Serenity's Story, by her Mama

Written by Nicole Fox

She was perfect. Looking at her you would never guess anything was wrong with her. She had jet black hair, porcelain doll skin. She had all her little fingers and toes. She was so innocent and beautiful. 

Then why did doctors say she was “incompatible with life”? This is something I will still never understand. 

At 12 weeks gestation our lives changed forever. We went in for a regular ultrasound to find out our little baby had something wrong. The Dr just said "there is a rare sack around your baby" and left us with that

Then sent us to a specialist, in a different city. We did blood tests because our baby had something called cystic hygroma. Waited for the results for about 5 days and the results came back our baby had Trisomy 18 aka Edwards syndrome. They sent me back to my regular ob to go over the blood tests. When the Dr walked in he started giving me prices of abortions saying basically that was my only option. I had already researched Trisomy 18 before I showed up to my appointment. So I had to cut him short I said "sir abortion isn’t an option I am carrying this baby as long as I can". He then laughed at me saying “you know your baby won’t be pretty”. I couldn't believe what I had heard come out of his mouth. I just shook my head at him and said well this is my baby and will be beautiful to me. He didn’t even tell me if my baby was a boy or a girl I had to ask for my paper work and look it up myself. 

Well, we were having a little girl!

From that day forward our lives were completely different. Each week the Doctors said I would lose my daughter by the next week and I wasn’t going to carry her to term.

We came up with her name naming her Serenity Hope. Meaning peacefully never giving up. Serenity was already a fighter and began to prove so many people wrong. At 19 weeks we learned Serenity had a very bad heart defect called HLHS. Her left side of her heart didn’t work. I wanted to do a full intervention when she was born but with her heart no one was willing to do surgery. There wasn’t a case where any Dr opted to do surgery on a trisomy 18 baby with hlhs it was just impossible to find anyone willing to help. So we started making a care plan for comfort care. We didn’t want Serenity to suffer but feel all our love. Still Doctors said I was definitely not going to carry her to full term especially now with her heart defect. My ob referred my daughter as the “trisomy baby" and not by her name. She stated many times she wouldn’t give me a c section because my "trisomy baby" was going to die anyway. Serenity was breech and I wanted to do anything so I can spend some time with her. The hospital in my home town was nasty. Around 29 weeks I was bleeding so I rushed to the hospital. I had already registered so I thought they were all on board.

Well that was an understatement. They treated me so badly making it seem I was lying about her diagnosis and I was just a drug addict. I left the hospital in tears I did not want to have my daughter in place where they weren't going to care for me or her. I had to change hospitals. I called my specialist in the other city to see what he can do for me. He switched me to a wonderful caring team who actually seemed very interested in Serenity and I. The Dr actually called her by her name. I even met with the whole NICU staff and they were all for my care plan and even said we could possibly do an intervention if they tested her and she didn’t have HLHS. 

In the meantime we loved and did so much with our girl. We got maternity pictures done twice. We took her to the Denver Zoo, a Broncos game, a zombie walk. Serenity had a busy life. She was spoiled with love and food. Ha-ha my girl loved cakes and Pepsi. She already had such a personality she kicked when she didn’t like something and would kick when she did. I played music for her and we had our own songs.

Matt Hammit's All Of Me was our favorite. Also she was a fan of Tupac….man this child. We had a shower and played games and even had a butterfly cake made for her. I was already 38 weeks so we set a date to induce. They were amazed on how strong my little girl actually was. We set a date around 40 weeks to go have her. Her heartbeat was so strong so we thought everything was okay. We went in the evening to start the prep of inducing. We first did an ultrasound to see if she was breech and she was so Dr scheduled a c section the fallowing morning. 

It was time to hook me up to all the machines. They hooked me up to the machines but we sadly couldn’t find her heartbeat. We tried for about 40 minutes but there was not one. They did another ultrasound and our angels fight had stopped. I was in shock I couldn’t believe it. She just had a heartbeat that morning and it was at 150. I thought I still felt her moving. I have to say that was the longest night of my life. I didn’t sleep. I was amazed though because she did something no one thought she would she made it to TERM. I had her September 15, 2014 three days shy of 40 weeks.

She was beautiful and born peacefully sleeping. She was 4 lbs 7 oz, and full of love. She was an angel I got to love and hold an angel. 

The hospital was so awesome and let me spend three beautiful days with Serenity. We took lots of pictures and cherished every second we had. I am going to leave this as a death of a child definitely changes everything you thought was going to be. 6 months later and I grieve every second of every day. Serenity’s dad and I no longer speak. And he was my middle school sweet heart. Death changes a person. I have seen him maybe a handful of times since her funeral. I know we all grieve different but it has torn us apart. Family I once talked to on a daily basis we don’t speak anymore and it kills me. I never thought my life would be where it is at now. My life is forever changed. 

All I know is I won’t ever stop loving my daughter - may I add she was our first baby. I will keep her memory alive until the day I die. 

Thanks for letting me share Serenity’s Journey. March is Trisomy awareness month so please go blue for Serenity Hope and on March 18 I wore purple in her honor.