Living with Congenital Rubella Syndrome: “You get called stupid or slow. You aren’t. I’m not.”

This is the first in a two part series on Kimberly Cowley, a 50+year survivor of Congenital Rubella Syndrome (CRS). Kim reached out to the Measles & Rubella Initiative to tell her story. A fierce advocate for vaccination, Kim wants others to realize the burden that CRS, an easily vaccine-preventable disease, places on those infected and their families. If I can save just one life, by telling, teaching and pushing for vaccination, she said, then I know it’s all been worth it.

On her second day of life, Kimberly Cowley had congestive heart failure. Considering the vast array of health issues she had been born with—hearing and vision loss, a rare condition known as Tetralogy of Fallot caused by a combination of four heart defects, any one which is a killer—expectations of survival were low. Kimberly had Congenital Rubella Syndrome (CRS), a condition that happens when a pregnant mother contracts rubella during pregnancy.

Against all odds, Kimberly survived, celebrating her 50th birthday last Fall, but the road has been long and often painful.

Born in Hamilton, Canada in 1964, Kimberly spent the first two months of her life in the hospital. Her parents were young and shortly after marriage, her mother became sick. She thought it might be a bout of flu. And then once she learned she was pregnant, she thought maybe that was why she felt unwell. It was neither.

Her mother later learned that it had been rubella; having come into contact with an infected relative in her first trimester. In 1964, the rubella vaccine was still five years away from being available. When Kimberly was diagnosed with congestive heart failure that second day in the hospital, her parents realized the problems were much bigger than they had thought.

Those first two months were a whirlwind of tests: tests on oxygen levels, tests to determine the extent of damage to her heart, tests for her eyes and ears to see how profound the damage was. They found that the nerve damage on her right side was complete and catastrophic, meaning there was no way to repair her right eye or ear. All Kimberly’s parents were told was that they would have to wait until later in life to see how this translated in reality.

Like most children, Kimberly started school at age 5. But in all other ways, she was profoundly different from the other kids in her class. Physically, she was the size of a small three year-old, and school was an immense challenge. Given no special tools, Kimberly was expected learn at the same rate as her classmates while missing most of two of her senses.

“Learning is difficult because so much of learning is a visual and audio skill,” Kimberly said. “It’s difficult when you miss half or more of the cues. You get called stupid or slow. You aren’t. I’m not. I just didn’t hear or see what I was being taught.”

Seeing was difficult even while sitting at the front of classrooms and she often missed spoken instructions if the teacher turned towards the chalkboard, or some other noise carried over speech, confusing or muffling what she heard. Often at the wrong end of frustrated and angry teachers who truly expected her to be like everyone else, Kimberly learned to bluff her way through school and to pick up what she needed to know by reading about it later.

School was exhausting. After eight hours of concentrating to hear, see and keep up, she craved silence and to be left alone, meaning ‘after school friends’ were few and far between. Often lonely, she grew up being bullied and picked on for her differences. The teasing was relentless, daily, and something that never became easier.

Kimberly’s parents were at a loss, not knowing what to do or how to cope. At a young age, she started detaching herself from her family, not knowing what else to do or how to cope with a world that didn’t comprehend her needs. A world that unfortunately included her own parents. “I needed advocates and they just weren’t,” she said. “My mother had been a bully at school herself and continued that behavior with me. She was unable to relate to my disability. There was name calling (“freak, chicken chest, weird”) and more. It was hard to get close to my father or brothers too because they didn’t try to get close to me.”

Unfortunately, Kimberly’s struggles only worsened, facing open heart surgery at age 11.

For more on Kim’s struggles with CRS, and how living 50+years with CRS has turned her into a staunch advocate for vaccinations, click here for the second part of the series.

27 responses to “Living with Congenital Rubella Syndrome: “You get called stupid or slow. You aren’t. I’m not.””

  1. Linda Vassie says:

    I, too, have CRS. I had a heart attack at age 11, none surgeries to correct defects, & I had an awful childhood of bullying from other children & mfrom my father. I’ve always imagined doing something fantastic, (finding a vaccine to a disease), but I have no finances to speak of to accomplish that. I would like to see funding for people like us who are just existing in this “normal” world!

