CMV - my story. support group / raise awareness

[Nicole]

My son is now 2.

When my son was born 2 weeks early, weighing 6pound 13ounces. he was not breathing, after resuscitating the noticed he had an enlarged spleen and low platelet count. This of which was CMV. He was taken to the neo-natal ward and extensive tests were done. My son looked like a pin cushion. After 6 hours I actually got to meet my son (I had a brief 2 seconds to see him before they rushed him off).

For the next 24 hours he was kept in NCIU and was monitored closely.

At 5 weeks we were back in hospital for failure to thrive. not putting on any weight and vomiting up most feeds.

At 9 months old bub started physio as he wouldn't sit, and only started crawling properly the day after his first birthday. He has seen Physio, speech and OT therapits weekly since then.

The definition of CMV is:

Facts - Prevention - Testing - Terminology - FAQs - Tough Questions about CMV

About Cytomegalovirus (CMV)

Cytomegalovirus (CMV) is a common infection that is usually harmless. Anywhere from 50-80% of adults have been infected with CMV by the time they reach 40 years old.

Most healthy children and adults infected with CMV have no symptoms and may not even know that they have been infected. Others may develop a mild illness when they get infected and have the following symptoms: fever, sore throat, fatigue, and swollen glands. Since these are also symptoms of other illnesses, most people don't realize that they have been infected with CMV.
About Congenital CMV

CMV can cause serious disease in babies who were infected with CMV before birth (referred to as congenital CMV infection). 1 in 150 children is born with congenital CMV infection. 1 of every 5 children born with congenital CMV infection will develop permanent problems (such as hearing loss or developmental disabilities).

Temporary problems (at birth): Hearing Loss, Vision Loss, Mental Disability, Lung Problems, Bleeding Problems, Spleen Problems, Liver Problems, Growth Problems

Permanent problems: Hearing loss, Vision loss, Mental disability, Feeding issues/Failure to Thrive (FTT), Sleeping issues, Sensory issues, ADHD/Autism, Small head/small brain (Microcephaly), Intercranial Calcifications, Cerebral palsy, Seizures, Death.

More children have disabilities due to congenital CMV (cytomegalovirus) than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS. In a recent survey of women in the United States, only 22% had heard of CMV, compared with 97% who had heard of Down Syndrome and 98% who had heard of HIV/AIDS (Jeon 2006). A more recent study found that only 14% of women in the United States had heard of CMV (Ross 2008).


Marcus has learning difficulty and is delayed in walking, talking and eating solid foods. He will eat most foods, but when it comes the food that have weird textures ie, fruit and vege, he won't touch, therefore wont eat.

Marcus has only just started walking at age 2, and has 3-4 words. He is only just relating words to noises (he know knows a lion goes rar) and location body parts (he know knows where his head is by pointing). We have even hit another milestone by pointing out Captain feathersword in a book. This isn't very big for a lot of people, but massive for us, as it shows his brain is still growing, developing and progressing.

I only know of America that raises awareness for his virus, so I hope to be able to start my own CMV foundation to help find a cure, raise awareness and stop CMV.

[Kazbah]

Thankyou for sharing information about this illness / disease, and I hope Marcus continues to improve. I have a huge smile on my face with the RARRRR of a lion, as he sounds like my son there.

Good luck on your journey together.

[Shades]

Is congenital CMV only a risk if you contract it while pregnant or is it a risk for every pregnancy once you are infected?

[Daytona's Mummy]

I had never heard of this before, Thankyou for raising awareness for this virus. How do you become infected with it? are there ways to avoid it? Also, I understand the problems it causes but what exactly is it? I'm sorry to be asking all these q's but it's obviously something very serious yet so many people don't know about it including myself! I can't believe it's never mentioned, like by your ob when you fall UTD or even how I have never even seen anything about it on tv!!!
It's so good your getting this information out there, it's so important ! Good luck on your mission!

[Nicole]

It is a neurological virus that can affect everything that was mentioned earlier.

Prevention is hard as its like a common cold. Most people have had CMV, and lies dormant in the body, but with me in went eutro and was one of the 2% to get the side effects.

If you've already had it i think you're fine. only 50% of women who get it while pregnant will pass onto their newborn.

[buliej]

Thank you for the information.

