Bad news: We are retiring this blog and will no longer be posting here for Stop CMV...
Good news: A new blog for Stop CMV has been created at blog.stopcmv.org that will be updated more regularly with more content, including news, topical information, and tips, as well as ongoing features and contributors!
Don't forget--you can always visit the Stop CMV website at http://www.stopcmv.org/ and can always link to our new blog from the homepage!
Thanks to all of those who have been following us so far...stay with us and keep reading! We look forward to your input, interaction, and involvement in the CMV Action Network!
(Note: The new Stop CMV Blog will replace both the "News" feature on the Stop CMV website at http://www.stopcmv.org/news.php and this blog at http://www.stopcmv.blogspot.com/!)
Monday, September 13, 2010
Monday, April 26, 2010
Help us Stop CMV during National Congenital Awareness Month in June!
Photos can be taken in any location, within any context, and in any style but should include “Stop CMV” written on the palm of a hand somewhere in the image.
We are looking forward to this campaign as an opportunity to leverage our CMV Action Network and explore the power of that network. While we are looking for a large quantity of images, we are also encouraging our members and supporters to leverage the power of their own personal network. We are hoping to engage several segments of the public during this campaign to mobilize this message into various groups, subcultures, geographic locations, etc.
Consider leveraging your personal network to request images of people within the following categories:
- Regional - cities, beaches, mountains, landmarks, other countries, etc.
- Celebrity- musicians, athletes, actors, DJs, artists, politicians, notable figures, etc.
- Lifestyle- hobbies, careers, sports, outdoors, subcultures, interest groups, etc.
With CMV prevention measures rarely communicated to women, Stop CMV wants to increase the public profile of congenital CMV to save tens of thousands of babies each year from death and disability. You can help us by joining your hand with ours! We look forward to your participation in this campaign and look to this as a major opportunity to engage the public in congenital CMV awareness!
Visit http://www.StopCMV.org/june.php for more information!
Stop CMV!
Thursday, April 22, 2010
Perez Hilton helps to Stop CMV!
It's an AWESOME morning!
Stop CMV made Perez Hilton's blog today!
http://perezhilton.com/2010-04-22-a-worthwhile-cause-560#respond
13 million readers a month! His readership is our target demographic with approximately 85% being women between the ages of 21-34! This is such a huge awareness opportunity!
HUGE THANKS to the hustle team Casey Famigletti and Jenny DiBenedetto for pitching this!
STOP CMV!
Stop CMV made Perez Hilton's blog today!
http://perezhilton.com/2010-04-22-a-worthwhile-cause-560#respond
13 million readers a month! His readership is our target demographic with approximately 85% being women between the ages of 21-34! This is such a huge awareness opportunity!
HUGE THANKS to the hustle team Casey Famigletti and Jenny DiBenedetto for pitching this!
STOP CMV!
Monday, March 1, 2010
Stop CMV March Membership Drive
Join the Cause, Bring 5 Friends!
Why? Because “People = Progress”!
Join and help recruit today!
www.causes.org/stopcmv
Why does Stop CMV membership matter? Because "People = Progress"!
Nothing is going to significantly change in the congenital CMV movement until there are millions of people pushing an agenda of awareness and prevention while demanding action. As awareness of Congenital CMV grows, the need to gather and organize talent from all walks of life is essential to pushing awareness and solutions forward. Stop CMV's ability to help provide solutions for those in need now while creating the crowd necessary to create the long-term changes needed are crucial to any progress we make as an organization and community.
“We have a unique advantage in the marketplace of charitable organizations. We have a disease that the public largely hasn’t heard of--only 14% of women have heard of CMV,” says Janelle Greenlee, President and Founder of Stop CMV. “You can be genuinely spreading true awareness to your friends and family in your network because virtually nobody has heard of CMV.” Miranda Thomas, CMV mother and north Mississippi Area Representative, has been one of Stop CMV’s top online recruiters since the launch of the Facebook Cause page. “I’m so happy to see how many of my family and friends have joined the Facebook Cause. All I had to do was ask,” says Thomas. “They love my son, Dalen, very much and are very supportive.”
