Morgan Grenawalt loves music, dancing, playing in the water, her brother (Hunter, age 5) and anything princess.
While she may have the same likes that other toddlers do, other toddlers aren’t like her.
Her mom, Alysa Grenawalt, describes her as fearless. A large collection of beads represents many occasions that called for bravery. Through the Beads of Courage Program, Morgan receives a bead for every doctor’s appointment, therapy session, blood draw, medical test, and inpatient hospital stay. From February to May, Morgan earned more than 100 beads.
In July and August, with an inpatient stay, surgery, therapy sessions, doctor’s appointments, scans and other tests, she likely will have a couple hundred more beads.
Two months shy of 2 years old, Morgan has gone through a lot her lifetime.
A Facebook page chronicles Morgan’s CMV Journey.
CMV is short for cytomegalovirus (sy-toe-MEG-a-low-vy-rus). While coming into contact with the CMV virus is common and typically harmless to the general population, that National CMV Foundation reports it can cause severe disease in babies infected with CMV before birth.
Every pregnant woman is at risk of acquiring CMV, but the foundation reports only 9% of women know about it.
Morgan’s parents, Ben and Alysa Grenawalt of Milton, want to change that.
“Our goal is to make CMV more well-known to try and prevent other children from being born with a completely preventable illness,” Alysa said.
They also want to share resources to help other families, especially financial resources, since, as Alysa noted, there are many out-of-pocket expenses for a family with special needs.
CMV impacts many aspects of Morgan’s life.
At 7 weeks old, she got her first hearing aids. She has cerebral palsy, which affects her ability to move and maintain balance and posture. To bring nutrition directly to her stomach, she has a gastrostomy tube. She has decreased muscle tone, muscle spasms, tremors in her hands and legs, kidney damage, brain damage, sensory processing disorder and needs oxygen at night.
In all, Morgan sees 13 specialists, a physical therapist, an occupational therapist, a speech therapist and an Early Intervention teacher through Rock County Birth to 3 program, which Alysa said has helped a lot with aiding Morgan’s development.
Morgan will have significant health problems the rest of her life, but they do not define her.
“Morgan is a fearless and determined little girl who is very headstrong at the same time and will overcome and challenges that come in her way,” said her mom. “My husband is amazing coming up with new ideas to help her such as building her a hand-controlled power wheels to help her be mobile in the yard and keep up with her brother.”
Hunter is always looking out for Morgan and also figuring out ways to help her, Alysa continued.
“Morgan loves playing with her brother Hunter and lights up anytime she sees him even if they have only been apart for 5 minutes,” she said. “They’re bond is beautiful to watch.”
Alysa said she takes pride in advocating for Morgan and telling others about CMV.
How did the Grenawalt family learn about CMV?
When Alysa was 20 weeks along in her pregnancy, an ultrasound showed Morgan had an echogenic fetal bowel, which means the fetal bowel appears brighter than it’s supposed to, and Morgan’s growth was restricted.
Alysa was told her baby likely had cystic fibrosis, which they later learned she does not. CMV symptoms in utero often mimic cystic fibrosis, she said.
When a blood test was done to see if Alysa was a carrier for cystic fibrosis, she was also tested for CMV. A test for CMV showed a recent primary infection. Alysa’s doctors believe Alysa likely had CMV for the first time around 8 weeks. At the time, she worked in a daycare and had a toddler of her own.
According to the National CMV Foundation, most children and adults who contract CMV will not experience any symptoms and may not even know that they have been infected. Others may develop a mild illness, or may have symptoms including high fever, fatigue, general discomfort, joint stiffness, muscle aches or joint pain, night sweats and sore throat. Since these are also symptoms of other illnesses, the National CMV Foundation says most people do not realize they have been infected with CMV. The National CMV Foundation encourages: “If you have experienced any symptoms during your pregnancy similar to a seasonal illness, ask your doctor to test you for CMV infection.”
Alysa decided to not have an amniocentesis to confirm the CMV infection. She said, “Morgan could have contracted it from the amniocentesis if she didn’t have it already since it could have passed from the needle used in the amniocentesis.”
From 20 weeks on, Alysa had weekly ultrasounds. When Morgan was born, a urine test, blood test, brain ultrasound and MRI showed CMV.
According to the CDC, about 1 out of every 200 babies is born with congenital CMV and about 1 out of 5 of these babies will have birth defects or other long-term health problems.
“We thankfully knew she was born with the virus so she was able to start on a treatment for 12 months,” Alysa said.
For babies with signs of congenital CMV infection at birth, the CDC says antiviral medications, primarily valganciclovir, may improve hearing and developmental outcomes.
Getting intervention early helps aid a child’s development as they then can get the most help as they can in the critical times of a child’s development that is within the first couple years of a child’s life.
The antivirals were very hard on Morgan’s body, her mom said. Morgan had an extremely low immune system. Blood tests were done, weekly, then monthly until she was done with the treatment. Now, she has labs done about once a month.
On July 9 Morgan was discharged from the hospital. She started a nerve blocker medicine to help with pain and help her sleep. An EEG didn’t show seizures; her neurologist isn’t convinced but hopes the medicine will help. She has a follow-up appointment with a urologist in two weeks. She struggles with her blood pressure being too high or too low and now has emergency medicine to help when her blood pressure is too high. Multiple symptoms indicate that Morgan has autonomic nervous system damage. Likely Morgan will be seeing more specialists.
On Sunday, the sun was shining, there was even a breeze and Morgan had the Northside Intermediate School playground all to herself. She went down the slide, enjoyed the swing and climbed up the playground equipment. A bow in her hair and wearing a Johnny Cash romper, she was all smiles.