Congenital CMV

Faith - posted on 04/30/2012

I'm a new young mom. I had a perfect pregnancy, no problems at all. When u was around 7 months pregnant my doctors told me that my son had hydrocephalus, or dandy walkers syndrome. I spent te last two months of my pregnancy thinking he'd have a brain shunt put in and be fine. Then when Dakota was about 2 1/2 months old he caught RSV, and was in the hospital for 2 1/2 weeks. While there they were worried because his head size was smaller than normal. They did a urine test and told us he had congenital CMV. He's 4 1/2 months old now. His muscles are very tight, and his arms shake kind of like the startle reflex they have as infants. His legs also seem to vibrate if pushed in a certain way. So far that's all we've noticed.

Katherine - posted on 10/22/2009

Oh wow! Its nice to meet other mom's who went through some of things I did....

When I was three months pregnant with our son, I got really sick for like 10 days it seemed like. I felt real weak and thought it was the flu. It soon passed and life went on as normal. I had a totally normal pregnancy. When I was six months pregnant, I went in for an ultrasound. They called me back the next day and wanted to do it again. They told me his head wasnt growing. They said I would have to wait til he was born.
When he came out, they did all kinds of testing on him. They said that he might have cataracts. It turned out he had sclero cornea. Which is where the white of the eye grows over the eyes and doesn't stop where its supposed to. He didnt fully open his eyes for two weeks. The doctors came back and said he had the antibodies for CMV. I had never, ever heard of that in my entire life. The doctors had NO information to give me. Nobody here in Yuma had a child affected by it. I felt so alone.
Later on, I found a website called stopcmv.com. Its a great place to meet other moms and dads with children that have been affected by it.
We had a trial getting him to chew his food. He is micro cephalic, blind, has SID (almost always forget to mention that one...I'm so used to it...he he), and has spastic CP. He laughs sooo much and is such a joy to have around.
I cant get him to drink from a cup. All he wants to do is blow bubbles...any body with that same problem?
If you wanna know more, just msg me.

Kat

Lisa - posted on 09/14/2009

YES!!!!!! Go to the CMV website... there are plenty of Mom's there with the same issues and events in your area for just the CMV children and their families......
www.cmvfoundation.org Every year there is a Rock-N-Rollathon at the Detroit Zoo in Detoit, Michigan. I'm not quite sure what programs and evetns they have in your area, but all you have to do is send them a message and you'll be able to meet other Moms just like you who are victims of that nasty virus!
My daughter, Emma was born with Congenital CMV on August 14th, 2007. My ENTIRE pregnancy was absolutely normal in EVERY way. I ate the right foods...lots of veggies and salads...(ok, ok..I ate ice cream too). I only gained about 25 lbs. I felt her kick just as strong as my first baby. NORMAL!!!! We didn't know anything was out of the ordinary... until the moment she was born. At full term, she only weighed 5 # 4 oz. We were crushed, considering our first was 8 # 4 1/4 oz. We took her home 5 days later with the doctors and nurses thinking that we just had a very cute...petite little girl. The problems came a day later...I couldn't nurse her. She just didn't want to stay latched on. She didn't really want to eat. I actually had to set my alarm clock to get up and feed her b/c she wouldn't wake up on her own! The nurse told me that I was doing it wrong and to find a quiet place and KEEP TRYING!!!!! I couldn't believe her. This wasn't my first time nursing so I know it wasn't just me. Anyways, so about two days after being discharged after giving birth, she ended up in the hospital b/c her pulse rate and oxygen levels were WAY too low. She ended up having pneumonia along with all the other symptoms of the CMV.... enlarged liver, enlarged spleen, microcephaly w/ calcifications on the brain, deafness...the list just goes on and on! She has a hard time eating... she gags on just about ANYTHING. She is on the feeding tube and that's how she gets 99% of her nutrition (the other 1% is from the only thing I can get her to eat orally....Cheetos brand popcorn puffs!) We are currently trying to work with our local Early On Program to get her into their feeding program....We'll just have to wait and see!
If you want to know more, just send me a message!


~Lisa Newsome~

Ashley - posted on 09/05/2009

Hi, my name is Ashley. I have an 11 month old son that was born with congenital CMV. I think we found out something was going on when we found out his sex, but didn't really understand the extent of what could happen to him. They planned on inducing me about a week early because they saw that he had fluid on his brain, but there wasn't enough amniotic fluid to last until the date they had me down for. I went to the hospital that day to deliver and everything soon started there after.