Can you be tested for it either before pregnancy (to see if you've had it an dare thus immune) or even during pregnancy to make sure that you don't have it?

[Nicole]

i'm unsure of that, just google it, of ask your local gp

[Shades]

I think it must be possible to be tested because my son is donor-conceived and when choosing the donor the profiles to look through had the CMV status on them, presumably so that if you are negative you don't choose a positive donor and risk an active infection while pregnant/getting pregnant. So there must be a test that can be done.

[Kaydee]

Thank you for that information. I was actually tested for immunity this pregnancy (I paid only a small amount, I live in Germany) and after I was told I am not immune. So I did some research and afterwards I was actually surprised I didn't know anything about it! I'm usually very careful with everything and it scared me that I knew nothing about it with my last pregnancy.

[2CheekyMonkeys]

yep you can be tested for it. there are signs up everywhere in our staffroom (child care workers.. mainly women of child bearing age around children who are little germ factories). they suggest that you get tested for immunity before falling pregnant. i did think though that once you had it (previous to becomming pregnant) that it was no harm to your unborn baby.

nicole, thanks for raising awareness and sounds like your little one is going from strength to strength.

oh, its just a simple blood test. (i think)

[Nicole]

Yes just a blood test. And if you do have it you're fine. I got it while pregnant.

THinking of Beginning an Australian charity to raise aware of CMV. Was talking to the FECS team today about it. A support group for Australian parents with CMV children (there is only one in the USA ) and raise money to help find a cure, and to raise awareness at hospitals, doctors and daycares about how to help prevent it.
think it will be very... challenging, as many people don't know, or choose to ignore it
and need to see if any studies are being done here in Aus, or whether the money would go over seas

Does anyone have any suggestions?

[*Twinkle*]

Thank you for sharing your story with us Nicole. My Dad is one of the few adults where CMV has reared its ugly head and caused MASSIVE health problems. He will never recover. Starting some awareness and a foundation is a fantastic idea hun and I for one back you all the way.xo

[lozzy_mac]

Hi Nicole
So sorry to hear about your son but so much respect for how you are nuturing him and are committed to raising awareness

Theres a guy doing CMV research at westmead millenium institute- not specificially into contraction during pregnancy, more to do with how it stays dormant in the body after you contract it. (He's part of the same faculty as me at USyd)
However, he probably knows all about the research thats being done around the world and could help put you in touch with the right person.

http://sydney.edu.au/medicine/people...les/barrys.php

Academics are notoriously bad at replying to emails from the general public. Keep your message short and concise, and if you dont get a reply within a week or so, try contacting WMI directly (if they think you might want to fundraise for them they should get back to you very quickly!!)

Wishing you all the best for you and your son and your cause!

[Nicole]

Thought i'd continue and update this post.

My son is now 2.

When my son was born 2 weeks early, weighing 6pound 13ounces. he was not breathing, after resuscitating the noticed he had an enlarged spleen and low platelet count. This of which was CMV. He was taken to the neo-natal ward and extensive tests were done. My son looked like a pin cushion. After 6 hours I actually got to meet my son (I had a brief 2 seconds to see him before they rushed him off).

For the next 24 hours he was kept in NCIU and was monitored closely. He was then released and I was allowed to have him in my room permanently. We then had trouble attaching for breast feeding and after 3 days a nurse finally listened to me after his weigh in and being lower then his birth weight by 20%. He was immediately put onto formula while i expressed milk and fed it to him through a syringe then finally a bottle. We were in hospital for a total of 6 days. I too had gotten very sick.

At 5 weeks we were back in hospital for failure to thrive. not putting on any weight and vomiting up most feeds from severe reflux. He was admitted into Peadiatrics and was put on a nasal gastric tube for 24 hours and then was slowly introduced back onto the bottle.

At 9 months old he started physio as he wasn't able to sit, and only started crawling properly the day after his first birthday. We began seeing physio, speech and occupational therapy fornightly until his second birthday.

Bub finally accomplished walking at 2 years and 2 months. It was later discover that he has hyper-mobility as well which had caused mixed signals to the brain on how to control the extra flexibility he has.

