Bailey’s Story"It has taken me a very long time to put our story in words..."
Part of that is because I don't feel very inspiring much of the time, but I do know that what I write will resonate with someone and if it helps them to know that they are not alone then I've done a small part to contribute to this network of remarkable parents and children.
I'm going to cut to the chase and touch on the highs and lows of our journey. I was incredibly sick throughout my pregnancy with Bailey but never suspected that there was anything wrong with our baby. I was induced 10 days after my due date and I sometimes joke that Bailey would still be in my womb if it were left up to her. She was born weighing 5lbs. 1oz. and needed oxygen right away.
Within a day we were told she had a diaphragmatic eventration on her right side (i.e. her diaphragm wasn't working, it was elevated and crowding her lung), but they knew that wasn't enough to cause her to require as much oxygen as she needed. After running Bailey through the multitude of tests we were told a week later that her diagnosis was congenital CMV. We were completely unaware of what that meant and the doctor explained the full spectrum of what the consequences would be for Bailey; including the fact that she was profoundly deaf. My first response was "I can't do this." My husband grabbed my hand in a way that meant he knew differently.
Bailey spent the first 3 months in NICU. She was not at all interested in eating due to massive reflux and despite regular respiratory treatments she had a very high oxygen requirement. They indicated that the CMV was centralized in her lungs and they considered her to have CMV pneumonia. We were sent home right before Christmas, but Bailey wasn't ready and within the week we were back in NICU; apparently this is a rare thing to be discharged and be readmitted into NICU but the severity of Bailey's condition warranted the decision. At 4 months of age Bailey had a G-tube placed along with a fundoplication to keep her from suffering from the reflux.
After those initial months and her eventual discharge from the hospital, Bailey progressed very slowly despite her heavy routine of OT, PT and "speech therapy."
Her oxygen requirement lessened and by about age 3 she was only using oxygen at night and when she became ill. We went through various doctors in Alaska, Washington and Idaho talking about the best options for Bailey. Her spine was slowly progressing into a severe case of scoliosis and secondarily her right hip eventually dislocated. As her scoliosis became worse she started to succumb to pneumonia. Her first, and worst, case of pneumonia was October 2005; Bailey was 10 years old at the time. The intensity of that bout and the rapidness of its severity was horribly frightening to my husband and me. Even with a high level of care and attention, Bailey wasn't recovering and my husband and I were told that Bailey wasn't going to make it through the night unless they dramatically increased the concentration of their efforts and it would be very hard on Bailey. We were told to make the choice of whether or not to put her through that level of treatment when it wasn't certain she'd even make it through. She was already so weak and bruised and scarred from prior weeks' treatments it was a horrifying concept to put her through more. We screamed at how unfair this was, hugged one another, prayed for an answer, and cried until the doctor's said, "We need to know now. Bailey is dying." We chose to save her, we told them to do everything they could to save her and they did.
That was a turning moment in our lives and it might sound like a really great thing to say that Bailey is still with us because of that decision. There are parents out there who couldn't imagine making a different decision and would have done the same thing. There are parents out there that wish every day that their child was still with them now. It will seem unfathomable to hear me say that I think we made the wrong decision and it pains me every day to think about that moment. I think that to the majority of parents out there this will be incredibly difficult to understand and they will disagree with our position. That is okay, because for those few that know exactly what I'm talking about who feel the same guilt I do, I know that my story will help them to know they are not alone.
Do I wish my daughter was dead? Absolutely not. Do I think we made the right decision that night? No, I think we made a selfish decision, I think we made that decision so that we could keep her for ourselves. I don't think we made that decision for Bailey. However, and I've analyzed this situation for thousands and thousands of hours, I do believe that if God had wanted her that badly it wouldn't have mattered what the doctors did to Bailey, He would have taken her. So, while I take on the fact that it was our decision I also know that God would have given us the strength to make a different decision had that been the RIGHT decision. My point is that I feel so sadly responsible for the suffering she endured that night and since that night such that I wish I had had the strength to let her go. I didn't and I don't know that I'll ever have it or be faced with that decision again. I do know that I am not the only parent who feels like I have no idea what I'm doing in this world of parenting a special needs child.
Bailey made it home from the hospital and subsequently had several additional bouts with pneumonia, none near as severe as the first. Her scoliosis progressed to 110 degrees and at age 11, she went through a 10 hour surgery to have rods placed. Since that surgery, Bailey has been able to recover much quickly from her illnesses and hasn't used oxygen more than a few times due to a cold or flu. It is a great relief to us to have our happy and loving little girl be as able as she can be and not suffer the hardships she endured before the surgery.
