In memory of Faith Blue. Born on August 26th, 2022. Mama loves you.
In July of 2022 I went in for my 20 week anatomy appointment pregnant with my third baby girl. I lived in Cape Coral, Florida at this point. After my scan, I awaited my midwife to walk in and tell me that baby Faith was perfectly healthy. Instead, she came in and sat down and with a soft voice told me that something was wrong with my baby that she had never seen before. There was some kind of "mass" growing from her. She also had severe amounts of fluid in her stomach putting her over the 99% percentile in abdomen size. I was alone and my heart dropped.
A few days later after calling Maternal Fetal Medicine, and trying to get in, they prioritized my case as there was a 2 month wait to be seen there. After my scan at MFM the Dr took me back and told me the worst things you could imagine. He told me she was very sick with Fetal Hydrops, and he believed there was a tumor growing from her tailbone which he had only seen once in his lifetime as a Dr. This was called a "Sacrococcygeal Teratoma" or SCT which is a word I have grown to hate with every bone in my body. This was a type II highly vascular tumor with both external and internal parts. My Dr told me my baby girl would most likely die inside me within a week and gave me the options.
1) Fly out of Florida (where it's illegal for abortions this late) and abort her in another state
2) Let her die inside me and eventually have her taken out
3) Fight for her
He called a guy he knew in Orlando, FL about 3 hours from where I lived with my other 2 girls. A Dr had just joined the MFM practice who had experience with these same tumors from his time in Kansas City. They wanted me there that night. I told them I had a 2 and 4 year old at home and I had to go and pack my bags and kiss my babies good bye. I share custody with dad and he would keep them while I left for the hospital in Orlando. When I got to Orlando MFM the next morning, I met with a man who would ultimately change my life. Dr Emanuel Vlastos. He was the first Dr I had met so far who could actually explain what was happening to my baby without deathly scaring me. He also told me I was displaying symptoms of Mirror Syndrome and beginning to swell like my baby was inside me. He wanted to admit me right away to "Winnie Palmer Hospital for Children and Babies".
I got admitted and was put on the top floor (11th) where I would be while they figured out how they could help us. I had an MRI done so they could better see the tumor and then ultrasounds and blood test. The tumor was growing from her coccyx or tailbone. The tumor was already the size of Faith at only 21 weeks. It was one of the worst kinds, mostly vascular. It was taking so much blood from her tiny body and making her heart work 10 x as hard as it should which would ultimately lead to her heart failure.
For a week the Dr's talked and did a conference together. They put choices on the table for me.
1) Open Utero surgery where she would most likely die or put me into labor shortly after
2) Let her pass
3) Try a new method that had never been done before
Again, I went with #3 and decided I wanted to be the first to have a microwave ablation done through my uterus and into the babies tumor. I was scared at this point, so terrified. I had left my own two girls 3 hours away to try to fight for Faith's life, and was even scared for mine. I wanted to be brave and safe. They told me there was minimal risk for this procedure and it was the only option I felt safe doing at this point. For days the Dr's prepared for this and specialists flew in from Georgia who were experts with the Microwave Ablation machine.
The day came and they wheeled me down. They were using a CT Scan to place the tool and ultrasound at the same time. I walked into the small CT room and there were probably 15 people including Dr's, Anesthesiologist, Nurses, Specialists, etc. Dr Vlastos was there and explained everything they were going to do. I laid in the CT scan platform and they gave me a concoction in my IV where I would be awake but not feel much of the procedure. The sweet anesthesiologist let me use her air pods to play music through the hour procedure (which is something I will never forget). I was in and out but I DID feel the tool puncture through my uterus even with all the medicine. I came out of my daze and it was done. They successfully burned the main arteries in the tumor causing it to pause growth! It gave Faith a chance, which is all I prayed for. Everyone was cheering and hugging.
