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Maggie's Story
"I am the mother of a beautiful little girl named Maggie who is a 3 1/2 year old survivor of CMV..."
Our story starts like all mothers. I found out I was pregnant and was ecstatic!!! I had had a miscarriage 5 months earlier and couldn't have been more thrilled to be pregnant again. To add to the excitement, my sister was 1 month ahead of me and my sister-in-law was 2 weeks ahead of me.
I will say that even though I was excited, I had an overwhelming feeling something was wrong. I had Medicaid Insurance at the beginning of my pregnancy and Medicaid did not cover ultrasounds unless they were medically needed. I had 2 cousins that were severely disabled so my brother insisted he pay for my ultrasound to make sure everything was ok.
I was so excited the minute the nurse said I was having a girl! She measured everything and the baby was growing perfectly except for her lateral ventricles in the back of her head. The 2 ventricles measured large but still within normal at 19 weeks gestation. The game plan was to monitor the ventricles with a specialist. All the while, I had a terrible sinus infection. I kept going to my OB/GYN for my cold and she kept giving me antibiotics for my sinuses. This was not a normal cold, for 4 months of my pregnancy from about the 2nd month to the 6th month, my nose ran like a faucet, my eyes watered all the time and most of the time I could not breath through my nose along with a terrible sore throat. As time went on, her ventricles kept getting larger (way out of the normal range) and I knew something was really wrong.
I went the last 2 1/2 months of my pregnancy without an ultrasound, so when I went to the specialist at 35 weeks, he was shocked. There were calcifications all in her brain, the brain cortex wasn't developed and her head was markedly smaller than normal. I was devastated. Knowing my cousins, one hydrocephalus and the other microcephalic...their quality of life was poor and they didn't live very long.
At 36 weeks and 5 days, I had a c-section and delivered my beautiful little girl. She looked perfectly normal. I thought to myself that the doctors could be wrong, maybe it wasn't as bad as they thought. They had prepared me for the worst; she probably would not be able to eat on her own, she may not can breath on her own, and most of all, she could die. Well, none of that happened.
She went straight to the well baby nursery, she nursed right off with no help, she passed all the screenings...why are they telling me something is wrong with her? She went home with me from the hospital and then we went to 8 different specialists the first 2 weeks she was here. All of them had seen her brain scan and couldn't explain how she was doing so well, there was so much damage to her brain. The general consensus was, 'let's wait and see what happens'. So, we went home and starting living.
The 'colic' started around 6 weeks. She cried relentlessly for 3 months. I was unraveling quickly. Mind you, all the while my sister had a girl 30 days before me and my sister-in-law had a girl on the very day I had Maggie. So, I had 2 examples of what normal was supposed to look like. The first and only milestone she met on time was her social smile. I was over the moon about that. But, while my nieces started chipping away at their milestones and growth charts, my daughter was crying non stop and had not even come close to rolling over. At 4 months we finally had an EEG done and found out she was having silent seizures on her occipital lobe. They put her on Phenobarbital and within 2 days I had the most precious, non crying little baby in the world. Not colic at all...it was seizures the whole time. I felt 2 emotions; relieved and overjoyed my baby quit crying and horrible for not realizing sooner.
My goals the first year where ambitious to say the least. I had told the therapist we thought she would sit on her own at 12 months and crawl by 18 months. Boy, was I ever wrong. She is 3 1/2 and still does not sit un assisted. Over the last 3 years, our goals have changed dramatically. We have daily goals of much smaller scale but bigger importance. When I used to think so much about when she would start crawling and walking, I now think about how to stay well and out of the hospital.
Along with her complications of CMV and severe seizure disorder, she is also extremely allergic to dairy among other things. She has asthma. She has Grade 2 reflux in both kidneys and also allergic to all bug bites. Maggie takes 5 maintenance meds twice a day for seizures, and kidney infections. Her quality of life is pretty good. She enjoys music(she does not suffer from any hearing loss) and she loves riding in the car, which works great for me because that is where we spend most of our time. We live everyday teaching people to accept and understand.
I cannot believe I have never heard of the Stop CMV community. I am so excited, and whatever I can do in my area to spread awareness, I am eager to be a part of it all. Thanks for all you do.
- Shared by her mother, Cameron