Adelyn Rose Booth
From the start,
Growing up was hard for me, I have never been the one to have my real father in my life… My mom was my saving grace. Growing up, everyone had all these dreams of being doctors, lawyers, nurses- you name it. I wanted to be a mom- just like mine.
After high school, It all started to come down on me, Anxiety formed – and I was placed on Zoloft, for depression as well. My family wasn’t perfect, but the abuse from my father, and childhood traumas, along with relationship abuse which led to a baby at 19 that was a miscarriage – my body couldn’t take it anymore. I was overwhelmed, exhausted.
Fast forward- I met my husband around 22 years old. He was amazing, I was safe finally. We got married, and planned our life. We started trying for a baby. Our first baby was conceived in September 2022. Miscarried. Again. I knew something was wrong, but every test, every blood work screening was fine. Try Again.
December 2022 – We conceived again. This time was different, our little girl was perfect. She grew, passed every genetic screening, passed her anatomy test at 20 weeks- oh my heart was so happy.
Our “bomb” went off.
I started to notice at home our doppler sounded funny- I went to DCH northport in Northport, AL. They failed me – They couldn’t find her heart beat in the ER- so I was sent to L&D in which we had an ultrasound done. The Ultrasound tech was the one who confirmed her Heart Rate was 120 – and “she was fine” I never saw or heard from a Doctor at all. They sent me home- I knew in my heart something wasn’t right.
That following Monday – we went for a “fun” ultrasound to see our little girl. Her Heart Rate was 55. I was immediately sent to DCH Regional – where I was transported by Ambulance to UAB Birmingham. They confirmed our daughter was suffering from Congestive Heart Failure, and Hydrops Fetalis. They tested me for SSA & SSB antibodies – which came back positive. My antibodies attacked my daughter Heart. They gave her a 1% chance of survival – they sent me home with words I could never forget “Go home, she will die inside you, there is nothing we can do for her at 22 weeks”.
I couldn’t do it. I could not let her die. I found the Allo Hope Foundation (Bethany Weathersby) and she found us a doctor willing to help. The next Monday, We was on a plane to Austin, Texas. We met with Maternal Fetal Doctor, Kenneth Moise, and Fetal Cardiologist, Michael Liu, they had hope, and that’s all I wanted. Adelyn stayed alive inside me for 5 more weeks. Adelyn was 1%. But one thing UAB failed to tell me was mirror syndrome. Mirror Syndrome is what happens to mothers carrying a sick baby. Mothers body will start to mimic exactly what is happening to the baby. My body did just that. I was getting sick- my blood pressure was high, my labs were terrible, my heart rate was 120+ everyday, I couldn’t breathe, I felt like my lungs were filling with fluid. At 26 weeks, our ultrasound, Adelyn’s hydrops was getting worse, my placenta was backing up with fluid, making it twice the size it was supposed to be.
They called it, we needed to deliver. They wanted to do the impossible, they called Dr. Carlos Mery ( Fetal Cardiologist Surgeon) Adelyn needed to be delivered- be semi-healthy, have emergency open heart surgery, have an external pacemaker placed (leads attached to her heart, and paced from the outside), and live. She was delivered at 8:22am 2lbs 11oz 13inches long via C-Section on June 5th. She passed every exam, she went into Heart Surgery. This was successful.
Some more words were told to me that day, I could never forget “You are lucky, after examining your Placenta, another week of pregnancy- You and your daughter would not be here.”
We were told afterwards, this particular heart surgery has never been performed on a baby at 26 weeks, let alone be successful… in which hers was. I got to meet my daughter for the first time in the NICU at 1:00pm that afternoon.
Adelyn was a fighter, day after day- machines were being taken away from her body, medications were stopped, fluid was draining from the Hydrops, she held my finger, kicked her legs, and opened her eyes.
Day 7. A nurse missed her blood gas at 10:00am that morning, failed to report that Adelyn had not used the bathroom that day. This led to a Blood Gas being done at 4:20pm on June 12th. She was in acidosis. We stood in that hallway for 13 hours- nurses, doctors rushing around us- it felt like a movie. Around 7am that morning, I told my husband “She’s too tired”.
Adelyn passed on June 12th at 10:13am.
My heart died that day.
All the doctors wanted to talk about was me moving forward, how I needed to focus on myself, I needed to schedule appointments for my antibodies with a Rheumatologist, I needed to be scanned…. I couldn’t breathe.
We finally got home to Alabama. I went to my doctors. I found out I was negative for Lupus, Rheumatoid Arthritis, but I am Positive for Sjogren’s Syndrome. They told me, I can have a healthy baby on medication (Plaquenil + IVIG Treatments).
How do you process this? I fought for so long… on this question. When they tell you, your daughter would have been fine if I was on Medication. If I would’ve known, but how could I? I have no symptoms. No Rights for a doctor to have ever tested me for this disease because I presented completely healthy.
I went to Atlanta to a doctor, and felt like an experiment- wanting me to have ports placed in my Jugular Artery, and plasma replacements, in which I now know is not necessary.
I found my program, Stop- Bloq program at Vanderbilt Hospital in Nashville, TN. Where I will be monitored 3 times daily when pregnant again to insure top treatments. I found out I am more rare than we thought. I am now registered in the state of New York, with Dr. Jill Buyon providing my blood samples to try to find help for women with the same antibodies, but are positive for lupus. Since, I do not have symptoms, and do not have lupus. What does my body have that other women do not have, that is suffering with fatal symptoms. They want to figure this out to potentially save their life.
I started a charity for awareness (no money) just awareness, and resources for women with Heart babies (Adelyn’s Faith in Shadows), I continue to share our journey on our facebook page (Our Journey After Adelyn Rose). I have learned the process of Adoption, because I don’t know if my body will ever allow myself to go through this again, but I want to try, and be brave for her.
I still take my Zoloft, and I am started on the Plaquenil as needed for a potentially healthy baby in the future.
I thank God everyday for letting me meet my Daughter, letting me see her move, letting me hold her until her last breath. I thank God for the programs I am in today, the doctors I have met, the medications I have been given, and the opportunities that have been presented to us. Adelyn saved my life, she saved her future brothers, and sisters. I am thankful to be her mother. I am thankful for my support system, and therapist. I am thankful for each and every one of you for just reading our story.
If there is anything in this world I could change from my experience,
Doctors need to be aware of what is happening to women who are asymptomatic. These antibodies need to be a primary test upon becoming pregnant. Women need help mentally processing loss, and pregnancy in general. I am forever grateful for what you do to help women just like me, and women with post- partum.
every story matters
The Pregnancy & Infant Loss Support Centre is a non-profit registered charity that helps families connect to support on their path to healing after pregnancy or infant loss. Families like yours can work with us and get support with a variety of services that hold space for your unique story. No matter at what stage of your parenthood journey you find yourself, your story will be heard here.
If you are ready to share your story, or you need help with your journey, get in touch with us.