Meet the Founders: Janelle Greenlee
I type this seated in the bedroom of my 12-year old daughter, Riley, who was born with congenital CMV. Riley is lying on top of a shag rug on her floor, looking up into an angled mirror, laughing and mouthing a teething toy. She kicks her legs, almost in a marching motion, and glances occasionally at her TV, which is broadcasting an international soccer match.
Riley occupies her room with her twin, Rachel, but in a much different way than in years before when her crib would be across from her twin sister. Now, Rachel’s crib has been removed from the room and her presence marked instead by a simple wooden box on top of a pristine white console.
Rachel didn’t get to celebrate her 12th
birthday with Riley, or any members of her family or friends or loved ones. Because Rachel passed away on the early Sunday morning of November 23rd
in 2014 in a private room surrounded by family at the Children’s Hospital where she spent so many years of her life, fighting infections time and again. Within the hour after she passed, we were asked to step away from the room so that they could prepare her to be taken to the lower floor of the hospital for transport to a funeral home. I had never felt such a tremendous overpowering shock in my life and so, to process and give them time to take care of her, we went walking through the hospital halls to the cafeteria.
And there were people. And I caught myself looking directly into the face of every person that I passed in that hallway. I almost surprised myself because, in my shock, I met their faces with a smile on my own. I truly wanted to stop these people, to hug them and talk to them, and to tell them about the sweetest, strongest, most beautiful little girl in that whole hospital… who they now would never get the chance to meet.
Now I want you to meet this little girl, Rachel Nicole, and her twin sister, Riley Alexandra.
My pregnancy with my twins was much sooner than I had expected. My husband and I had an 8 month old son, but figured we should start trying in case it would take some time to successfully conceive our second child. To our surprise, our second child was not alone but was paired in tandem in utero with our third child. And we were mightily nervous about the prospect of three children under the age of 16 months, but we knew that we would handle it day by day and do our best to love and raise our three little ones. Midway through my pregnancy at an ultrasound, twin B (Rachel) was noted to have severe neurological abnormalities and we were given the option to terminate the pregnancy, which we declined. No source for these abnormalities was found via amniocentesis and only until Riley and Rachel were born at 35 weeks and 3 days gestation did we begin to understand what had caused concern during the pregnancy.
My delivery was on August 9, 2003 in a large surgical suite with expansive windows looking out to a beautiful coastal mountain range. I knew that I had no idea what was going to happen after these babies were born, so I chose to relax and I took the experience in.
But there were people. So many clinical spectators joined in my delivery because word travelled fast in that hospital. I decided to not look behind my head around the room but to only look forward and to focus on this transformational moment where we would all get to finally meet Riley and Rachel. And my girls were so lovely and so messy and sweet and fleshy and soft. And regardless of anything that might have been amiss, they were mine--my little girls.
Shortly after delivery, Rachel was whisked away to the NICU where, two days later, she was diagnosed with congenital CMV. We were told that there was a 90 percent chance that she would live in a persistent vegetative state or die. Riley was diagnosed five days later with congenital CMV and we were told that she would have a problematic outcome, but less severe than Rachel’s.
So what exactly do you do with information like this? Especially when such scary, bad news is cloaked in soft skin, bright eyes, and little pokey fingers and toes? Whatever may have sustained damage on the inside of our sweet girls, we decided, would manifest itself soon enough. We chose to focus on a normal, happy, loving life with them, granted ours was replete with specialist visits and early intervention services. And, as the time went on, Riley and Rachel began to show their congenital CMV involvement with hearing loss, vision impairment, cerebral palsy, feeding issues, seizures, and more.
As the years passed, the girls' needs changed and their development spaced off. Riley became a bright, social, spirited girl, but Rachel stayed developmentally at about a 3 month old level. Riley has always typically been extremely healthy, is not on any medication, and rarely catches any seasonal illness or infections. Rachel, however, spent the last years of her life catching everything and harboring countless infections in her small, fragile body. The days leading up to losing her seemed so eerily similar to her routine hospitalizations that I truly believed she was going to make it longer with us, even if just by a few weeks or months. But, however terminal a child’s medical condition may be, you never can really expect to be prepared for their passing.
But, thankfully, there were people. People in our lives so incredibly loved our Rachel and reached out to our family to love and care for us in our grief. Much the same way that CMV support networks and communities had been built over the years, my family and I became the recipients and an unbridled love and charity from the CMV community that buoyed us amidst the shock and grief of losing our child. And we needed it. We needed those people. But we were not and we still are not alone.
Today, approximately 70 babies will be born with congenital CMV. Some of those babies, thankfully, will go on to seemingly have no illness or long-term effects from the virus. Some babies will not be so lucky and they will experience disabilities and health issues similar to those of my twins. But every child born with congenital CMV, as well as their families, need support and guidance to cope with a confusing and maddening diagnosis like congenital CMV. They need to know that they aren’t alone and that they are part of a larger community of families, physicians, and supporters—even and especially those supporters who have not had their lives touched by CMV.
And there are people. People who haven’t been affected by congenital CMV are all around us—just watching us—and they need to be affected by us. And by our children. And by our stories and our experiences.
So, now that you’ve met Riley Alexandra Greenlee and Rachel Nicole Greenlee, I’d like for you to meet me.
My name is Janelle Greenlee and I saw a desperate need those many years ago to carve out a cause and a community of our own for congenital CMV through the website and organization Stop CMV. Over the years, as the fight against CMV has grown and has attracted more talent and resources, so too has the interest in aligning complementary CMV organizations into one combined momentum against congenital CMV. I am excited by this, I am invigorated by this, and I look forward to serving the needs of all people who have been affected and may be affected by congenital CMV.
Because there were two people, Riley Alexandra Greenlee and Rachel Nicole Greenlee.
Category: Community, "Parent Perspective"