Join the Facebook Cause and help recruit today! Send friends the link to www.causes.org/stopcmv to make joining as easy as possible!
For more information about the March Membership Drive, recruiting tips and banner ads, visit http://www.stopcmv.org/membership.php.
Why? Because “People = Progress”!
Join and help recruit today!
www.causes.org/stopcmv
Why does Stop CMV membership matter? Because "People = Progress"!
Nothing is going to significantly change in the congenital CMV movement until there are millions of people pushing an agenda of awareness and prevention while demanding action. As awareness of Congenital CMV grows, the need to gather and organize talent from all walks of life is essential to pushing awareness and solutions forward. Stop CMV's ability to help provide solutions for those in need now while creating the crowd necessary to create the long-term changes needed are crucial to any progress we make as an organization and community.
“We have a unique advantage in the marketplace of charitable organizations. We have a disease that the public largely hasn’t heard of--only 14% of women have heard of CMV,” says Janelle Greenlee, President and Founder of Stop CMV. “You can be genuinely spreading true awareness to your friends and family in your network because virtually nobody has heard of CMV.” Miranda Thomas, CMV mother and north Mississippi Area Representative, has been one of Stop CMV’s top online recruiters since the launch of the Facebook Cause page. “I’m so happy to see how many of my family and friends have joined the Facebook Cause. All I had to do was ask,” says Thomas. “They love my son, Dalen, very much and are very supportive.”
Join the Facebook Cause and help recruit today! Send friends the link to www.causes.org/stopcmv to make joining as easy as possible!
For more information about the March Membership Drive, recruiting tips and banner ads, visit http://www.stopcmv.org/membership.php.
Monday, February 15, 2010
Congenital CMV Parents' Stories
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...
Every year in the United States alone, thousands more children are born with congenital CMV. Their parents experience an unspeakable fear and pain as they learn more about this disease and its effects and as they piece together what life will look like for their children and their families.
Please visit http://www.stopcmv.org/stories.php to read their stories.
Every year in the United States alone, thousands more children are born with congenital CMV. Their parents experience an unspeakable fear and pain as they learn more about this disease and its effects and as they piece together what life will look like for their children and their families.
Please visit http://www.stopcmv.org/stories.php to read their stories.
Tuesday, February 2, 2010
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.
As you inform friends and family members about your baby’s diagnosis of congenital CMV, they ask questions about how you got it and what may happen to your baby. When you express your concern and don’t have all the answers for them, they search on the internet and find information that is equally confusing and can be taken out of context. The same words, "herpes" and "HIV", are thrown back in your face. You are asked if CMV is an STD and if you were promiscuous during your pregnancy. Your spouse may question your fidelity before and during your pregnancy. Your family, friends and community may ostracize you thinking that your child has HIV or an STD.
They may also read about CMV contagion issues and assume that CMV is dangerous to everyone and that your child could infect healthy people and cause them to experience disability or death. They may also read that CMV exposure during pregnancy is dangerous and may unfairly shun your child and family out of fear that their own pregnancy may be compromised and endangered by exposure to your child. They may not realize that you, very likely, caught CMV from a healthy child while you were pregnant and that healthy children whose CMV status is unknown and statistically high pose the greatest risk to pregnant women.
You may see a decline in contact from your friends and family. Upon learning of your baby’s diagnosis, family and friends who expressed eagerness to visit and meet your baby may cancel their visits, not call at all or never speak to you again. Those who previously arranged to help you with household chores and with your other children may also change their mind and decide to opt out for concern of their own health and safety.
You may be disinvited from playgroups out of fear for the other children. There may be an assumption that your child could infect and disable otherwise healthy children in the group. You may not be able to find a daycare or preschool that will accept your child. You may have to field questions from babysitters or caregivers about your child’s diagnosis and about the perceived impact that your child’s presence may have on the caregiver, the other children and on their business.