    • Kimberly says:

      Hi Linda. Kimberly here. It’s my story in the above. Changing things doesn’t have to be as profound as finding a cure for something. It can be as simple as lobbying on a local or state level for services for those with CRS. Educating by telling and driving awareness. Be a vaccine advocate in your community and tell why. Sharing here was the first step. Thanks for that!

  2. Linda says:

    I have a friend who was born with CRS. She is legally blind and deaf. She is able to work and is a college graduate. Is the life expectancy of a person born with CRS shorter or with good medical care can they live a long life. I cannot find any information online. or at least not good information.

  3. Barbara Meyer says:

    my sister and roommate turned 60 on Christmas Eve. She was lucky; one theory they told her was that although there was evidence of brain damage she would have been a genius and now she has above average i.q. Born deaf in one ear, blind in the opposite eye, and spent the first 6 months of her life in hospital. She has a degree and has always worked but she seems to be aging rapidly the last few years. I am curious about the life expectancy thing too.

  4. Andrea Arnett says:

    I was born with CRS in 1958 with a cataract, retinal damage to both eyes rendering one eye with very limited vision and the good eye with 60% vision. I had PDA surgery at 4 months of age but have had no real heart problems since. I attended a regular school and did well but in my 4th year of high school at 15 I developed Meniere’s Disease which causes attacks of vertigo, dizziness and hearing loss. At 60 I now have no hearing left in my right ear and my left ear has mild hearing loss. I have always had nystagmus with my vision and have tinnitus and hyperacusis with my hearing loss. I am generally quite healthy although 2 years ago I was put on medication for high blood pressure and high cholesterol. Both are well controlled. I married and had 2 children and also have worked in libraries. I am co ordinator for a Meniere’s support group in Melbourne Australia and my mother was a founder of a support group for parents of children who are deafblind/Rubella back in around 1960. This organization is now called Able Australia although I have had very little to do with them in my adult life. They do a great job helping adults with CRS who are more severely affected than I am. I hope you have found my story interesting.

  5. Theresa says:

    Well, I knew that being exposed in utero could cause a myriad of medical issues but never realized that I might also be experiencing some myself. My mother had rubella during our second trimester. I was born with one eye having impaired vision and one ear having impaired hearing. I had a heart murmur that took decades to be diagnosed as valve regurgitation although very mild. Now as an adult (58) my eyesight in both eyes have diminished significantly and my hearing in both ears are also much worse. My left being close to deaf. I developed cataracts 10 years ago and I also have macular degeneration. I was diagnosed with Meniere’s disease about 20 years ago. My entire adult life had been plagued my migraines. My brain scans showed odd bright spots that they couldn’t say why they were there. Just in the last month I had another MRI and found out that I’ve had a small stroke and never knew. We were actually looking for tumors in my inner ear because my hearing took a very strong downturn over the last year. No tumors but a stroke. I don’t know if all these problems are related to CRS but I would like to know if other folks have had similar diagnosis. I’ve lived most of my life having people doubt me when I’ve tried to explain what was going on. Or doctors would just say, we don’t know why this is happening. I’m especially curious to see if have strokes seems to be related. I was very shocked to find out that I did have a stroke. Still trying to process that. Thanks for listening. I don’t have nearly the medical issues that most of you have. Probably because i was exposed in the second trimester. Thank you for sharing your stories and helping me feel that there really may be a reason all this has happened to me.

  6. Arup Kumar Roy says:

    My baby born at 36 weeks is suffering from CRS. She is 7 months old and weighs only 4 kg. She had both cataract and glaucoma which were operated when she was 1.5 months. Now she has pulmonary artery hypertension for 5mm large PDA and needs urgent surgery. May be she also has sensoneural deafness.

    Need all of your guidance..

