







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  1. I just saw you were clos and this is still pretty new. So sorry for your loss.i am here. I actually have lost more since my faces story. @illing

  2. Jessica, I am so sorry for the loss of your precious Grace. I have said a prayer for you that God would give you his comfort and that you would hold your daughter someday in heaven.

    • Jessica Brown says:

      Thanks Christine and Jamie. I hope that this is the hardest thing I ever have to deal with in my lifetime. It’s been 10 months now and I still think about her everyday.

  3. Jessica, I am so sorry for the loss of your daughter Grace. I also lost my daughter to Potter Sequence (She had multi-cystic kidney disease which led to Potter Sequence). She’s been in heaven since August 7th of this year. Reading your story brings back all the memories. Please feel free to contact me to talk. ( Grace will forever live in your heart and the hearts of family and friends.

  4. Angelina Guzman says:

    I am so sorry for your loss, Jessica. I hope that time has helped to heal pain of this experience. I thought you should know that polydactyly (extra fingers and toes) is genetic, but does NOT mean that there are other issues with your baby, so if you were to have another child (which you may have by now) it is very possible that they will have extra fingers and toes, but that is OK. Potter syndrome is terrible, and the form your little Grace had was incompatible with life. From the way you told your story, it doesn’t seem that your doctors explained that to you before you lost your baby. I wish you well <3

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