You may choose to stop telling people about your child’s diagnosis out of fear or shame. When meeting with social workers and other professionals, you may try to hide your child’s true diagnosis and instead use a secondary diagnosis, such as cerebral palsy or hearing loss, to qualify for services. When your social workers or other professionals hear about your child’s real diagnosis, they may ask to be removed from your child’s case out of fear for their own health and safety. You may have difficulty obtaining a new staff member as word spreads about your child’s diagnosis within the agency. When your child begins preschool or elementary school, there may be some concern expressed about your child’s diagnosis. You may have difficulty in explaining to the teachers and staff that your child poses no threat to anyone in the classroom or on the campus. Your child may have difficulty making friends as other parents find out about your child’s diagnosis and discourage their children to play with yours.
In addition to the grief and other emotions experienced after giving birth to and while parenting a disabled child, you may experience shame, anger, sadness, depression, and loneliness. You may be angry that you were never warned of the dangers of CMV exposure while pregnant and angry that you were not allowed to make informed choices while pregnant to protect your unborn child. You may be angry that you and your child will wear a cloak of suspicion and shame for many years after your child’s birth.
You may be sad that you were deprived of the experience of birthing and raising a healthy child. You may wonder why your child could not have been born with one of the more visible and socially acceptable birth defects such as Down Syndrome, Spina Bifida, or even Autism. These things may cause you to be depressed and may compromise your mental health as well as the bonding with and care of your child in the early days, weeks and months of their life.
You may experience genuine loneliness and isolation and believe that you are one of the "rare" cases of CMV. You may believe that you are the only one in your area, your city, and your state. You may wonder if there are others around you and look at other parents of impaired children in public places and wonder if they also carry your quiet burden and shame. You may wonder where the other parents are hiding and why they didn’t sound their voices louder to warn you and spare you and your child of this anguish.
I write this in tears as an apology to you, the parents of children born with congenital CMV, as a reprimand to others who have hurt you or your child out of misunderstanding and fear and as a loud and clear warning to all. My name is Janelle Greenlee, founder and president of Stop CMV and The CMV Action Network, and this is my real CMV story.
My twin daughters were born affected with congenital CMV in August of 2003 and suffer the severe and irreversible effects of this virus daily as they labor to breathe, eat, and move. Their sweet beautiful souls reside in bodies devastated by crippling spasticity, pulling bone from delicate bone, eliminating all hope of purposeful movement. As they live in a world of silence and simplicity, their minds not capable of understanding their hindered existence, and when they can feel a hint of despair as they watch their peers live rich, active, engaging lives, they have been silenced and can only communicate their sadness through a gentle fuss or cry. And we love them more than anyone can love a child, a compromised child, because we, too, have been compromised–injured and impaired. We fight for their dignity which has been scarred by their unfortunate diagnosis. We fight to give them any semblance of a normal life as we parade them from doctor to doctor, specialist to surgeon, therapist to teacher. We painstakingly work to allow them to more easily live, breathe, eat, sleep, develop, behave, hear, see, communicate, and move.
We did not do anything wrong. We did not sleep around. We did not use drugs. We did not drink alcohol. We did not engage in any particularly unsafe behavior while pregnant. We worked as teachers, daycare employees, nurses, therapists, and mothers. We unknowingly acquired this virus while caring for children, perhaps even yours.
I invite you to take this chance to learn about CMV and share the information with those around you. Pregnant women may not hear about this from their doctor but they can hear about it from us. Not every child may be born free of congenital CMV, but we can take these lessons and give friendship and support to those families, friends and neighbors that may be affected. You can help stop the needless suffering of so many families in your community and around the world by sharing this information about congenital CMV. Congenital CMV shouldn’t have to happen. This confusion, suffering and pain doesn’t need to happen. But awareness, change and progress won’t happen without your help. Please visit www.stopcmv.org to learn more about congenital CMV and how you can help us in our fight to STOP CMV.
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.
