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Anonymous' Story
"My story begins before my baby arrived even though she never grew inside of me..."
On the day she was born, we were happy to hear all was well with her, she spent a few extra days at the Hospital due to being premature. She went home with her Mom...
Three weeks later is where I came into the picture, I received a call to see if I could take care of a little one, only three weeks old. I am a temporary home; I am here to help parents and children in need. Life can be difficult sometimes and things don’t always go as planned, even though the parents try they sometimes just cannot get back on track soon enough.
She is a beautiful baby, so pretty. Then we start to notice she is crying more and more, like she is in severe pain, sleeps fifteen minutes at a time, eventually she is sleeping on my stomach, trying to sooth her. Then we notice she is not lifting her head, her head is not growing. The Health Nurse was such a great resource for us, I’m not sure what we would have done without her, she was always there for my questions. I had seen a Pediatrician, and his answer was, I don’t see any problem, come back when she is six months. I did not stop there, it was so frustrating, parents always know when their child is not well, so to be told that infuriated me.
I went to my family doctor, I asked her to refer me to the Children’s Hospital in another Province. I knew once I was there my questions would be answered. But it was not that simple. After numerous tests, and train rides back and forth, we still did not have the correct diagnosis. She was put on special milk provided by Public Health, it is not available in stores it is predigested milk. That was one thing that worked great for her cramps and she started sleeping.
All the time waiting and more tests. We started Physio, Occupational Therapy, and Speech. With constant work on each and every thing, she started to learn. She fought every step of the way, but she did learn. So many little things, today when I see her scooting around on her bum to get what she has her eye on, it amazes me, all of us who know her from the beginning.
In the mean time the doctor sent her CAT scan reports to a Neurologist in Holland. She was the one who suggested we check for C.M.V., which I had no clue about. Cytomegalovirus, calcification deposits on her brain is what we were told. More testing and sure enough it did show up in her urine testing.
Now we finally had a name for it, we continued to work with her. A lot of children are much more affected than she is. She is not on any meds for seizures, she can eat well she is just learning to hold her spoon and put the food in her mouth, and she refuses anything with lumps or bumps. All mashed. But no feeding tube. She is not walking or talking yet, but we continue to work, and every day brings new things. This week she touched her nose with one finger, not her whole hand. She just quivers with excitement when we clap as she is doing a new thing. Sounds so simple, but it is huge to us.
She has taught us so much, so very much; life to her is a happy place most of the time. She gets very frustrated when I do not realize immediately what it is she wants. But we are working on signs and sounds for her to talk, and communicate. I know she can understand a lot of things already.
We take so much for granted with our healthy children, as they just start sucking, making eye contact, smiling, all the first few weeks of life, and we never think of it, until we meet a child with special needs.
This little girl may not be my biological baby, but I am her Mom in every sense of the word. We love her with all of our hearts. She will prosper and continue to learn.
You know the worst thing about CMV, is it can be STOPPED. So many people have no idea about this Virus. Just last night I talked to a Nurse who worked in Pediatrics and she never heard of it. To be as simple as getting a vaccine, and to be very cautious while pregnant. This can be prevented. The more people that can be taught about this Virus, the fewer children to be born affected.
So that is my story, it is three years later. It has flown by, seems like yesterday, we went through all of that, a different lifetime ago... I do not worry about my little one; she is treated just like all my children are. I believe that is very important, for her future...
Thank you for caring.
-Shared by her mother, Anonymous