Hi, my name is Tori and my husband’s name is Matt. We currently live in Logan, Utah with our two spunky little girls, Laina (4) and Mara (2), and are anxiously waiting for our little boy to join us (due in a couple weeks! Hallelujah!) Our oldest daughter, Laina, was diagnosed with cerebral palsy due to Cytomegalovirus (CMV) when she was a little over a year old. Since I had a pretty much perfect pregnancy, finding out our daughter had a disability was quite a shock. Luckily, we’ve been fortunate enough to have some amazing medical personnel added to our lives and one determined little girl who reminds us every day that anything is possible, it just might take her a different way to get there.
Miggy: Hi Tori! Welcome and thank you for sharing your story and especially our daughter Laina with us today. First, can you take me back to the day Laina was diagnosed with cerebral palsy? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Tori: Like I mentioned before, I had a pretty perfect pregnancy. Every appointment was great, my baby looked good and nothing even remotely troubling popped up. Laina was born nine days early and was smaller than my doctor had predicted but she was healthy and passed all her newborn screening. We went home, blissfully happy new parents. Over the next few months things continued as normal. No problems nursing, she gained weight beautifully and hit the early milestones, like holding up her head and smiling. She was a very laid back and happy baby.
We met with a pediatrician who, after talking with us and examining Laina, decided that her problem was either muscular or neurological. He gave us some things that we could do at home and told us to set up an appointment for lab work, an MRI and a swallow study. The first MRI showed calcifications on her brain and they wanted to do another MRI to get a definitive diagnosis. After the second MRI Laina was “officially” diagnosed with CMV, but that was only the beginning.
I’m pretty sure Matt and I were both in some sort of numb shock. I can remember looking at the MRI of my daughter’s brain as the neurologist was pointing out the differences between the white matter and dark matter and what it could mean. To be honest at that moment in time I was more concerned with getting back to my baby who was starting to come out of sedation. Once we were able to get back home and start working with Laina’s therapists again, this time with an actual diagnosis, the shock went away and we were in educational mode. As in finding out as much information about CMV as we could.
Miggy: Please educate us about Laina’s diagnosis and explain how her needs affect your day-to-day life?
Tori: Laina’s primary diagnosis is Cytomegalovirus. CMV is a common virus that infects people of all ages, regardless of ethnicity or socio-economic class, and most people have been exposed to CMV at some point in their lifetime without their knowledge. In fact, it is estimated that 50-80% of adults in the United States have been infected with CMV by the time they reach 40 years old. Once CMV is in a person’s body, it stays there for life. CMV is not a big deal unless a woman who is pregnant catches it for the first time. When a baby catches CMV prior to birth, it is known as a congenital CMV infection. CMV is the Most Common Viral Infection Affecting Newborns that 91% of Women Don’t Know About. I had never heard of it until Laina was diagnosed. Many medical professionals are unfamiliar with it and, unfortunately there is a lot of misinformation spread around.
CMV is:
· Spread through direct and prolonged contact with bodily fluids
· Common among healthy children 1-3 years of age and thrives in daycare/preschool settings
· Preventable: Practicing good standard hygiene, especially around young children helps prevent CMV
· Not Rare. Congenital CMV infection is arguably the most common preventable cause of neonatal disability in the United States. More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.
· Incredibly varied. The outcomes of the effects of CMV are widely diverse. CMV can cause fetal demise, vision loss, hearing loss, cerebral palsy, learning delays, cognitive delays, failure to thrive, feeding and sleeping issues, seizures, microcephaly.
