My sweet Lily Belle came into this world at 2:49 PM, on September 6th, 2011, weighing just under five pounds. Upon her arrival, the nurses frantically took her away. Noticing that she was struggling to breathe, they called the NICU team and readied her for transport. I couldn't hold her, so instead, I held her tiny hand. Not even five minutes later, she was rushed into the NICU and, soon enough, I would be told of a virus that would change my whole world.
Two hours after her birth, I had a whole team of doctors walk into my room.
"What's wrong with her? What happened?"
There were no answers, only silence.
The infectious disease specialist soon spoke up and explained to me that my daughter had contracted a birth defect virus in-utero which caused her body to not produce enough platelets thereby creating a characteristic birth mark called "blueberry muffin spots" on her skin. It also caused her liver and spleen to be enlarged, pulmonary hypertension, and severe jaundice. They stated that a positive test result for the virus was in my records and then asked if I had been made aware. The problem was that I didn't know. My Ob/Gyn had tested me for it and I tested positive, yet I was never told.
I never knew about Cytomegalovirus. Instead, I kept hearing all of the medical staff repeating the same letters “CMV” and it seemed like a foreign language to me. I instantly became filled with anger and wanted to know why I was never told, but I realized that it didn't matter. I just wanted to know what was going on with my baby. They explained to me that she had calcifications in the left lobe of her brain and that, later on in life, she could be disabled and maybe even deaf. Having to listen to the fact that my baby wouldn't be healthy and that there would be nothing I could do about it was just too much for me to handle. They soon left and I requested time alone.
I cried for my sweet child. It just wasn't right. How could this happen? How could they not tell me? I know they said that it wasn't my fault, but what if I could have somehow prevented this? Immediately, all of these thoughts came to an abrupt halt.
"It doesn't matter why this happened. All that matters is that she's your daughter and that you love her. All you can do is know that even if she is disabled or deaf or even blind, that she is perfect just the way she is. God sent her to you because she needed you to be her mother.”
This thought wasn't my thought. It was God.
Two hours later, I was able to see my baby in the NICU, however, I didn't get to hold her for another couple of days. The worst feeling I have ever felt in my life was walking out of that hospital without her in my arms. Every mother dreams of that moment when she finally gets to take her baby home and for Lily and I, that just wasn't going to happen yet. For seven weeks, I drove to that hospital two to three times a day. We went through constant tests, including MRI’s, spinal taps, advanced hearing tests that determined her to be completely deaf in her left ear, CBC’s every 12 hours, transfusions almost every day, suck-swallow tests to check for aspiration, sonograms on her liver, spleen, and brain, liver function tests every week along with ammonia level tests, and so much more. It was brutal, but when the day came for us to finally come home, it was wonderful.
Soon after that, Lily and I would be visiting eighteen specialists a month. During this time, Lily would be diagnosed with stage four liver disease caused by the CMV. It wasn’t until we got to the liver specialist in Dallas that we had found out that she was unable to have a liver transplant, due to the CMV still being active within her body. Defeated at the thought that her liver would be untreatable, we took her home and continued her care. Lily would have to be hospitalized several more times for various infections and to treat the secondary symptoms that would occur due to her enlarged liver. However, there would be one last hospital visit. Lily, within her last weeks, began experiencing pain, had to be placed in hospice, and would stop breathing in her sleep at various times.
In the hospital, we soon came to the realization that Lily was dying. She was so sedated from the pain medications that she rarely woke up and rarely smiled and I immediately began to regret that I had not picked her up to hold her the last time that she smiled at me.
On January 8th, 2012, at 6:10 AM, CMV took my daughter’s life. CMV stole any opportunity for my daughter to be an older sister to her two little brothers. CMV stole my future with her. Forever missing my daughter, I will continue to raise awareness of this virus so that other families may be saved from the experience of having to bury their own child.
I always told God, even during my pregnancy, that if he was ever going to take my baby from me that all I asked for was just five minutes to let her know that I loved her and then he could take her.
God gave me so much more than five minutes. He gave me four months and two days and I will be forever thankful to him for that.
One day, I will hold my daughter again, but until then, I will carry on her legacy. Lily Lives.
--Shared by her mother, Briar
Posted: 12/13/2015 1:24:06 PM