  7. Dixie Depp says:

    Born in 1946, now I am 72 and have always wondered why I had so many problems ! I knew my Mom had ruebella with me, my eyes were fine, and at about 6 months, they discovered the hearing loss. No heart problem, thank goodness. During my early years, I developed a goiter which affected my thyroid gland. I was very strong and started losing my strength in middle school. I am now weak and tire easily, had 2 cataracts surgeries and Breast cancer. I had always wondered why I had difficulty getting pregnant and staying pregnant. I have three healthy babies after 6 pregnancies. Because of hearing loss, I had trouble making friends and did poorly in normal schools. Was held back twice, but managed to do two years of college. I married a wonderful man and we are celebrating 50 years next week! I am very grateful ginding this site! My lifetime of questions has been answered.❤️

  8. Jeanne says:

    Wow, I knew there were thousands of other “Rubella babies” out there, glad to find some. I’m 55 and
    was born with almost no vision in one eye
    under a cataract and almost no hearing
    in one ear. Multiple health concerns now
    including diabetes, hypothyroid, osteopenia, and
    mitral valve regurgitation. Happily working as
    a nurse, married with two adult children.
    Just curious to connect with similar health-
    history people.

  9. Maribel Lopez says:

    My name is maribel. Im 33 and was boen with CRS. I just found out 4 years ago because my negligent mother denied to tell me my true diagnosis. Im angry, im hurt, im depressed and can’t help but wonder why me? All my life I knew I was different. I learned different than others. I had 3 seizures at 17 and after that no more. I graduated high school. Went to college and now am a medical administrator. I am deaf in my left ear, have glaucoma eye pressure in my right eye. I had cataract surgery at 3months old. Was bullied in school. I have a musical ability. My pregnancies have been difficult but I have a healthy beautiful 7year old. If my mother would have told me sooner about my condition my life would be different. How do I cope? A Dr told me im a medical Marvel because I function better than people with my condition. Now I’m trying to find research for people with my eyesight like stem cells to help us. I’m lost and afraid and don’t know how to cope.

  10. Daisy says:

    I am 11 weeks pregnant and discovered
    I had acquire rubella recently and suspecting during
    My 3rd week my doctor is recommending
    Not to continue my pregnancy because
    Of the complications that my baby can have
    For life. Being born with rubella syndrome
    What would you advise me to do?
    It is really a tough and hard decision to

  11. A Grateful Wife says:

    Dear Daisy,

    In 1964, a woman in Columbus Indiana contracted Rubella while pregnant. She had little to no symptoms…a cold or minor flu. She delivered a son August 6 1965. After a short while, her family doctor determined the boy had a heart defect. Through testing, it was determined he had Tetrology of Fallot. From months old to age 9, he was apt to be sick and required additional care and testing. But, he was tough, courageous and played as well as other children and never felt fatigued. At the age of 9, he underwent open heart surgery to repair his heart at Methodist Hospital in Indianapolis with child care by Riley Hospital. He was surrounded by the best doctors, surgeons and nurses. His surgery was successful. He grew. He turned from boy to teenager. He began lifting weights and took up running. He developed an inquisitive mind, respect for nature, and a good sense of humor. In his senior year of high school in 1982, he met a sophomore. The day they met, they each felt they had met their soul’s mate…and they have been inseperable ever since.

    I am that woman and my wonderful husband is that man. In August, he will turn 55. I cannot imagine my life without him. He is my best friend, my true love.

    Daisy, I do not know the extent of your unborn baby’s condition. I cannot imagine the struggle, pain and anguish you are experiencing. However, I can say with 100 percent conviction that I don’t believe I would exist without my husband. His life has made my life, and I know he believes the same about me.

    We each influence each other in this world whether we ever meet or not. Our life matters and it has incredible worth. Please think on these things. Please pray and ask God for guidance. Please know that this is the largest decision you will ever make. While my mother in law was not aware that her son would have Rubella Syndrome and therefore did not have knowledge of the condition as you do now, my husband and I have both are eternally grateful that he was not aborted.

