This is the story of my daughter who was born July 28, 2015 with congenital CMV.
My name is Brigid. I will turn 1 on July 28th. It's been a long year. And quite a fight to get here. Let me tell you my story. The day I made my arrival my mom went to the OB's after questioning whether she felt less movement in the previous days. (This had happened a couple years back when she was pregnant with my sister, so she was confident everything would be fine. Plus, she had an ultrasound only 5 days before that was read as completely "normal". They even said I had a "big fat baby belly".) The visit that day didn't go so well. After many attempts, they still couldn't find my heartbeat. The OB said she was very very concerned as she walked my mom up to the ultrasound suite. Mom was numb. She couldn't believe this could happen. She was nearly 32 weeks along. This pregnancy had been so smooth. Thank god they were able to find a heartbeat on ultrasound, but I was showing signs of distress.
I was born a couple hours later via emergency c-section and was critically ill. I was intubated and required transfusions of platelets and RBC's for weeks. Turns out my "big baby belly" was ascites and a very enlarged liver and spleen. Three days later the doctors sat down with my parents and told them I had been diagnosed with cytomegalovirus. My mom felt completely numb again. She hadn't remembered feeling sick during pregnancy. She had felt the most tired she'd ever felt in her life a few weeks before I was born, but just figured she was pregnant, had a toddler and wasn't getting any younger. The irony is, she had been working in a hospital and had talked to her OB (during both pregnancies) to find out what types of patients she needed to be careful to work with. This is how she first learned of CMV. She also knew that CMV is very common in toddlers. And I have a big sister at home. So my mom took extra precautions both at work and home. How could this have happened?
I spent 79 days in the NICU. I also battled for my life again about 2 weeks into my stay when I had an enterobacter sepsis. I rallied from that too. Through that stay we found out that CMV stole some of my hearing and it also caused some calcifications on my brain. The doctors said time would tell and I would show them what I can do. The plan was to keep me on valganciclovir for 8 months (since I was 2 months early arriving). When I went home, my liver and spleen were still very effected. The doctors said this typically takes time to resolve. Well, that wasn't the case and in December my liver functions worsened. A biopsy revealed extensive scaring and my parents were told I would not survive unless I had a transplant. I continued to rapidly decline at home. I was brought to the ED on New Year's Day, right after I was baptized. My liver was failing. It was clear there wasn't much time. On Jan. 4th I was listed for transplant and on the Jan 9 my parents received a call. An angel was about to save my life.
I rallied through surgery and spent 39 days at Children's Hospital in Boston recovering. My determination and spirit shined through again. Now I am home and finally thriving. (My mom gets nervous saying that, because I have been through so much!) I am so busy with all my therapies and appointments. Right before my transplant they discovered that my nasty CMV had decided to become resistant to the valganciclovir. This meant I had to get a PICC line in my arm and be placed on foscarnet which my parents administer daily at home. The plan now needed to be reset and I was to be on this medication for at least 6 months after my transplant. Because, now I get to see the multiple faces of CMV. The CMV that tries to harm babies infected in utero and the CMV that will try to take advantage of a person on immunosuppression. So, I will keep fighting...
Now... my mom has a few things to share. Here it goes: I must be honest, it took many months for me to be able to start to view some of the CMV sights. Having been (one of what seems to be very few) moms who knew about congenital CMV during my pregnancies, it caused me much angst and guilt every time I read that CMV is preventable if woman are educated. As months have passed, I have turned to these sites more, finding strength in others' stories. I'm in awe at what so many of these babies are able to endure. Each child and their family has an amazing story to tell. Many days I'm still in complete disbelief this happened. In my case, the knowledge and the precautions I took against CMV were still not enough. Now I'm left with thoughts of how could this have happened? And "what if?". "What if....." I sang the entire 2 verses of happy birthday EVERY time I washed my hands, even when I was in a rush? "What if" I had kissed my toddler on the head, not the lips or cheek, EVERY single time? "What if" I had decided not to cuddle with my daughter that night when she was ill with a runny nose and was coughing and sneezing and probably had a fever? I can say I'm sure I didn't have thoughts of CMV and "what if" on my mind that night, because in that moment in time a little girl needed her mommy..."What if?"... Seconds in time that passed in a blink of an eye have been replayed over and over with thoughts of "what if" and how could this have happened? I remember clearly weeks after Brigid was born when she was still in the NICU. My older daughter drank from my glass of water and my first reaction was "don't drink from that glass now". It quickly dawned on me..it's over now...it's too late. I thought about CMV throughout my pregnancy. I added CMV precautions to the list of other things I would do in an attempt to protect my unborn child... no undercooked meats, unpasteurized cheeses, etc. etc. But I did not go through every moment of my pregnancy with CMV plaguing my thoughts and dictating my every action. There was that week where I was more worried about the patient I had seen days earlier who was now in isolation for rule of of tuberculosis. I'm sure that week, CMV took a backseat in my mind. But at the end of the day, I didn't do it. I didn't spare my child from CMV. And I will never have my answer to all of the "what ifs". All I know is at some point, there was an imperfect moment in time. Each day I try to move on little by little. And every day i see an amazing little girl's life unfolding before me. A fighter. A miracle. A light that shines through. I look at her smile and the twinkle in her eyes. There is a spirit of hope and determination and resilience. I see this everyday and it gives me strength. I am so very grateful she is here with us. She, along with all of the children who's stories are told here, inspire me and show me the true meaning of life. I hear the call for education and awareness. But I personally, hope and pray to God that one day soon there will be a VACCINATION to stop CMV. I think we need a vaccination. At least my child did, because I wasn't able to spare her. And... maybe it will mean that even just one other baby and mother will be forgiven the sequelae of an imperfect moment in timeto ... me, that would be so very worth it.
- Shared by her mother, Melissa
Posted: 7/12/2016 7:25:04 PM