Today, Bailey uses a wheelchair, has almost no communication (except to sign "swing" and "Mom"), has very poor circulation in her legs and feet, experiences grand mal seizures several times a year, takes all her nutrition through a g-tube, exhibits signs of pain - though we're not sure why, and has very limited use of her extremities.
Today, Bailey makes sure she gets all the Mom-and-Dad-lap-time as humanly possible every day. When we put her arms around our necks she uses every muscle in her body to hold on as tight as she can. She loves to swing, be in water (swimming or bath time), ski (in her sit-ski), flashy lights/fireworks, dog toys, horses/horse therapy, our Beagle Lilly and everyone who takes the time to see her for the precious little girl that she is inside of that obstacle of a body she lives in.
I wrote the following statement as though Bailey were able to express how she feels about the "heroes" in her life...I hope you find it to be the kind of message every child like Bailey could tell:
"Are you my hero? In my short yet intense years I have been blessed with a circle of people who have loved me every day, people who are very close to me; they are the reason the sun shines in my world. They represent the sparkle in my eyes and the smile on my face. So, when it is time to talk about my hero(es) I must identify them first but with great certainty my circle of heroes is much larger than those closest to me. My true heroes have exhibited one consistent feature...when they look into my eyes they do not see a child with non-working legs, deaf ears, or a mind that doesn't represent my age. What these heroes see is my pure heart, my affection for all people, the trust in my eyes, and the innocence of my desires. They have not labeled me useless, they have not treated me as a lesser person, and they have never stared at me with discomfort. These heroes see me..Bailey...a whole person, someone who knows happiness, someone who loves the wind in her face, the water on her fingertips, and the world around me. These heroes don't see my scars, my devices, or my chair. These heroes see me and I am surrounded with a great many heroes. Thank you for being my hero."
Listening to those who have been taken by CMV, what would they have to say to us:
"My heart's desire is that the memory of me is not restrained by my limits on earth. For now that I am gone I can achieve every glory. I have been given wings to fly, I can dance until my feet ache, I can sing melodies which would bring tears to your eyes, I defeat my opponents with grace and humility, and I've put down on paper the answers to all the worlds' troubles. I am the envy of all who aspire to be me. I can reach the stars on my tiptoes as I balance on a rainbow high above your world. Remember me, as you never saw me for my purpose on earth was not to be glorified in the ways of your world, but to offer myself to all of you so that you may know life and live it to the best of your ABILITIES. When you choose to reveal your greatness to the world you are setting the stage for what I have become now that I am gone. Remember me as the light, the life, and the beauty of the goodness around you and you will remember me as the perfect being God allowed me to be for you."
- Submitted by her mother, Karen Gillis
Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease. Click here to read their stories.
Lisa Saunders
"Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries". ... more
Melissa Prosper
"For the rest of my pregnancy I got bounced around from specialist to specialist for all kinds of testing. I had MRI's and ultrasounds and with all of them came more bad news. It seemed like every doctor had no hope for him"... more
Rosemary Carter
"Two days after his birth, he failed his newborn screening in both ears. He didn't like being held because he liked to bend his back backwards a lot. He failed all hearing tests and we did an ABR"... more
Sharon Caldwell
"As a new mom I believed she was just a little slow and she would catch up (she was 3 months) but I did as the doctor wanted and that is when all the tests began"...more
more parents stories Share your CMV Story
Please include details about you and your child's experience with congenital CMV. You're encouraged to include information about your pregnancy, delivery, diagnosis, prognosis and how your child is doing. Feel free to write about your thoughts and feelings as you have raised your CMV child.
Your experiences will encourage and strengthen other CMV parents and will offer the public invaluable insight about the CMV virus. These compelling stories can be the key to positive change - policymakers, the press, and other key influencers will learn more about congenital CMV and its profound impact, largely unseen around the United States and the world, until now...
Send your story to: email@stopcmv.com.
Real Story of Congenital CMV"Imagine giving birth to a baby and finding that your baby was exposed to a dangerous virus during pregnancy.
This virus, Cytomegalovirus (CMV), could have a questionable impact on your child’s development and prognosis and you have no outlook as to what your child’s life and medical situation would be. You were never informed of this virus by your OB/GYN while pregnant and were never told to take any precautionary measures to prevent exposure. You blame yourself for allowing harm to come to your unborn child and you wonder how and where you may have acquired the virus and what you could have done to prevent it. Upon learning that you likely acquired the virus from small children, even possibly your own small children, you blame yourself for not being more careful but you also slightly resent your other children for indirectly harming your newborn.
When you research the internet and search for information about CMV, words like "herpes" and "HIV" come up in many of your searches and you feel additional shame and guilt wondering what you did to harm your baby. When you read about CMV, you read in pregnancy and parenting forums that it is "rare" and "uncommon", coupled side by side with data from medical sites, putting statistics closer to 1 in 150..."