As you inform friends and family members about your baby’s diagnosis of congenital CMV, they ask questions about how you got it and what may happen to your baby. When you express your concern and don’t have all the answers for them, they search on the internet and find information that is equally confusing and can be taken out of context. The same words, "herpes" and "HIV", are thrown back in your face. You are asked if CMV is an STD and if you were promiscuous during your pregnancy. Your spouse may question your fidelity before and during your pregnancy. Your family, friends and community may ostracize you thinking that your child has HIV or an STD.
They may also read about CMV contagion issues and assume that CMV is dangerous to everyone and that your child could infect healthy people and cause them to experience disability or death. They may also read that CMV exposure during pregnancy is dangerous and may unfairly shun your child and family out of fear that their own pregnancy may be compromised and endangered by exposure to your child. They may not realize that you, very likely, caught CMV from a healthy child while you were pregnant and that healthy children whose CMV status is unknown and statistically high pose the greatest risk to pregnant women.
You may see a decline in contact from your friends and family. Upon learning of your baby’s diagnosis, family and friends who expressed eagerness to visit and meet your baby may cancel their visits, not call at all or never speak to you again. Those who previously arranged to help you with household chores and with your other children may also change their mind and decide to opt out for concern of their own health and safety.
You may be disinvited from playgroups out of fear for the other children. There may be an assumption that your child could infect and disable otherwise healthy children in the group. You may not be able to find a daycare or preschool that will accept your child. You may have to field questions from babysitters or caregivers about your child’s diagnosis and about the perceived impact that your child’s presence may have on the caregiver, the other children and on their business.
You may choose to stop telling people about your child’s diagnosis out of fear or shame. When meeting with social workers and other professionals, you may try to hide your child’s true diagnosis and instead use a secondary diagnosis, such as cerebral palsy or hearing loss, to qualify for services. When your social workers or other professionals hear about your child’s real diagnosis, they may ask to be removed from your child’s case out of fear for their own health and safety. You may have difficulty obtaining a new staff member as word spreads about your child’s diagnosis within the agency. When your child begins preschool or elementary school, there may be some concern expressed about your child’s diagnosis. You may have difficulty in explaining to the teachers and staff that your child poses no threat to anyone in the classroom or on the campus. Your child may have difficulty making friends as other parents find out about your child’s diagnosis and discourage their children to play with yours.
In addition to the grief and other emotions experienced after giving birth to and while parenting a disabled child, you may experience shame, anger, sadness, depression, and loneliness. You may be angry that you were never warned of the dangers of CMV exposure while pregnant and angry that you were not allowed to make informed choices while pregnant to protect your unborn child. You may be angry that you and your child will wear a cloak of suspicion and shame for many years after your child’s birth.
You may be sad that you were deprived of the experience of birthing and raising a healthy child. You may wonder why your child could not have been born with one of the more visible and socially acceptable birth defects such as Down Syndrome, Spina Bifida, or even Autism. These things may cause you to be depressed and may compromise your mental health as well as the bonding with and care of your child in the early days, weeks and months of their life.
You may experience genuine loneliness and isolation and believe that you are one of the "rare" cases of CMV. You may believe that you are the only one in your area, your city, and your state. You may wonder if there are others around you and look at other parents of impaired children in public places and wonder if they also carry your quiet burden and shame. You may wonder where the other parents are hiding and why they didn’t sound their voices louder to warn you and spare you and your child of this anguish.
I write this in tears as an apology to you, the parents of children born with congenital CMV, as a reprimand to others who have hurt you or your child out of misunderstanding and fear and as a loud and clear warning to all. My name is Janelle Greenlee, founder and president of Stop CMV and The CMV Action Network, and this is my real CMV story.
My twin daughters were born affected with congenital CMV in August of 2003 and suffer the severe and irreversible effects of this virus daily as they labor to breathe, eat, and move. Their sweet beautiful souls reside in bodies devastated by crippling spasticity, pulling bone from delicate bone, eliminating all hope of purposeful movement. As they live in a world of silence and simplicity, their minds not capable of understanding their hindered existence, and when they can feel a hint of despair as they watch their peers live rich, active, engaging lives, they have been silenced and can only communicate their sadness through a gentle fuss or cry. And we love them more than anyone can love a child, a compromised child, because we, too, have been compromised–injured and impaired. We fight for their dignity which has been scarred by their unfortunate diagnosis. We fight to give them any semblance of a normal life as we parade them from doctor to doctor, specialist to surgeon, therapist to teacher. We painstakingly work to allow them to more easily live, breathe, eat, sleep, develop, behave, hear, see, communicate, and move.
