Isaiah’s Story"Hello, my name is Jennifer Stall and I’m a proud CMV mommy! My son Isaiah was born on December 28, 2001 (I was one month shy of my 21st birthday)..."
Unlike a lot of you, I was informed at an early part of my pregnancy what I was facing. It all seems like yesterday, I went in for my 1st ultrasound and the nurse spend quite a lot of time on my and kept going over the same things and scanning what she was seeing and taking lots of pictures. Being a first time mom I didn’t know that this isn’t was is suppose to be happening. Just like any other ultrasound I went into the Doctor’s office and waited and he came in and just sat down and said "I have some news for you, and there is something very wrong with your baby".
My mom, who was with me, instantly started crying and this Doctor who had been her Doctor for years and knew her gave her a hug and explained they would be sending me to Denver, a 4 hour drive, the next day and seeing a specialist. I should have asked more questions or had some kind of reaction, but I just sat there, numb not really thinking anything. I talked to the check out nurse, and shook my head and smiled and walked out.
We then went to my Dad’s office and then it all just hit me. I mean I was very young, on my own (Isaiah’s birth father had left when I got pregnant) and now I was thinking of all the horrible things that could be going on. I had low amniotic fluid, his liver and kidneys were enlarged and he had "black spots", as the doctor called them, on his brain. Quite a lot for a young woman who hadn’t really experienced much nor done much. I was going to school at the time so I went back to school acted like I was ok and informed the teachers I would be gone and didn’t know if I’d be back.
My parents, brother and I packed in the car and headed to Denver the next day. We meet Dr. Porreco, in some way a lifesaver, he did all the usual tests and gave me an amniocentesis and sent me home. He had given us the realm of things that it could be and CMV was the last on his list. He had believed it was a genetic disorder or a chromosome disorder. He called me about 2 days later and gave me the diagnosis of Congenital CMV. He said I was to come to Denver every 2 weeks and see my local doctor on the off weeks. I was instantly put as a high risk pregnancy. When I went back to Denver I saw a different doctor who read me all the things that were possible with CMV kiddos, then told me she would give me a name of a place who would do abortions, because my Colorado laws I was to far along. Never did that cross my mind. I was told he wouldn’t be able to talk, walk, see, hear, eat, or even know who I was. They gave me the worst possible things that could happen.
I was induced at 34 weeks and much to the doctor’s surprise Isaiah was healthy, a little under weight at 5 lbs 6 oz, 19 in long, but healthy no the less. He was perfect and ALIVE, which they told me it was a big possibility he would be still born. My brothers, sisters and parents were there to see and as my brother said "he was a peanut" and he was good. He stayed in the NICU for about a week (the whole time I was a bawling wreck). I remember sitting in his isolated room listening to one Neonatologist tell the nurses that I was getting my hopes up and not facing reality and she felt sorry for me having to keep this baby. I couldn’t believe someone would say that. How horrible of a doctor none the less to say that.
Today, Isaiah is the healthy, happy, giggly spark that keeps my going. He goes to a exclusive school for part of the time and is included in our local public school and is in 1st grade. He is a year behind, but doesn’t bother me because at least he is included and wanted in his class. He has great teachers, Para, and therapist who work with him. I’ve had to fight for all he has right now, but I’d do it again everyday of my life to get him where he is today. He has severe hearing loss in his left ear and tubes to prevent anymore hearing loss or infections. He had a feeding tube put in when he was 1 1/2, which I had to fight for with a local Doctor. He also has the Nissen Fundoplication to help with reflux, which he has found a way to throw up with it anyway, it’s more of a behavior for him than anything else. He does it because he doesn’t like what he has to do or wants something else (any suggestions to stop that would be nice. Ha-ha).
He has recently been fitted for glasses because of astigmatism and he was excited to try them on. He also has seizures which are controlled by medication. I used to pack him with therapists, Botox, and anything else that someone would tell me would improve him, but I’ve learned that nothing is going to change who he is and what he can do, nothing will give me back the child that I had hoped for when I found out I was pregnant. We took Isaiah to the Shriners Hospital (which is the more amazing thing I’ve ever done) and we spoke with a Doctor who gave me an insight I didn’t have before, he told me that nothing I did would make him "normal" and no appointment or surgery will make him walk, talk or eat, but I can love him, care for him and do the best for him with what he can do and make the best of it. He told me I was doing the best thing for him and that was to love him. I had never thought of it like that and when I got home all his therapists and teachers thought I was crazy, but this is what I’ve choose to do and he is happy, so happy sometimes I wish I could bottle it up and take it like a pill.
This may not be the solution for everyone, but it’s ours and I like many of the other CMV mommies have said, I wouldn’t be who I am today without him and wouldn’t change anything about him. He makes my life worth living and makes me want to be a better person and will continue to bring joy to everyone he smiles at or come in contact with. You know, I think Oprah’s always talking about her "simple joys" and Isaiah is my simple joy, the simpleness of his giggle, smile, eye rolls when I say something silly or dumb, or his determination. He is my simple joy and my greatest joy. Thanks for reading my CMV story!!
- Submitted by his mother, Jennifer Stall
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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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..."