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Delaney's Story
"Delaney was born with active Congenital CMV infection September 2004. I had a very normal pregnancy and delivery with Delaney..."
I was in labor with her for less that 12 hours total. Delaney was born with I remember looking at my beautiful baby, seeing the spots (petechia) on her face, and thinking no one in our family has freckles, where would the freckles come from? The nurse reassured me that it was probably from the pressure the baby experienced at birth. I believed her, but looking back, I could see the doubt in my moms eyes as the nurse was talking to me. My mom was with me at the hospital and has been a nurse for 30 or more years. Delaney was about 24 hours old when the neonatologist came and took her from my arms and told me she had to be admitted to the NICU due to CMV infection. I was devastated! Neither my mom nor I ever heard of CMV. Neither one of us knew what the possible future outcome would possibly be for my little 6lb 6oz baby girl.
Delaney spent 5 days in the NICU. There they confirmed the infection and discovered she had calcified spots inside her brain. No one would tell me what that meant. Every doctor in that hospital all just said “we will just have to wait and see” That was so frustrating, made me feel so helpless, seemed so uncaring of those doctors at that time. I really hate that phrase, even today! The “lucky” thing that they did discover is that the brain was pretty much the only thing affected by the virus that they could tell at that time. As she was (finally) being released to me her neotologist looked me in the eye and told me “She will never walk, never talk, never have independent use of her fingers and toes. She will always be in a wheel chair and need constant nursing care.” WOW! Did I feel defeated then, and she was only 5 days old.
Over the next few months our lives were full of doctors appointments, trips to University of Michigan, and physical therapy appointments. It seemed that every doctor we visited found something else wrong. The eye doctor said she has all kinds of vision problems from nearsightedness to astigmatism, but at least she could see! The Ear, Nose and Throat doctor found a malformed Eustachian tube which was giving her tons of ear infections, but at least she could hear! She was put on an I.V. drip dose of Gancyclivir for 3 months. I felt terrible as a mother that I was allowing this toxin into my child’s body. Hoping and praying that it would stop the virus, and allow her to keep her vision and hearing. That 3 months was a very lonely time. As the medication lowered Delaney’s immune system, she really could not be out and about, other than the trips to our hospital lab 4 times a week to monitor her white blood cell count, and other doctors appointments. I lost many of my friends during this time. People who I thought would be my friends forever, were uncomfortable, felt awkward around, or just didn’t want to be near Delaney and myself.
As she got older, I knew the calcifications were affecting her development. At 9 months old, I called our school system and they sent a psychologist to our home. He observed her, I filled out paper work, they got copies of medical records. Due to the unknown nature of the CMV virus, she was diagnosed as Severe Multiply Impaired. That diagnosis changed to Autism when Delaney was 5. She was late reaching milestones, did not ever have a social smile as an infant, and never attempted to put finger food into her mouth. The baby who didn’t eat until she was forced to at birth graduated from the bottle to a sippy cup at one, drinking 4 ounces at a time. Often throwing that back up within an hour of eating, every time. She didn’t gain weight. She was 16 pounds at 15 months, and finally hit 20 pounds around age 2. Age 2 was quite a year, she did not eat, did not sleep, the infant who was labeled “Failure to thrive” was then diagnosed Anorexic. Soon we started even more therapies every week. With the terrible two’s came terrible temper tantrums. She would scratch her chest until her whole body, and shirt she was wearing was soaked in blood. She would bang her head on the floor, until her forehead was swollen and bruised, and she would attack me. She would scream, kick, scratch, and head butt me, until I looked like I had been in a fight, and lost. With the rage, came even more stomach problems, and she was throwing up after almost every meal. At 2 1/2 she started a special needs preschool and it was a life saver for both of us. She still had her tantrums and behaviors, but with her at school I was able to have a break and re-group and get ready for the evenings. Every day Delaney's teacher was scratched, kicked, and screamed at by Delaney. I would often pick her up and her teacher would have visible scratches and welts on her from Delaney, and every morning the teacher was just as happy to see Delaney, welcomed her with a song and a hug, vowing to help her make it through.
The sleep problems were the worst about this time. Every night, she would go to bed and about 2 hours later would wake up screaming. The screaming would last for hours. Sometimes the rest of the night. She would finally fall back to sleep around 6 A.M., just in time for me to have to get up to start the day. I was physically and emotionally drained, my marraige was being pushed to its limits. Finally, we started giving her medication for sleep around 2 1/2. It helped a lot, but at 8 she still doesnt sleep through the night most nights.
Also at 2 1/2 she astounded me by coming up to me, looking me in the eye and saying p-e-n-g-u-I-n-...penguin”. I looked at her, nearly crying and asked what else she could spell. She then spelled elephant, tiger, zebra, and monkey. All animals from her favorite toy. So after that I taught her to read. By five, my child who could talk, but not communicate, was reading on her own. By the time Delaney was 5 she went from speaking 5-10 words at 2 to pretty much anything she heard. The problem was the she literally repeated back everything she heard. Yes she was talking, but not communicating. And boy is there a big difference between talking and communicating! The other big thing that happened around 2 was Delaney’s love for the piano. She plunked out Old McDonald had a Farm on a xylophone around 2, playing from memory. I quickly took away the xylophone and gave her my old keyboard, where she taught herself to play the piano. Between ages 3-8 we settled into our own definition of normal. My husband and I had 2 more children, who have been great for Delaney. They have proven to be the best therapy tools, the best friends, and the worst enemies Delaney could possibly have. Her communication has slowly improved to the point that she does have some independent communication. She has been put on medication to regulate her behavior, and at 8 years old is finally up to 45 lbs. The biggest improvement has been socially. Delaney, my 8 year old autistic child loves to come up to just about anyone, and hug and kiss them, sit on their lap, and try to engage them into her form of communication by asking ”Can you say violin?” over and over again. She still loves the piano and has graduated from nursery songs to Beethoven, Mozart, and Chopin. She plays absolutely beautifully!
I often think back to that day when her doctors told me what terrible, terrible outcomes lay in store for my sweet baby. I thank God that they were wrong in every way. She does walk, she talks, she has independent use of fingers and toes. No wheelchairs, and no nursing care. I know that we are not out of the woods. She has brain damage. Over time, I expect that the seizures will come. She may possible lose some of the abilities she has now. But for now I feel blessed that Delaney is not as severely affected as she could have been. For now, I have the gift of Autism, the gift of Delaney.
- Shared by her mother, Diane