We did not do anything wrong. We did not sleep around. We did not use drugs. We did not drink alcohol. We did not engage in any particularly unsafe behavior while pregnant. We worked as teachers, daycare employees, nurses, therapists, and mothers. We unknowingly acquired this virus while caring for children, perhaps even yours.
I invite you to take this chance to learn about CMV and share the information with those around you. Pregnant women may not hear about this from their doctor but they can hear about it from us. Not every child may be born free of congenital CMV, but we can take these lessons and give friendship and support to those families, friends and neighbors that may be affected. You can help stop the needless suffering of so many families in your community and around the world by sharing this information about congenital CMV. Congenital CMV shouldn’t have to happen. This confusion, suffering and pain doesn’t need to happen. But awareness, change and progress won’t happen without your help. Please visit www.stopcmv.org to learn more about congenital CMV and how you can help us in our fight to STOP CMV.
Tuesday, January 26, 2010
Riley and Rachel's Congenital CMV Story
We learned that I was pregnant early in January of 2003 and had an early ultrasound to verify how far along I was. We learned at this 7 week ultrasound that we were expecting twins! We cried the whole way home and worried about how we would manage to handle our son, who was 16 months old, and 2 infants.
My pregnancy was immediately categorized as high-risk and I routinely saw my obstetrician as well as a perinatologist (an OB who specializes in high-risk pregnancies and deliveries). I received ultrasounds on a regular basis to chart the twins growth, and we found out at 11 weeks that we were expecting girls!
At one of my ultrasounds at about 18 weeks, brain abnormalities were noticed on "twin B" (Rachel) and excess fluid was building up within her ventricles, causing them to be enlarged. This was cause for immediate concern and I received an amniocentisis. My amnio ruled out any genetic causes but I was still advised to terminate the pregnancy. We elected to continue the pregnancy, measuring the fluid and monitoring Rachel's growth.
After being on bedrest since 21 weeks, I went to the hospital on the evening of August 8th. I was dilated to 4cm and was monitored overnight. The next morning, my OB decided to help me along and induce. My bloodwork was completed, IV inserted, epidural given, and then my water broke on its own. I was given pitocin when labor did not progress and then, upon examination, we found more water bags...my OB broke them and then things moved very fast. I dilated quickly to 10cm and, at 6pm that evening, I was wheeled into the surgery room in case of C-section.
My OB looked at the girls on ultrasound and discovered that Riley was engaged at +1, and that Rachel had gone breech. I began pushing at 6:25pm and Riley arrived quickly with a few pushes at 6:27pm. She let out a few cries and Daddy actually got to cut the REAL cord! My OB checked on ultrasound to see if Rachel had changed position and she was immediately engaged and coming down. She came four minutes after her sister, with minimal pushing, at 6:31pm.
Both girls were doing fine and were eventually breathing on their own and crying. Riley spent 6 hours in the NICU getting stabilized and spent her first night snuggled with me in the hospital bed. Rachel remained in the NICU and was taken off of IV fluid on her second day and began taking a bottle, working on getting her suction motion down. She was eventually able to stabilize her body temperature and drink a bottle well, and was discharged from the NICU at 3 pounds 13 ounces, on August 16th, a week after she was born.
While in the NICU, Rachel was observed to have Microcephaly, meaning "small head/small brain", and had an immediate MRI. Her MRI showed severe brain damage and a virus called CMV was suspected as the cause. Labwork was performed on Rachel and the following Tuesday, we learned that Rachel tested positive for CMV exposure in utero, which meant she was born with congenital CMV and that I had contracted the virus early in my pregnancy. We were told by the Neonatologist that there was a 90 percent chance that Rachel would be severely retarded or die. We were destroyed and came to learn that we knew NOTHING about this new word that was about to rule our life. We were told that we would have to keep Rachel separate from Riley and Garrett, that Rachel and Riley couldn't share towels, burp rags, pacifiers, etc. After further consultation with an Infectious Disease specialist, this advice was deemed unfounded and we were excited to learn that our girls could interact together safely, and with the rest of our family.