· A child with CMV is no more of a CMV risk to others than healthy children
· Less than a 1% chance of having another child with CMV after contracting a primary infection
CMV affects each baby differently. Laina has since added cerebral palsy, failure to thrive, sleeping problems, eating issues (she has a g-tube), non-verbal, hypertension in her muscles (especially her left side) and slight scoliosis to her medical resume. She has multiple tools for mobility including a wheelchair, kid walker, braces and stander. Laina uses mostly sign language and pointing to communicate although we are in the process of getting her a communication device. She has a g-tube for food now which has been such a huge blessing since trying to get her to eat food was our own personal hell. She uses her wheelchair for transportation around town and at school. At home though, she crawls and bunny hops around the floor. Laina goes to a developmental preschool, which she loves, and has different therapies several times a week. We go down to Primary Children’s every few months for follow up appointments and, most recently, botox injections for her spasticity. The calendar is our best friend. I don’t feel like her needs affect our day-to-day life too much, that may be because this is what we’re used to doing now.
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Miggy: What are the biggest worries you have for Laina? On the flip side, what are your hopes and dreams for her?
Tori: My biggest worries are that no one will want to be her friend. She loves to be around other kids but, because she can’t get up and run around with them, she often gets left behind. She wants to go with them so bad, I can see it in her face. I don’t like big group get togethers because of this. There are some great kids in our church who always make it a point to say hi to Laina and I am so grateful for that. She loves them. She cries when she’s been over at someone’s house and we have to leave. I worry about her future, when she’s older and what her life will be like. I have to always remind myself no to worry so much about the future, because it’s unknown, but it’s hard sometimes. Those pesky night time thoughts are quite sneaky.
My hopes and dreams for her are just for her happiness. We do hope to see her walk and talk someday. I hope that her family and home will always a safe haven for her. I had been worried about how Laina would do with becoming a big sister, but her and Mara love each other and are so sweet together. I’m excited to see them bond with their baby brother and hope that bond will carry on throughout their lives.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Tori: While Laina is mostly non-verbal, she can say a few words. One thing she says is “I did it!” She loves to be praised for the things she accomplishes and demands a, “Good job Laina!” from everyone in the room. If someone doesn’t say “good job” right away, she will point and stare at them until her praise is given. Then she smiles really big and moves onto the next thing, most likely for more praise haha.
Miggy: How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Tori: Come up and say hi! While Laina can’t talk, she understands what people say very well. I’m happy to answer any questions. Laina loves it when kids will play and talk with her. Some of my nephews will pretend to trip and fall, kind of like a silly slapstick routine, and she LOVES it. It cracks her up. Since her mobility is limited, it always means the world to her (and me) when someone stops and takes the time to interact with her.
While we love to have people come up and visit with us, wheelchairs aren’t a toy and my daughter isn’t a doll to push around. Please don’t just grab her chair and play with it. Laina does like to be included but ask before taking her around.
Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?
Tori: I’d probably make them some cookies and tell them that everything will be okay. Try not to worry too much about the unknown of the future (so hard, I know) and to not be afraid to try new things that could help your child. I’d tell them to find a supportive community, whether it’s in person or online. I joined a group for CMV moms on Facebook and it has been so nice to ask a question about something and to have someone who understands answer. If I could go back in time I would tell myself to look into the g-tube surgery sooner since it has been the biggest game changer for us so far. I would tell myself to be more open with my husband and let him know my fears and concerns sooner, instead of keeping them to myself.
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Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Tori: That every child, no matter what, has a purpose and worth. Before becoming a special needs mom I kind of believed that, but now I live it. Just because my child has to do things differently than most people do doesn’t mean she isn’t every bit as important. I’ve also learned that kids are tough, resilient and will constantly amaze you with how they adapt to their circumstances. I’ve sat on the floor, watching my daughter try a new skill and could almost see her brain working to solve the problem in a way that would work for her. I’ve also learned that I have to get out of my introverted comfort zone to be the advocate and voice that my child needs.
You can learn more about CMV at www.nationalcmv.org. I’m also working on a blog that will be up soon. www.thelittlegirlthatcould.com Feel free to follow on instagram @ thelittlegirlthatcouldblog.
Wow, I learned so much from this interview. Laina looks like a ray of sunshine! It is great that you are such a strong advocate for your daughter and also work to raise awareness of congenital CMV infection. Hugs to your family. <3