  12. Deb E says:

    HOPE With No Regrets!
    Dear Daisy, this evening I saw your post and realize you are giving me a gift and this is my opportunity to tell a truth that I have wanted to explain for 30 years. I was born in 1957 and became pregnant for the first time in 1990. At which time I developed rubella between the 9th and 10th week of my pregnancy. Yes, the doctors recommended exactly what they did to you and expressed the 90% chance of horrific outcomes. We saw three doctors and each told us the same story. The problem is 30 years later I continually ask myself why didn’t we wait for the 10% chance that something good might happen. I even asked why not just wait for a miscarriage and let nature take its course – each doctor had a horrible story to give grim details why that was a bad choice. Therefore — We reacted in fear, instead of leaning into faith. What’s interesting about our story, that decision didn’t make life easier for us it filled our life with regret. We never got pregnant again, but thankfully had adopted a daughter 3 years earlier. She has autism and numerous health problems – each day we are equally thankful for her. Daisy, no matter your decision, someone in Oklahoma will be thinking of you and lifting you up. I’m so thankful to be able to give you this perspective. Doctors read journals, quote statistics but God shows up to walk with us no matter the path. Yes, if I had one person to talk to me like this it might have made me think “hope” instead of “NO”. Sincerely praying for you!

  13. Dana Betz says:

    My mother was babysitting for a friend whose children (unbeknownst to my mom), had rubella. The friend told my mom after sher picked up her children. My mom was in her first trimester of pregnancy, and was worried thruout the pregnancy.The friend was unaware that my mom was pregnant. I was born (1959) 7 pounds 7 ounces and healthy-except for blindness in my left eye. So glad to be alive and not aborted. I have 4 grown children and 7, soon to be 8 grandchildren. All healthy. Rhubella syndrome is not passed down to further generations. My children are a dr of biochemistry, a botanist, a dental assistant, and my youngest is an RN currently treating coronavirus patients in Seattle. My oldest-the biochemist-saved the life of a stranger who attempted to jump off the narrows bridge in Tacoma. When I was born, the dr told my worried mom that God has some special purposes in mind for people with birth defects. My purpose has been to raise my children, and to nurture and teach other children and to encourage parents. Daisy, you will never regret sparing your precious baby’s life. ❤️ Oh, I did need a minor surgery to correct a sinus issue, at abou age 7.

  14. Linda Phillips says:

    I was born in 1941 and my mother knew she had rubella during the first trimester. I was born with a cataract in my right eye and the same eye was crossed. I was allergic to milk. At 6 months I had a mastoidectomy and at age 1 had cataract surgery. I have peripheral vision in that eye but it is considered legally blind. At age 6 I started school (first grade) and had poor speech and poor coordination. The school wanted to put me in special education but my mother refused to let them do it. At age 10 a speech therapist taught me to read lips because they thought it would help my speech. I went through school with good grades and graduated at age 18 with a college scholarship. My stepmother thought I was a rebellious teen-ager when not responding to her. One day she realized I wasn’t hearing her. A doctor told my parents and me that I was hearing impaired and needed hearing aids. No one had realized I wasn’t hearing properly! I also have 4 heart murmurs but no other heart problems. I do have a seizure disorder that’s triggered by certain things and is controlled with medication. I was an adult before being given medicine even though I had seizures as a child. I have a few other minor things too. But all of this has not kept me from having a normal life and I obtained both a Ba.helor’s Degree and a Master’s Degree and worked with disabled adults for 23 years. I was married and had 2 children (plus stepchildren) and have grandchildren as well. I volunteer at a senior center, teaching people how to use computers and how to write. I haven’t met other people with CRS and am glad to hear other stories.

  15. Cheryl says:

    Wow!!! So awesome to come a cross this thread!!! My mom had rubella first trimester. I was born in 1963. Blind in one eye and partially deaf in one ear ( which no one really said anything about). Had open heart surgery at 6 weeks. Drs told my patented I probably would not live passed the age of three but here I am at 56. Bullied too at school. Never knew anyone else going through the same stuff. Did well in school, went to college, married and now my daughter just graduated from college. Always wanted mire children but seems from this thread some have issues with fertility. Always wondered if there was a connection. Thank you all for making me feel connected.