On the day of Rachel's discharge from the NICU, we were excited and went in to have our transition meetings. When we arrived, we were told that Riley's earlier test results showed that she, too, had been exposed to CMV in utero and they ordered an immediate CAT scan. Again, we were terrified because we had hoped to have at least one healthy twin.
Riley's scans showed calcifications/scar tissues in her brain that were charateristic of the CMV virus. We were told that Riley would most likely have a more positive outcome than Rachel but would also be at risk for the same problems, namely deafness, blindness, physical and mental retardation, cerebral palsy, and even death. Needless to say, that was the worst week of our life. Our family decided THAT DAY that our main concern was to give the twins (and our son, of course) everything that we could for however long we may have them and to love them for whatever and whoever they are, not what they aren't.
We were advised by our pediatrician and other Infectious Disease specialists to not use Gancyclovir on the girls after birth but still wanted to investigate further and find out our options. We spent a day at the ID department at UCLA with a doctor there who provided us very little reassuring information and seemed to not know very much about Gancyclovir which didn't really give us much confidence. When we asked if both girls should receive infusion or if just one of them (and which one), she had no answer. We elected not to do Gancyclovir and ended up having positive viral load draws when the girls were 3 months old so while we did not go the conventional route, we feel that things still went VERY well given the initial outcome.
The girls turned 6 in August of 2009 and, in many ways, we have two little girls with very different CMV outcomes but noted to be severe by their specialists.
Riley has calcifications on her brain and also has cerebral palsy. She is spastic quadriplegic, has received numerous botox injections and had muscle lengthening surgery for her hamstrings and inner thighs. She has found her ability to roll, prop herself up and tolerates positioning well. When we got her first gait trainer a couple of years ago, she immediately bolted for the front door and then to my purse. Many cylinders are firing on Riley, but we still have setbacks. Riley is profoundly deaf to 120 db, doesn't test well with hearing aids, was declined for a cochlear implant but has no vision impairment. Riley feeds herself from a bottle or sippy cup and has grown to tolerate more table foods. This last summer, I was able to make great progress in potty training Riley and she probably could stop wearing diapers if I trusted her just a little more. She is a hit both in her SH classroom and at playgroups and has many "healthy" friends her age who love to include her in play.
Rachel is my more severely impacted twin. Rachel has profound microcephaly and cerebral palsy as well. She is also spastic quadriplegic and had a dual hip resectioning performed in November of 2006, two weeks before I gave birth to her little brother. Rachel was also diagnosed in December of 2008 with Osteopinnia and needs to be measured regularly to detect possible fractures. Rachel is globally delayed and tests at about a 3 month level. She is also profoundly deaf to 120 db and has vision impairment, but has very cute glasses that she loves to wear. She is G-tube fed and had nissen fundoplication performed in the spring of 2008 but recently broke through it and continues vomitting. Rachel has fortunately fought off pneumonias in the past but has incredible difficulty in breathing. She has seizure disorder which has been well controlled and monitored over the years. Like her sister, Rachel has also developed quite a following in our community and has many little friends who love to visit, "pet" her and give her kisses.
Given Rachel's severe medical condition over the years, we made the difficult decision to place her outside of our home back in 2005. She had been in a state of medical decline for many months and we were feeling immense pressure to do our best for her and find solutions to these problems. Her specialists became uncooperative and frustrated by her symptoms and her pediatrician asked for us to remove him from her case. A wonderful teacher at the girls' special education preschool recommended to me that we place Rachel out of our home but retain all parental rights. We met with a couple of residential homes in our area that were in normal neighborhoods, run by families and nursing staff. The second one that we visited had a huge impact on me and made me feel the lightest and calmest that I had felt in months. The owner and I became immediate friends and Rachel began living there full-time in December of 2005. She shares a downstairs bedroom with another disabled little girl and they enjoy a full view of their lush, green backyard and occassionally get licked by the owner's golden retrievers. It has been the best and most wonderful arrangement for our family and I feel so blessed by having met this family and allowing them into our lives and into Rachel's life. They are so patient and gentle with her and are extremely supportive to us and our other children.
