Issues

Mom of baby who lived five hours after birth: “She was compatible with life and love”

Copyright: Kari Williams

In late February, I found out I was expecting my second child. On March 21, 2014, I had my first ultrasound. I was 8 weeks pregnant. They told me everything looked good, so my next ultrasound wouldn’t be until June 13, 2014. That would be my 20-week ultrasound, and I would find out the gender of my baby then.

The day I had been anticipating had finally arrived.

I brought along my mom and my 3-year-old son to my gender ultrasound. We were called back into the room. The ultrasound began. It took the tech a few minutes, but she said: “Would you like to know what you’re having?”

I said YES in excitement. I had been praying for a girl because I already had my little boy. She said, “It’s a girl”.

I was so happy! We already had her name picked out. Marley Jane!

The tech then began to take measurements of my sweet Marley. She flipped over to the 3D side to let us see our baby’s face. I noticed she quickly flipped back to the normal screen that showed the profile shot of my baby. In my heart, I knew something was wrong when she did that. She started to tidy up her stuff, and she looked at me and said, “I have to tell you something.” I was devastated. My worst nightmare was about to happen.

She said, “There is something wrong with your baby.” She told me from her measurements and from what she noticed, my baby looked like she was missing her skull, and she wasn’t sure if all the baby’s brain was present.

I went numb. I think I was in so much shock I began to get lost in my thoughts. She said, “Let me go talk to the doctor so we can get you into a room right away.”

I remember all I could do was cry. I was looking at my mom saying, “What does this mean!? Is Marley going to be okay?” My mom was also crying, and I knew she couldn’t answer those questions for me.

I remember saying that I don’t care what this means. If she were to be born disabled I would take care of her because she is my child.

I had no clue what her diagnosis was yet, so I was optimistic she would be okay. I was in a room waiting for a doctor to come in. It felt like an eternity waiting there.

The doctor came in and she said “Have you ever heard of anencephaly?” My response was of course, “No.” She then explained what it meant.

I lost it. My worst fear was being told to me.

She then proceeded to tell me I should induce my pregnancy as soon as possible because I have had high blood pressure a few times with this pregnancy. I told her no way. I was going to carry my daughter to term just like I did my son. She told me I would have to go see a specialist to have another ultrasound done to confirm her diagnosis.

Marley Jane, baby with anencephaly

Five days later, I saw the specialist for my ultrasound. The medical team I went to was Maternal Fetal Medicine EVMS. After their ultrasound, they told me that Marley did in fact have all of her brain she just was missing her skull. They told me it was called Exencephaly. They told me there would be no issues carrying her to term if I wanted to go that route. Needless to say I switched over to their office for the rest of my pregnancy.

During a few of my normal doctor visits, they conducted ultrasounds and told me I had polyhydramnios. I had a lot of excess amniotic fluid because Marley wasn’t swallowing it.

September 12, 2014, they took me out of work because my poly had gotten bad. They told me I was at risk for preterm labor. I was heartbroken because I wanted to donate Marley’s heart valves. I spoke to LifeNet in Virginia where I live. LifeNet handles organ donations here, and they told me Marley’s heart valves could save two babies, but Marley would have to be 8lbs at birth to donate. I knew if I went into labor early, she would be too small to donate.

On September 19, 2014, my water started to leak. I wasn’t sure what was happening because with my son, I was induced at 40 weeks and 4 days, so my water had to be broken with him. I was only 34 weeks pregnant with Marley.

By September 23, my contractions had gotten worse. My mom took me to the hospital, and at 12pm I was admitted at 5cm dilated. I was so upset and couldn’t stop crying. I wasn’t ready for Marley to come. I wasn’t ready to say goodbye to my baby girl. I knew she would be too small to donate her heart valves, and they told me because she had anencephaly I couldn’t donate anything else.

I met a wonderful midwife at the hospital, and she heard about Marley’s condition and the fact that I was going to carry her no matter what. Her name was Wendy. She told me she wanted to be there when Marley was born. Her shift was going to end at 7pm that day, and she said she was going to stay no matter what.

Wendy was actually the one who delivered Marley. She came in and checked on me and told me it was time to push.

Three pushes, and at 5:58pm, Marley was here.

Wendy sang “Happy Birthday” to her, and then she laid her on my chest. She was so overjoyed that Marley was born alive.

She weighed 3lbs 10oz, and was 15 1/4 inches long. She was absolutely beautiful.

When I looked at my baby girl, I didn’t see anencephaly. I saw my beautiful perfect baby girl.

Marley Jane, baby with anencephaly

I had tons of family and friends in the room when she was born. Everyone held her and loved on her. She was cuddled and loved her entire life outside my womb. After everyone had left I was holding Marley and loving on her. I handed her to my mom and she laid her in the little hospital bassinet. The nurse checked her pulse, then walked out of the room to grab a doctor. The doctor came in with her stethoscope and listened to Marley’s chest. I will never forget she looked over at me and said, “I am so sorry, she’s gone.”

At 11:02pm, my daughter took her last breath. I cried till I couldn’t cry any more.

I kept Marley until 3 that morning, and I knew it was time to give her up. I didn’t want to remember her that way. The hardest thing I ever had to do was hand my baby girl over to the hospital.

Copyright: Kari Williams

Copyright: Kari Williams

The second hardest thing was having to leave the hospital the next day empty-handed.

My life is forever changed because of my little girl.

I since have created a Facebook Page to spread Marley’s story and awareness on Anencephaly. My hopes are to help other mothers dealing with similar situations. I want people to see that you don’t have to be scared into termination or inducing early because society deems your child imperfect and incompatible with life.

Marley was perfect, and she was compatible with life and love. She lived for 5 beautiful hours and I am blessed for that and blessed that I was chosen to be her mommy.

Kari Williams, Marley Jane

Editor’s Note: This article was first published at Anencephaly.info, and is reprinted here with permission of the author.

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