  16. Robyn says:

    I had my baby in 1979 .I was babysitting & the mother didn’t tell me her child had G.M. My beautiful little girl was born with inoperable heart condition. catarats in both eyes, & other conditions .She sadly passed away at 3 months after suffering the entire time from not being able to breathe or eat .My heart will always be broken from losing here from something that didn’t have to happen .💔

  17. Ashwani Kumar says:

    Sir, I am ill fated father (62) of unwanted rubella affected
    son now aged 33. Sir, I am getting old and unable to help in the future. Is there any organization in the world to help such persons born with rubella syndrome.

  18. Tamara Scott says:

    I am a 50 yr old female born with CRS
    I was born with only my left eye. Right eye was only a cyst that was removed. I miscarried my first child. I had 3 strokes in my brain at the age of 37. I have had multiple problems with my good eye and am concerned now with high pressure and pain behind it along with numbing sensations. I have had a renal infarction also in my right kidney and was diagnose of having Factor Five blood clotting disorder. I have constant panic attacks and several episodes of chondrocondritis (sternum cartilage inflammation) I am worried that I have passes this on tho my children as my daughter has been diagnosed BIPOLAR1/schizophrenia at the age of 19 and has many health issues along with it. My son has continuing anxiety/and myopericarditis which can be cause by rubella antigens
    I have osteoarthritis in back neck and hips along with bone spurs Recently been diagnosed with Renauds phenomenon
    What next? No one is concerned. Even my EKG READS BORDERLINE / high mg arterial leads
    Need a support group. If this doesn’t kill me the stress of it will lol

  19. Evette Mass says:

    I belong to a Facebook group with others. Who have CRS.
    I don’t want to post the whole link on here don’t want a bunch of weirdos finding it. But if your interested let me know and I’ll send it you.

  20. Tamara says:

    Yes thank you so much. I have now tested positive for factor 8 and am on eliquis plus have had another stroke [email protected]

  21. Kevin Shawn Dotson says:

    I was born in 1963 blind in my left eye. I have memories of numerous doctors examining my eye before I reached 4yo and then they ended. I never understood why, until I was 4 to 5yo and noticed people treated me different. More often than not, in a bad way. That’s when learned other people don’t see the world as I do and that my eyes didn’t look the same. My left eye being underdeveloped and had a cataract. The first indication being my
    16yo twin uncles who made fun of me and encouraged my encouraged bother to beat me. Marking the start of my childhood PTSD and depression. Little did I know I would spend the rest of my life being judged for being blind in one eye.
    Later in my childhood I would learn my affliction was due to mom contracting measles while I was in her womb.
    K through 10, I went to 12 different schools. At each school I became a target for hate, verbal and physical abuse, not to mention the sexual abuse.
    Before I started school I had to show proof of MMR vaccine along with small pox…
    I hate anti vaxers! As I got older my animosity towards my mother grew stronger. Why didn’t she get vaccinated? Why did she subject me to this life of torture?
    She passed away in 2017. Thanks to this website and other web searches I now know there was no MMR vaccine available in 1963. I am sorry mom, I love and miss you!

    It’s a pandemic, get vaccinated people!

  22. Marilyn S. Born HOLMES says:

    I was born a rubella baby in 1943.
    I had a cleft palates, some hearing loss, and my parents were told that I would have neurological problems and would die before the age of forty. I have since been told by an older cousin that she was told that her new cousin,,,me..
    Would never walk or speak and would live her life confined to a wheelchair.
    When docs told my parents of my prognosis they took me hime, got me a banana shaped bottle with a teat at each end for easier feeding, and nicknamed me Wildy. Yes, why wouldn’t I be Wild? I could not suck at the breast to get sustenance and I was big, and HUNGRY.
    My parents looked at each other. “She looks alright to me,”
    My dad apparently said. My mum agreed, “Let’s see what happens next.”
    I got teased a lot at school. “What language are you speaking? Is it double Dutch?” Anger for me nowhere. So I went into my shell and became extremely shy.
    Enough anyway.
    I had successful cleft palate surgery, wear hearing aids, glasses and had mastoid surgery, and in 1995 major neurological surgery because I was developing an unsteady gait and without surgery would have lost my mobility. My speech has improved over the years as my shyness ebbed. I survived breast cancer and have had the usual cataract surgery which often goes with aging.
    The last time I had a back of the head MRI I was told
    “The way everything looks inside your head you should not
    Be walking talking or speaking.” Well, here I am, still doing all of the above, and have survived a burst appendix and broken hip. Yes I do use a wheelie walker.
    I went to work almost straight from high school, married, had a son, and am now the grandmother of 6 grandchildren
    All of whom I just love to bits.
    Doctors predictions do not always prove correct.
    I am grateful that I am a much blessed Rubella survivor.