I have been so challenged but so blessed to have these sweet precious girls in my life. They have taught me so much and have humbled me far more than I ever could have imagined. While I initially wanted to eradicate the world of CMV and cause a firestorm to elicit change and raise awareness, at one point I had to be at peace with the diagnosis and my limited power in controlling what happened and what will happen from here. But I love every single day and thank God for every moment that I have with them.
My pregnancy was immediately categorized as high-risk and I routinely saw my obstetrician as well as a perinatologist (an OB who specializes in high-risk pregnancies and deliveries). I received ultrasounds on a regular basis to chart the twins growth, and we found out at 11 weeks that we were expecting girls!
At one of my ultrasounds at about 18 weeks, brain abnormalities were noticed on "twin B" (Rachel) and excess fluid was building up within her ventricles, causing them to be enlarged. This was cause for immediate concern and I received an amniocentisis. My amnio ruled out any genetic causes but I was still advised to terminate the pregnancy. We elected to continue the pregnancy, measuring the fluid and monitoring Rachel's growth.
After being on bedrest since 21 weeks, I went to the hospital on the evening of August 8th. I was dilated to 4cm and was monitored overnight. The next morning, my OB decided to help me along and induce. My bloodwork was completed, IV inserted, epidural given, and then my water broke on its own. I was given pitocin when labor did not progress and then, upon examination, we found more water bags...my OB broke them and then things moved very fast. I dilated quickly to 10cm and, at 6pm that evening, I was wheeled into the surgery room in case of C-section.
My OB looked at the girls on ultrasound and discovered that Riley was engaged at +1, and that Rachel had gone breech. I began pushing at 6:25pm and Riley arrived quickly with a few pushes at 6:27pm. She let out a few cries and Daddy actually got to cut the REAL cord! My OB checked on ultrasound to see if Rachel had changed position and she was immediately engaged and coming down. She came four minutes after her sister, with minimal pushing, at 6:31pm.
Both girls were doing fine and were eventually breathing on their own and crying. Riley spent 6 hours in the NICU getting stabilized and spent her first night snuggled with me in the hospital bed. Rachel remained in the NICU and was taken off of IV fluid on her second day and began taking a bottle, working on getting her suction motion down. She was eventually able to stabilize her body temperature and drink a bottle well, and was discharged from the NICU at 3 pounds 13 ounces, on August 16th, a week after she was born.
While in the NICU, Rachel was observed to have Microcephaly, meaning "small head/small brain", and had an immediate MRI. Her MRI showed severe brain damage and a virus called CMV was suspected as the cause. Labwork was performed on Rachel and the following Tuesday, we learned that Rachel tested positive for CMV exposure in utero, which meant she was born with congenital CMV and that I had contracted the virus early in my pregnancy. We were told by the Neonatologist that there was a 90 percent chance that Rachel would be severely retarded or die. We were destroyed and came to learn that we knew NOTHING about this new word that was about to rule our life. We were told that we would have to keep Rachel separate from Riley and Garrett, that Rachel and Riley couldn't share towels, burp rags, pacifiers, etc. After further consultation with an Infectious Disease specialist, this advice was deemed unfounded and we were excited to learn that our girls could interact together safely, and with the rest of our family.
On the day of Rachel's discharge from the NICU, we were excited and went in to have our transition meetings. When we arrived, we were told that Riley's earlier test results showed that she, too, had been exposed to CMV in utero and they ordered an immediate CAT scan. Again, we were terrified because we had hoped to have at least one healthy twin.