Pictured Above: A photo of my amazing Dr's after our successful procedure
A few days later, my water broke in my hospital bed. I woke up and there was so much blood. I cried for the nurse as I was terrified. They told me this "might happen" since they did put a hole in my uterus. Ultrasounds showed everything was okay and my water did in fact break. This meant not going home for me. At this point I had been away for 2 weeks and I had not seen my two babies back at home. Keep trying Lexi... You got this.
Pictured above: Me with pictures of my daughters
We monitored my sweet Faith constantly, doing Fetal Echos and U/S's every other day. Her hydrops reversed and her heart was relieved from the tumor having some of the arteries destroyed. I felt hope for the first time and so did every one else. If all went well and I could make it further down the road, she would have a chance to be born, have the tumor removal surgery and begin her recovery in the NICU. I joined the one group on Facebook for these SCT's and started reading stories. Most stories were happy, and these SCT babies were fine after tumor removal. I had a lot of hope at this point. But my story was happening at much earlier weeks then these families I read about, and my babies tumor was so vascular (in which most were not). Faith literally had the worst possible prognosis for this tumor and had such a tiny chance. I was hopeful though, because I had Faith in my little girl.
At 25 weeks and 6 days pregnant (4 weeks after the procedure) her fetal ECHO showed her heart drastically changed and she was in danger. Her heart was pumping x 10 and her hydrops came back full force. There was fluid around her brain, her heart, her stomach, and one kidney completely shut down from the tumor pushing on it. The Dr's all sat down and decided it was time to get her out at this point.
I was so terrified the night before my c-section surgery. I imagined the worst, and then the best case scenario.
I was wheeled down to the OR where I was prepped for my surgery. They brought me into the bright room that I knew too well from my past 2 c sections. But this one was different.. They would be cutting me vertically because she was sitting on top of her tumor and they did not want to pull on it or rupture it. Keep in mind, she is only 26 weeks at this point.
The anesthesiologist got my Spinal in and I had a reaction and almost passed out. They did my heart rate and blood pressure dropped. This had never happened to me before and I was thinking the worst at this point. They laid me back and put the curtain up so I could no longer see myself from the chest down. A flood of Drs came in.. everyone was talking and rushing around. I laid there, numb and stared up into the lights thinking about what was about to happen. Dr. Vlastos started cutting and he talked me through it. They had to go further than expected up and under my ribs because she was placed so high up. He took out my baby.
I waited, I would have expected to hear a cry. Just silence. They quickly flashed Faith to me and the NICU team started trying to get a breathing tube into her. Maybe 15 minutes went by and the NICU nurse informed me they were trying their best, but my Faith wasn't doing well. Another 15 minutes went by as I laid there knowing what was about to happen. The NICU doctor told me she was not tolerating the tube and she was suffering at this point. I gave them permission to give her morphine. They wrapped her up in a baby blanket and let her pass on my chest as I stroked her warm soft cheeks. At some point these let me see the tumor that was attached to her tailbone. It was horrific. It was something no one should ever see on their child. It completely enveloped her butt, and there was just blood draining from it while wrapped. The Dr's were quiet, and the room was still. I knew that at that moment everyone who had been rooting for her, their hearts broke too.
My baby girl died. A tumor took her life. A tumor that happens to 1 in 40,000 babies.
I spent that night holding her, taking some pictures to remember her. I stroked and kissed her. This was a pain that is indescribable.
My stomach was cut ten inches up and down. I was in physical pain, but my heart was ripped from my chest. It was not fair. It's not fair. Why did my baby have to suffer and die? There was no cause. It just "happens".
My baby died from a rare birth defect.
She took her last breaths on my chest.
Pictured: My sweet baby girl & I that night
I live with my newfound grief and it's so raw. It's heart wrenching.
Some days are okay, and some aren't. I miss you.
Pictured: Faith Melissa Blue born on 08/26/22
Pictured above: The SCT tumor types
Pictured above: An u/s of my sweet Faith
Pictured: The tumor (still attached to Faith)
Praying for you today. You did everything you could to save Faith. Please don't go on blaming yourself. You were the mum she needed till the very end. May she rest in peace x
Thank you so much for your words
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