He turns 3 next month and over the past year we have battled with severe sensory issues which is only letting him eat vegemite sandwiches and yoghurts. specific little chocolates and the occasional nugget happy meal or chips. As a result of the reduced food groups we are now dealing with his weight as he is almost at a critical point and having to consider a peg/g-tube (a tube inserted into the stomach and fed via that tube). Fortunately we've gained 1.6kg and starting to pork up with the assistance of polyjoule. We are investigating the option of an intensive feeding program at the Royal Brisbane hospital that will hopefully help with desensitizing him with certain textures and trying to get him to explore new food.

With all these issues we are also delayed in his development of communication, and understanding simple instructions. We have learnt the basic sign language signs for food, help, more, finished. These help with his communication and frustrations.

c-Cmv (congenital Cytomeglovirus) has caused many upturns in my sons life so far, and I am in the process of trying to get a foundation up and running here in Australia to raise awareness and to educate women to be tested before trying for children.

[Floweryfields]

CMV is well heard of in childcare -so I can only speak from what we are advised - as it is mainly contracted from children under the age of 2 years. You can be tested prior to pregnancy (or during) to know if you are immune of not (if you have come in contact with it in your life before - most childcare workers have been).
In our industry we are instructed not to work with children under 2 if we are not immune - it is contracted from faeces, urine and saliva. They recommend careful hygeine - using gloves when changing nappies, etc and washing hands well.
I've heard of one case in childcare where someone did have a baby affected by it and she sued her employers successfully.

[Smita.ThatslifeMagazine]

Hi Nicole,

I've just read your thread about your son.

I have actually just read about CMV and we're looking to spread awareness on this condition in our women's weekly magazine.

If you were interested in telling your story as part of this please contact me for more information. Email: smita.mistry@pacificmags.com.au

Hope to hear from you soon.

Kind regards,

Smita

Thought i'd continue and update this post.

My son is now 2.

When my son was born 2 weeks early, weighing 6pound 13ounces. he was not breathing, after resuscitating the noticed he had an enlarged spleen and low platelet count. This of which was CMV. He was taken to the neo-natal ward and extensive tests were done. My son looked like a pin cushion. After 6 hours I actually got to meet my son (I had a brief 2 seconds to see him before they rushed him off).

For the next 24 hours he was kept in NCIU and was monitored closely. He was then released and I was allowed to have him in my room permanently. We then had trouble attaching for breast feeding and after 3 days a nurse finally listened to me after his weigh in and being lower then his birth weight by 20%. He was immediately put onto formula while i expressed milk and fed it to him through a syringe then finally a bottle. We were in hospital for a total of 6 days. I too had gotten very sick.

At 5 weeks we were back in hospital for failure to thrive. not putting on any weight and vomiting up most feeds from severe reflux. He was admitted into Peadiatrics and was put on a nasal gastric tube for 24 hours and then was slowly introduced back onto the bottle.

At 9 months old he started physio as he wasn't able to sit, and only started crawling properly the day after his first birthday. We began seeing physio, speech and occupational therapy fornightly until his second birthday.

Bub finally accomplished walking at 2 years and 2 months. It was later discover that he has hyper-mobility as well which had caused mixed signals to the brain on how to control the extra flexibility he has.

He turns 3 next month and over the past year we have battled with severe sensory issues which is only letting him eat vegemite sandwiches and yoghurts. specific little chocolates and the occasional nugget happy meal or chips. As a result of the reduced food groups we are now dealing with his weight as he is almost at a critical point and having to consider a peg/g-tube (a tube inserted into the stomach and fed via that tube). Fortunately we've gained 1.6kg and starting to pork up with the assistance of polyjoule. We are investigating the option of an intensive feeding program at the Royal Brisbane hospital that will hopefully help with desensitizing him with certain textures and trying to get him to explore new food.

With all these issues we are also delayed in his development of communication, and understanding simple instructions. We have learnt the basic sign language signs for food, help, more, finished. These help with his communication and frustrations.

c-Cmv (congenital Cytomeglovirus) has caused many upturns in my sons life so far, and I am in the process of trying to get a foundation up and running here in Australia to raise awareness and to educate women to be tested before trying for children.

[Nicole]

I've decided to create a blog about this if you wanted to follow. My Story

[Nicole]

Well,

Marcus is 4 now. diagnosed with on the spectrum autism. We're now talking, fully toilet trained (apart from nights) and working on formulating sentances and starting to draw