Friday, April 17, 2015

Emily's Story, by her Mama

written by Brittany Thomas

I found out I was pregnant with our second child on July 7, 2014. It wasn’t really a shock for my husband and me, because I had no problems getting pregnant with our son a month after stopping my birth control. I was already considered high risk because I had pre-eclampsia with my son. So I was going to regular appointments. At first we thought I was having a routine pregnancy. At every ultrasound, the baby was growing as it should have been. 

At sixteen weeks, we found out it was a little girl, our little Emily Claire! I was over the moon excited. However, the happiness was short lived. 

The maternal AFP signaled that I was high risk for Trisomy 18. My world stopped turning when I heard my ob say the words “incompatible with life”. However, I had already decided that I would continue on with the pregnancy. I remember saying to my husband “terminating the pregnancy wasn’t an option. She didn’t choose this. She was handed this deck of cards. She deserves every chance in the world to fight”. Further testing was done and it said the first test was wrong and she did not have Trisomy 18. My excitement came back!

At eighteen weeks, we thought everything was fine with her anatomy scan. The ultrasound tech seemed to be having a hard time finding all of the chambers of her heart. I didn’t think anything of it. My ob’s office does transvaginal ultrasounds to check the cervix and she chose to check the heart this way. She told me that we could check again at the next ultrasound. I went on my way came back for the next ultrasound. She didn’t say anything and I thought it was fine.

At twenty-nine weeks, I had my first non-stress test. She was non-reactive. The ultrasound tech told me that was due to her being so small. Since the test was non-reactive, I would have my first biophysical profile done. The tech that did this, kept having me get up and move around trying to get Emily to move around. She didn’t tell me at first what she was looking for. After the third time of getting up and walking around, she told me she was having a hard time visualizing all four chambers of her heart. All of the previous images she had taken had already been sent to the doctor. She left the room to go talk to the maternal fetal medicine specialist. After what seemed like an eternity the doctor entered the room.

He came in and told me that my daughter had a rare congenital heart defect called hypoplastic left heart syndrome (HLHS). He said that he didn’t know if it could be fixed but it was very serious. He also told me that she had fluid around her abdomen. I also had very high levels of amniotic fluid. He referred me to Cincinnati Children’s Hospital and University of Cincinnati Medical Center for further testing and care. From twenty-nine weeks to delivery, I practically lived at my home ob’s office and in Cincinnati.

At my first appointment in Cincinnati, more problems were discovered. At my first ultrasound, they found a congenital diaphragmatic hernia (CDH). The fear with this was that her stomach, liver, and intestines had encroached on her lungs and they weren’t fully developed. At this appointment we also compounded gestational diabetes on top of it. The maternal fetal medicine specialist wanted a fetal MRI done to get a better look at her heart, lungs, and diaphragm. Well this was an issue for me because I’m claustrophobic. But I knew it had to be done for my little girl.

After all the testing was said and done, we got the final diagnosis. HLHS, CDH, esophageal-trachea fistula, and possible scoliosis. But we were under the impression that what was wrong could be fixed. The hernia wasn’t a true hole, only weakened. This was good, because her lungs were able to fully develop. At this appointment, I was given the news that I would have to relocate to Cincinnati at thirty-six weeks in case I went into labor or something was wrong with her. During the intervening weeks, I went to appointment after appointment after appointment. 

With the proper diabetes medication, my fluid and her fluid were under control. She was also growing beautifully. There would be weeks where she wouldn’t cooperate for non-stress tests, but she always passed the biophysical profiles. When we relocated to Cincinnati, things would change. At her first non-stress test, she was non-reactive. No big deal. I had been there done that. But the tech was having problems getting her to move. My test took the entire half hour but she passed. At the next biophysical profile, she wasn’t reacting the way they wanted her too. She wasn’t moving and her heartrate was staying at a constant 150 bpm. The maternal fetal medicine specialist came in and told me and my mother that we would be having a baby that day, most likely within the hour. I begged them to wait so my husband could make it, but that wasn’t the case.

I was transported to labor and delivery, and from there everything happened so fast. I was changed, cleaned, IV placed, consents signed, and wheeled into the delivery room within fifteen minutes. I would go into surgery by myself. My mother was taking care of my son so she couldn’t be in there with me. Everyone was in high gear to get my spinal block in and Emily out. 

I remember them telling me to turn my head and look because she was out and they were taking her into another room. I kind of had a gut feeling then that something was wrong, she never cried. After what seemed like an eternity, I asked if anyone knew anything about my daughter. The nurse anesthetist went and checked and she came back and said all she could see was they had a breathing tube in her. There were too many people for her to see. 

A doctor came in a few minutes later, crying, and told me they weren’t able to save my daughter. They put a breathing tube in her, went to give her adrenaline to jump start her heart, and it came back out her mouth. Her heart never beat. After they cut the umbilical cord, she wasn’t able to survive on her own. She kept apologizing, but there was nothing that could be done. 

By the time I was wheeled out of the operating room, she was bathed and dressed and waiting for me to see her. I couldn’t do it until my husband got there. They allowed my mother and son to come back to my own recovery room and her face was blood red from crying. When my husband and father arrived, I finally asked them to bring my daughter in. She was absolutely beautiful. I never got to see her eyes, but she had a full head of brown hair.

My family and I would spend the next day and a half with her. She was changed into an outfit that I loved and a bow that was too big for her head. But she was absolutely perfect. We would hold her, cuddle her, rock her, and just bond with her.

The day I was discharged was the hardest. A geneticist would come in and tell me, just by looking at her, that my perfect daughter wasn’t perfect. He started listing off things wrong with my beautiful angel. Her eyes were too far apart, the bridge of her nose was too wide and flat, her fingers weren’t formed right, she didn’t have enough fingernails. The list went on and on. It was like putting a knife in my heart. He told me what testing would be done and how long it would take. After he left, I told my nurse I was ready to go home.

One of the hardest things I have ever done would be soon to follow. I had to change her into the typical hospital garb; the newborn beanie, white long sleeve shirt, diaper, and blanket, lay her in the bassinet, and leave her there. Never to see her in natural physical form again.

As of right now, we still aren’t sure what her cause of death was, other than the HLHS. I am hoping that we will be getting the results of the autopsy and genetic testing back soon. But no matter what they tell me, she will always be my perfect little girl. I wouldn’t have ended her life for any reason. She was alive inside of me. I will always treasure those little kicks and wiggles.

Fly high Emily Claire! You are loved and missed more than you will ever know.


Amie Spencer - Flowers said...

I'm so sorry for your loss. She is prefect. That geneticist needs to be shot.

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