They admitted him before he got released from the newborn nursery, and we then spent the first month of his life living in the hospital room. He failed all his hearing tests, 6 I think, had a heart murmur, jaundice, and were keeping an eye on his gi tract. The fluid on his brain didn't measure big enough to drain, and we really don't know what will happen of it.



He was treated while in the hospital, had a central line put in so we could go home for a few days and to cut back on the amount of times he was being poked. He had a liver biopsy to make sure everything was ok, Thank God, the biopsy came back normal and he seemed to bring his numbers somewhat back to normal.



Once he had his central line taken out, it seemed everything was clearing up for him. Couldn't hear the heart murmur anymore, wasn't getting the meds anymore, we were very optimistic...all the doctors were releasing him of there care and no more "living in the hospital". His hearing is still severally gone. But we are working on getting a cochlear implant, and were planning on doing both ears so he could hear as well as possible.



Although, we just found out last month he has polymicrogyria, which means too many small folds on the brain. Luckily, he only has it on the left side of his brain. But he doesn't use the right side of his body very well due to it and is behind on his motor skills. He isn't even sitting up on his own yet. The polymicrogyria may not allow us to get him a cochlear implant in each ear, as to he might not be able to use his right ear at all.



We are very thankful for our son, and very proud of him. I wouldn't take this experience away for anything in the world. He is perfectly fine just the way he will be and we are trying to help and fix what we can for him. We are very lucky to have early intervention working with him, and finally they have sent us to occupational therapy twice a week, as well as physical therapy twice a week.



It has been a very big impact on my life, I can only work nights now, and that's hard with all the appointments during the day, AND trying to work with him to catch him up to par. He has come a long way with early intervention and the wonderful doctors he has been blessed to come in contact with.



I'm sure I have left much out, but was trying not to write a book for you! Lol, it seems I have anyway. Would love to hear your story and everything you have heard. Haven't met or talked with any CMV moms, but just replied to one conversation before yours. I can't wait to hear any stories anyone has with CMV! For it to have such a big impact on your life, doesn't seem like many people are aware of it. I hadn't heard of it before my pregnancy. Ok, I'll stop going on now. Hope to hear from you soon!

Sarah - posted on 09/01/2009

Hi Callie.

My name is Sarah, my daughter Hannah, was born with congenital CMV too. She turned 4 in June and it has been a long road. I'll condense my story....before birth we were told she had fluid in her brain and would need a stint put in her head to drain the fluid after delivery. Turns out they were wrong, and sd "oh, she has CMV!" We had NO idea what this was. She was treated with Gancyclovir, 24 hrs. a day for 6 wks. we basically moved into the hospital. We were told it would stop any further hearing loss she may encounter, since she failed all newborn hearing screening tests. Fast forward and she was later diagnosed w/mild to moderate hearing loss and was fitted w/hearing aids last Oct. This spring her teachers sd she was not doing as well in school as they would have thought. We had her do a sedated ABR hearing test at Univ. of VA only to find out all the hearing she did have, had completely disappeared and she was now deaf. This news came the same day I turned 36 wks. pregnant, so it was a bit much to handle.

Hannah received cochlear implant surgery last Tues, 8/25 and her implants will be activated in 1 month. It's been a long road and I've struggled with so much guilt as to how I contracted CMV during my pregnancy. I was told I could have simply touched a grocery cart after another person who was sick.

I hope all is well with your family and with Andrew. I know absolutely nobody in the same situation as our family.

Keep in touch.

Sarah

Lacey - posted on 08/20/2009

Where do I start…..? My pregnancy started out normal and uneventful., everything seemed to be perfect.





I then got the phone call that would change the rest of my life!





A few days earlier I had a quad screen done. I didn't think much of it. They were calling me to tell me that I had a possible Down Syndrome baby. They scheduled me for an ultrasound, at 18 weeks where we found out that we had another little girl on the way. We also found out that she had Eccogenic Bowel and Intrauterine Growth Restriction. They put me on bed rest and had at least 1, sometimes 2 ultrasounds a week. After that it was a pretty uneventful pregnancy.





