CMV Spotlight: Angela and Elise
Spotlight on CMV
Welcome to Sunshine and Shattered Dreams! I am so glad to have you here to share your beautiful journey.
My world for the last few years has been advocating, shouting about CMV from the rooftops. The only story I have been sharing, however, is mine, which is not the only one out there. There are (unfortunately) many other families who have gone before us and will come after.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them. This is just 1 of them...
Samantha: Please introduce yourself and your child.
Angela: I am a mother to two beautiful girls. Avery who is 2 and Elise who just turned 1 in April. Elise is my cCMV baby.
Samantha: Before Elise's diagnosis, had you ever heard of CMV?
Angela: Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened 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, so it is likely I would have been exposed but I never had any blood work done so I will never know if my infection for Elise was primary or reactivation.
Samantha: How did your journey begin? What was going through your mind?
Angela: April 11... a bittersweet day for me. The day we found out that Elise tested positive for CMV.
I will never forget seeing the on call pediatrician come back into the room just a little while after she already did her morning check in.. and I wondered why she was coming back in 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. Not fully understand exactly what this meant.
Rewind to two days before when the nurse casually brought her back into the room after her hearing test and said she deferred on her right side. Very common and especially with c-section babies not being pushed out of the birth canal can retain fluid. They attached a little bag in her diaper to collect urine to test for CMV since the law had just passed in January that any baby who doesn’t pass in NY gets tested. 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. As I inquired about what CMV was because I had never heard of it in my life, 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.
WELLLLL 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, but for pregnant women the virus can reactivate causing it to pass the placenta or if you have never been exposed you can get it from anywhere really but mainly little children. A virus that typically infects young children. A virus that by the time you hit adulthood there’s over a 60% chance you’ve already contracted it. A virus that stays with you for life. A virus 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 if not I did share my food and drinks and utensils with 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 Chris 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 it kept deferring on the right side.
When the doctor then 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 vision 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 ALLL of her.
We opted to do the antivirals for six months. Not knowing if it will help, cause horrible side effects, cause problems later on in her life but 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 an 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 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 friend. With constant good news. I treasure all these precious moments and the many miracles surrounding Elise.
We know many families would pray for this story. Many cCMV babies are severely effected. And those kiddos and their parents are always in my heart
We thank God for his continued mercy on our Elise
We thank God for every milestone she continues to hit
We thank God for every sound and word she makes
We thank God for her standing and walking around the house while holding our hands
We thank God for her hearing so she is able to hear the sounds of her family and friends and experience this wonderful world he has given to us
We thank God for her health
We thank God for her laugh and smiles
But most of all we thank God for blessing our lives with this beautiful girl. We are oh so grateful for his miracles. We pray to you oh Lord for your continued blessings and protection over our Sweet Elise.
Samantha: Tell me a little more about her conditions associated with CMV. At Elise's age, how many specialists are on your team?
Angela: At 1 years old Elise has speech therapy once a week. Before she turned one she was just once a month. She currently says Mama, Dada, ‘Mo” for more, and some more little
sounds for thank you and moo. We currently have a request in for a physical therapy evaluation because while she has had about 6 or 7 solo steps at this point she sometimes seem to lag her leg a little on the left. It may just be that her legs are not strong enough yet and the more she practices walking the stronger she will get and it will strengthen on its own or we may need a little assistance. We are all for ANY and all help that we can give to her to give her the best possible outcomes in life.
Samantha: What is your biggest fear for Elise?
Angela: Losing her hearing on her left side, or not being able to live a “normal” life. I don’t want her to struggle in school or be made fun of for being “different”. We live in a cruel world and it scares me to think of what she may face as she grows up.
Samantha: What is your greatest hope for her?
Angela: I hope she lives a happy, healthy, wonderful life. I never want her to think she can’t do something. I want her to live her life always trying new things and never giving up even when things may get hard.
Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup?
Angela: I love the gym. It gives me time to myself but we are so blessed and truly fortunate because we know that things with Elise could have been much worse. She still is young and we don’t know exactly what we will face but she continues to thrive. I have an amazing support system and a very strong faith based family and friends that help in the dark times. My mother especially has been a true light in all of this. Constantly sending me prayers and asking for prayers from her friends. She has been a very big source of strength for me.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Angela: The best advice a 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 she had. 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. I also had some wonderful people send me words of encouragement like God only gives special needs to special parents, those who he knows would be strong enough to love and care for that child. That really was encouraging to me. Then on the other side I had read an article that also made me think. The article stated that
God doesn’t give special needs children to special parents because there are some parents who have special needs children and they are not loving and caring to them. Hearing that I thought wow yes that is true. It gave a spin saying that God gives special needs children to ordinary parents who indeed are blessed with a child of God and who make their parents better people by being more accepting, understanding, and loving. Either way you look at it was a peaceful meaning for me and something that I have held onto.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Angela: Jeremiah 29:11
“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 you 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 how you approach it all that will make all the difference. Choose hope, choose to be positive,
and choose to never stop fighting your fight.
Oh gracious, Angela. What a testimony. A testimony to your faith and to the grace of God. Your story sounds so much like mine. The nurses brushing off the failed hearing after a c-section, the anxiety following the "what if" game, and the guilt that ate at my heart.
But like you, someone told me to enjoy each moment that I'm given, not long after each moment that was taken.
Choose hope, choose to be positive, and choose to never stop fighting your fight.- Angela
To find ways to spread awareness, increase education, and be an advocate for families like Angela and Elise, visit the National CMV Foundation.
To make a donation to the Foundation in honor of Elise, please visit here.