Colby’s Story"My son Colby was born September 14, 2006 and when he was born he weighed 4 lbs 5oz..."
We never knew he was sick- they did induce me though, they said my stomach shrunk and measured different from last week. We just thought he was small for some reason.
They took him to the nursery and he seemed to be fine so they brought him to my room where I wanted to keep him all night with us. During the night, he got where he didn't want to eat and he was severely jaudiced. They brought a heat lamp in our room. I stood by his side all night looking at him and was hoping and praying he would be okay. The nurse came in and said "I have to take him to the NICU you can see him in the morning".
I didn't sleep that night, I was down there as soon as they opened and let me in. I went in and they said "we've ran some blood tests on your baby and his blood platelets are very low. 17,000 when its suppose to be in the 200,000". He received 3 blood transfusions. They said he had CMV(Cytomegalovirus). We were so scared didn't know what it was. They said it is a virus you got in your 3rd trimester and it causes jaudice, small head, low blood platelets, deafness, blindness, mental retardation, enlarged liver and spleen, still birth and cerebral palsy.
Thank God he didn't have enlarge liver or spleen. They did an MRI on his brain to see if he had calcifications and he didn't so he has no mental retardation and he is not blind. The only thing is that he has is profound hearing loss and has some motor delays that he will over come in time. He also has a mild case of cerebral palsy.
He was transferred to Children's Hospital and stayed there for 22 days in the NICU. We stood by his side the whole time and prayed. CMV is a virus anyone can catch. It is a flu like symptom that last up to 7 days. It causes fever, sore throat, fatigue and swollen glands. It is spread through urine, saliva, blood, tears, mucus, and other bodily fluids. Daycares are a breeding ground for CMV but if a pregnant woman catches it, it can be very dangerous and cause all the things I've already mentioned above. Most people get it in childhood and 85% of the population will have it by the time they are 40 years of age.
The weird thing is that the doctors did a test on my mom when Colby was born and she has had it since childhood. I've ate and drank after her all my life and didn't get it until I was in my 3rd trimester. If I would have had it when I got pregnant, Colby would have built up antibodies against it and it wouldn't have harmed him. When a baby is in utero, they don't have the immune system to fight viruses off. If I would have gotten it during my 1st or 2nd trimester, Colby probably wouldn't have made it. So I THANK GOD EVERYDAY FOR MY LITTLE MIRACLE. Today, Colby is the happiest little man. He smiles all the time and hardly ever cries. He looks at me first thing in the morning and gives me a BIG SMILE! He is so sweet! People say he is the best baby.
It has been rough--we have Special Instructor kind of like a physical therapist coming to our home to work with him, a physical therapist, speech therapist, deaf mentor that teaches sign language to us and the Georgia Pines lady to also teach sign. He cruises along everything walk down walls and pretty much anything he can hold on to where he can walk. He doesn't walk on his own yet. He is so close--I have faith in him. He wears AFO's which is little braces that comes up to his knee. He wears them 12 hours a day to help him with stability and eventually start walking. I take him to Atlanta to the ENT(ear,nose,and throat Dr). We were going to get a cochlear implant for him so he can hear. They did an MRI on his brain and said that his brain is too small and he doesnt have enough brain leads to hook up to the implant and the doctor doesn't think it would work. He also sees the audiologist down in Atlanta too and he wears hearing aids just in case he might hear something.
We won't know until he gets older. He doesn't talk at all but has a set of lungs! He can say his vowels for sure. We went to the Orthopedic and he took x-rays of his little back and hips. He said the x-rays look good his back isn't 'S' shaped like ours but when he starts walking it will be. He said he has a mild case of cerebral palsy which causes him to tighten up a lot and is going to cause his hips to grow outward which will result in him needing hip surgery later on in life. He said you have three options two of the options we cannot do. The only option left is a shot of botox to help him relax his muscles. The doctor said it is very painful and only lasts 3 months. I'm not going to do it right now, we are going to keep a close eye on it and he goes back to the doctor in a couple of weeks. I want to do the BEST for Colby but right now I don't think its neccesary. If we go back to the doctor and he says "look we have to do it right now or else", I will or I might wait for another year. He has been through so much pain in the last 2 years of his life, he is deaf, and doesnt understand things. It breaks my heart. Everyone please pray for us! It seems like when there is one good thing, one bad thing comes along with it. I have to be strong for Colby--I will not give up. I will stand by his side, teach him, and be there for him and give him everything I can. Everything happens for a reason, maybe God gave me him like this because he knew I could handle it and I would be a good mommy.
I am currently learning sign language and doing pretty good at it. I might teach the deaf one day. God Bless!
- Submitted by his mother, Amy Hise
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
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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..."