Hello! My name is Angela. I am a mother to two beautiful girls. Avery who is 3 and Elise who turned 2 April 8th. Elise is my cCMV baby.
I had never heard of CMV before. I was a nanny, so I was around children a lot, as well as having my first daughter who was a toddler when I became pregnant with Elise. My OB, or any other doctor for that matter, did not mention or screen me for CMV to see if I had been exposed in the past. I assumed I was since I had been nannying for over 10 years; it is likely I would have been exposed but I never had any blood work done so I will never know if my infection with Elise was primary or a reactivation.
April 11, 2019 was a bittersweet day for me. It was the day we found out that Elise tested positive for congenital CMV at 3 days old. I will never forget seeing the on-call pediatrician coming back into the room just a little while after she already did her morning check-in. I wondered why she was coming back in and grabbing a chair to sit down. I had the biggest pit in my stomach. I was holding my sweet Elise, all snuggled up on my chest, when she delivered the life changing news. I held Elise tight, right against my heart, and tears poured down my face onto her little body.
I was flooded with anger, sadness, worry, guilt, and many questions as the doctor talked to us. It was a lot, and we didn’t fully understand exactly what it meant.
Rewind to two days before when the nurse casually brought her back into the room after her hearing test and said she referred on her right side. She said it was very common, especially with c-section babies. They attached a little bag in her diaper to collect urine to test for CMV. In NY, the law had just passed in January that any baby who doesn’t pass their hearing test gets tested for this virus. She said not to worry, many babies have been tested and they all have come back negative. Elise didn’t “look” like a cCMV baby so she reassured that it should all be fine. I inquired about what CMV was (because I had never heard of it in my life) and she gave me a BRIEF (and I mean brief) explanation that it can cause hearing loss and some other delays but whatever I do, don’t google it.
Well clearly, I googled it right away and my heart started racing. CMV, a common cold virus that most of us have already been exposed to however, that if contracted for the first-time during pregnancy, can cause permanent, life debilitating conditions in your unborn child. Me having a toddler already at home and being a nanny, it was very possible that I had been exposed before. But I did share my food and drinks and utensils with my older daughter Avery. I was feeling a little under the weather a month before Elise was born but I thought it was just pregnancy. CMV during pregnancy can cause a multitude of problems for the fetus- mainly hearing loss but also intellectual disability, vision problems, seizures, lack of coordination, cerebral palsy, and more.
At this point I was telling my husband everything I was finding out and was just absolutely floored I had never heard of this before. He told me not to worry just yet and stop reading since we didn’t even have the results.
A part of me, deep down already knew it was positive. I just had a feeling. They kept testing her hearing, but she kept referring on the right side.
When the doctor delivered the news my head was spinning and I felt like I failed my daughter. What if I was more careful, what if I knew about this, could I have prevented it, what if I didn’t share stuff with Avery or was extra careful after diaper changes to make sure to wash my hands longer? The “what ifs” spun around and around.
What kind of life will she lead? What problems will she face? Will she talk or walk? We were being thrown so much information- she may have vision problems, developmental delays, permanent hearing loss that can continue to deteriorate over time, she could have CP, etc. I was overwhelmed.
I felt robbed of this precious time with her because she was just born and I just wanted to soak in our newest bundle but instead I was emotional and sad, filled with so much anxiety. Elise would need to see an infectious disease doctor, audiologist to check the true hearing, ophthalmologist, ENT, schedule an MRI to check her ears and a quick image of her brain. The days and months to follow were hard. Her first audiologist appointment I remember her telling me the news that she didn’t respond to any sounds on her right side but normal on her left and I broke down all over again. I couldn’t even focus on the great news of her having normal hearing in one ear because she could lose that too.
Those days and weeks were dark. It was so stressful but amid all of the darkness that I felt surrounded by, we kept receiving some really good news. The heavy clouds that I felt surrounded me started to fade and I started to switch my focus. Instead of focusing on the negative I wanted to be extremely grateful for the positives. Her vision was good, her MRI came back good, her ears were clear, and she still had good hearing on her left. I praised God for all those blessings. We still didn’t know if she would crawl or walk or babble but with each smile she gave, it melted my heart. I soaked in ALL of her.
We opted to do the antivirals for six months. Not knowing if it will help, cause horrible side effects, or cause problems later on in her life. We decided that we wanted to know we tried everything we possibly could to preserve her hearing. The next couple months were filled with appointments and each hearing test stung a little more because I hoped her hearing would come back. I was praying for a miracle. But I soon realized Elise herself was our miracle. Our precious gift from God who already at a few months old beat many odds.
As the months passed and she smiled, laughed, rolled over, started to babble, crawled, said dada... my heart exploded with gratitude. God has always been in control. Yes of course I would love a miracle. I would love her to have hearing back, to know she would never lose hearing on her left side, or that she won’t have any speech issues. But that little baby hooked up to all those wires for her hearing test in the hospital when she was just born to the baby at 1 years old has come so far. She is our warrior, she has hit milestones, her smile brightens up a room, and her laugh is a beautiful contagious melody. No matter what happens I savor every time she looks at me when I call her name, every little babble and noise she makes, every time she turns to noises in the other room, her interactions and playfulness with her big sister, and every milestone she continues to hit. The future is unclear, but I am incredibly blessed and grateful for this angel God has given to us. He has never left my side even when I have doubted him and my faith. He has opened my heart and mind to see the greater good that is all around me. He lifted me up with positive messages from family and friends. I treasure all these precious moments and the many miracles surrounding Elise.
At 2 years old Elise is living life like a normal toddler, something we never knew would happen. She is talking, singing, dancing, playing, and learning every day. She continues to receive speech once a week. She may need some physical therapy to help straighten her right foot that seems to turn inward when walking.
The best advice another cCMV mom said to me when Elise was first born was to enjoy every moment because she regretted wasting the first year being so worried and not enjoying the precious baby phase. It goes by fast. I really took that advice to heart. I enjoyed the snuggles so much, I enjoyed bath time, her sister holding her, little sounds and movements. I tried to take it all in and savor those moments.
“For I know that plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”
There will be hard days and there will be brighter days. On the brighter days I rejoice with you and good news and on the harder days I pray for your strength to get you through the storm. Even with everything going on in our world right now I have been strongly attracted to saying, “After every storm there is always a rainbow”. I have held onto that and hope that other CMV parents can find peace in your journey wherever it may lead. There is no mistake in this plan for you. It may not be the one you had envisioned but it is your story. Choose hope, choose to be positive, and choose to never stop fighting your fight.
- Shared by her mother, Angela