Leah was induced at 36 weeks. She was born 1/15/08 weighting 5lbs 15oz. She was beautiful! We soon found out that she did not have Down Syndrome, but she did have Petechi all over her body. They took her to the nursery where they did some blood work where they found out that her platelets where low. Extremely low at 17,000 (normal range starts in the 200,000).





Within 2 hours of being born they where transferring her to another hospital with a level 2 NICU, 20 minutes away. I was discharged and went to that hospital also. When we got there we were told that they were running a lot of different tests and that some took a few days to come back. We were told to just wait and see.





Leah received 4 platelet transfusions. She just wasn't getting any better. So they decided to transfer her to another hospital. While being transferred to this hospital we found out that she was CMV positive. What did that mean? What was CMV? We had never heard of it.







They continued to give Leah 4 more platelet transfusion. We saw many different specialists. They just continued to tell us that they didnt know what would happen with Leah. We then spoke to a wonderful man who finally knew something about CMV. He told us what CMV was, what it could mean for Leah, and what options we had. He told us that Leah had an enlarged liver and spleen. He said that this is most likely where all of her platelets where going, her body was eating her platelets alive. He then told us about this Chemo therapy medication that they can give that can stop any further damage being done, especially hearing loss and blindness- it was called Gancycolvir.





After considering it, looking at all the positives and negatives we decided that we would try it. They had to place a PICC in her to receive this medication. That night the PICC was placed in her scalp. They started her medication and within 2 doses her platelets began to stabilize, her liver and spleen where already receeding in size and she seemed to be taking the medication very well.





Leah received a total of 8 platelet transfusions.







The next day we had an ultrasound done on her brain where they found spots of Calcification. She then went in for an MRI where they found enlarged ventricles, 4 spots of calcification, and white matter. We also learnt that Leah's brain was smooth, a normal brain has bumps and ridges in them, Leah's does not.





Leah also received a hearing test that she failed in the hospital and an evaluation from the Physical Therapist. PT had very little concerns at this time, but referred us to come back in 2 months.







Leah was in the hospital a total of 17 days. Around 13 days old I asked if I could take her home on medication. And the hospital agreed that if I was willing to get Chemo certified and learnt how to give her medication to her. 4 days later she came home.





We had doctor's appointments everyday. It was very hard but not as hard as having her in the hospital.







Over the next month and a half we had lots of Drs. appointments and not a lot of answers. Everyone kept saying we will know more at 6 months, we will know more at a year.





I finally learned which appointments were important and which ones were not. At 2 months we went in for a hearing test. We then learnt that she had moderate to severe loss in her right ear and severe to profound loss in her left. She was fitted for hearing aids but they havent been doing to much for her. She honestly responds better with them out. We just yell alot. We are also learning SEE signing. Leah is watching our hand and mouth and is very observant of what we are doing. She has yet to learn any, but that will come with time.





We also saw a Neurologist when she was about 2 months old who diagnosed her with Cerebral Palsy. Leah at the time was not showing signs of delay but they were soon notices. Leah is 19 months old and is just now starting to crawl. She has been sitting up when proped for almost 8 months now. She does not eat and solid food of any kind. But she loves her bottle.





As for her eye sight she a lot of hemeraging

from being born, but it has cleared up over time. As her platelets stabilized her body could finally begin to heal. We were cleared from the eye Dr. at 4 months of age. He didn't want to see her for 1 year.







As for the Gancyclovir, She was treated for 7 ½ weeks. She had treatment 2 times a day over 1 ½ hours. The virus was dying. When she was born her virus load was at 65,000. 3 weeks later it was 140. After she was taken off the medication it was always a possibility that the virus could reactive within her system and we would have to treat again. And that is was happened.





4 weeks later all of her symptoms that she had at birth were back. Her virus load this time was 1.5 million. She was a very sick little girl. We wondered if we had done the right thing by treating her. We placed another PICC and began treatment again with Gancyclovir. 3 weeks later the virus load was at 540. We had a sigh of relief. After another 3 more weeks of treatment we switched from IV therapy to and oral medication called Valgancyclovir. She did 8 months of Valgnacyclovir. She came of with no problems and no side effects.



I hope this is helpful to you. Let me know if I can be of any help to you and your son.

Thanks

Lacey