  23. Shawn Lemieux says:

    I an turning 50 this year and my mom had the German measles while she was pregnant with me, i was born with congenital cataracts and glaucoma. Oh i am also 4’8’. I have some medical issues. I recently got diagnosed with hearing loss. Is there a way to see if I have CRS.

  24. Ann.c says:

    I was born in 1950 and have CRS due to my mother contracting rubella during the first trimester. She did not know she had the disease at the time, as she had only a mild rash on her arms which she thought was diaper rash picked up from an older sibling who was still in diapers as a toddler. It seemed at the time of my birth I was a healthy, normal baby, but at 2 yrs of age, I was discovered to have severe/profound hearing loss, both ears. I was raised oral deaf, learning lipreading and speech therapy at a speech and hearing center near my family home. I don’t have congenital pulmonary problems, which would have presented at an early age. But I developed cataracts in both eyes in my early 40’s and the eye doctor who learned that I have deafness due to CRS attributed my adult cataracts to CRS. Has anyone else here with CRS have this occur at a later age and been told this?? I’ve done a lot of research on this late-onset CRS cataract phenomenon and I haven’t found anything. I’ve wondered if the cataracts were a result of an auto-immune response due to declining rubella antibodies and another rubella infection as an adult or something else.

    As a toddler I developed a sensory processing disorder, something that is common among some deaf people who did not acquire language (spoken or sign) by age 2 yrs. There are not many studies about it. Anyone here with CRS who has this also??

    Like others here, I was picked on and bullied all thru K-12 because I was the only deaf kid in the school. There were times I wished my mother had not been so adamant about no sign language and allowed me to have some deaf friends. My life then would have been a lot easier in the social context at an age when it was crucial to have some friends in your corner. I aced high school and college, have two college degrees, and ended up working in the entertainment industry, which I loved, ’til retirement. Have been married to a wonderful, patient man for 32 years.

    I have the double whammy of CRS and DES exposure. I was not able to have children due to the DES my mother took supposedly to prevent miscarriage. Ironic…

    Anti-rubella vaccines were not available ’til the 60’s, but doctors were already aware of the correlation between maternal rubella and infants born with a triad of audiological, ophthalmic, and pulmonary defects for many years prior. If only doctors had raised more concern over what they saw and knew then and called for studies to be initiated far earlier, there wouldn’t be so many of us having to deal with the hardships that came with CRS. The first vaccine was for smallpox in 1796, so it’s not like knowledge of vaccines was unheard of.

  25. Elaine Moffitt says:

    My sister was born in 1961 with CRS. My mother must have contracted it very early in her pregnancy because her disabilities were much more significant. She was born with cataracts, hearing loss, a heart defect and severe cogitive impairment. We lived on a farm in Wisconsin and a nurse would visit every month to offer support. She encouraged my parents to institutionalize her at age 5 as it would be better for our family. We visited her weekly and eventually she moved on to group homes. She learned some basic sign language but never spoke or moved beyond putting simple puzzles together. I was her guardian after my parents grew older ( I was also a Special Education teacher). My sister passed away in 2019 at 58, in the room that she shared with my mother in a nursing home at the end of her life. My older sister carried guilt her entire life after passing Rubella on to my mother. I wish there were more I could do to influence others to get vaccinated.

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