Riley's scans showed calcifications/scar tissues in her brain that were charateristic of the CMV virus. We were told that Riley would most likely have a more positive outcome than Rachel but would also be at risk for the same problems, namely deafness, blindness, physical and mental retardation, cerebral palsy, and even death. Needless to say, that was the worst week of our life. Our family decided THAT DAY that our main concern was to give the twins (and our son, of course) everything that we could for however long we may have them and to love them for whatever and whoever they are, not what they aren't.
We were advised by our pediatrician and other Infectious Disease specialists to not use Gancyclovir on the girls after birth but still wanted to investigate further and find out our options. We spent a day at the ID department at UCLA with a doctor there who provided us very little reassuring information and seemed to not know very much about Gancyclovir which didn't really give us much confidence. When we asked if both girls should receive infusion or if just one of them (and which one), she had no answer. We elected not to do Gancyclovir and ended up having positive viral load draws when the girls were 3 months old so while we did not go the conventional route, we feel that things still went VERY well given the initial outcome.
The girls turned 6 in August of 2009 and, in many ways, we have two little girls with very different CMV outcomes but noted to be severe by their specialists.
Riley has calcifications on her brain and also has cerebral palsy. She is spastic quadriplegic, has received numerous botox injections and had muscle lengthening surgery for her hamstrings and inner thighs. She has found her ability to roll, prop herself up and tolerates positioning well. When we got her first gait trainer a couple of years ago, she immediately bolted for the front door and then to my purse. Many cylinders are firing on Riley, but we still have setbacks. Riley is profoundly deaf to 120 db, doesn't test well with hearing aids, was declined for a cochlear implant but has no vision impairment. Riley feeds herself from a bottle or sippy cup and has grown to tolerate more table foods. This last summer, I was able to make great progress in potty training Riley and she probably could stop wearing diapers if I trusted her just a little more. She is a hit both in her SH classroom and at playgroups and has many "healthy" friends her age who love to include her in play.
Rachel is my more severely impacted twin. Rachel has profound microcephaly and cerebral palsy as well. She is also spastic quadriplegic and had a dual hip resectioning performed in November of 2006, two weeks before I gave birth to her little brother. Rachel was also diagnosed in December of 2008 with Osteopinnia and needs to be measured regularly to detect possible fractures. Rachel is globally delayed and tests at about a 3 month level. She is also profoundly deaf to 120 db and has vision impairment, but has very cute glasses that she loves to wear. She is G-tube fed and had nissen fundoplication performed in the spring of 2008 but recently broke through it and continues vomitting. Rachel has fortunately fought off pneumonias in the past but has incredible difficulty in breathing. She has seizure disorder which has been well controlled and monitored over the years. Like her sister, Rachel has also developed quite a following in our community and has many little friends who love to visit, "pet" her and give her kisses.
Given Rachel's severe medical condition over the years, we made the difficult decision to place her outside of our home back in 2005. She had been in a state of medical decline for many months and we were feeling immense pressure to do our best for her and find solutions to these problems. Her specialists became uncooperative and frustrated by her symptoms and her pediatrician asked for us to remove him from her case. A wonderful teacher at the girls' special education preschool recommended to me that we place Rachel out of our home but retain all parental rights. We met with a couple of residential homes in our area that were in normal neighborhoods, run by families and nursing staff. The second one that we visited had a huge impact on me and made me feel the lightest and calmest that I had felt in months. The owner and I became immediate friends and Rachel began living there full-time in December of 2005. She shares a downstairs bedroom with another disabled little girl and they enjoy a full view of their lush, green backyard and occassionally get licked by the owner's golden retrievers. It has been the best and most wonderful arrangement for our family and I feel so blessed by having met this family and allowing them into our lives and into Rachel's life. They are so patient and gentle with her and are extremely supportive to us and our other children.
I have been so challenged but so blessed to have these sweet precious girls in my life. They have taught me so much and have humbled me far more than I ever could have imagined. While I initially wanted to eradicate the world of CMV and cause a firestorm to elicit change and raise awareness, at one point I had to be at peace with the diagnosis and my limited power in controlling what happened and what will happen from here. But I love every single day and thank God for every moment that I have with them.
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