Desperately Seeking...Rubella Babies
Sunday May 28, 2006
Skylan writes on the forum:
My mother was infected with Rubella while pregnant with me.I have several birth defects.Some hearing loss,blind in one eye and heart issues. I am trying to find others that were Rubella babies
My mother was infected with Rubella while pregnant with me.I have several birth defects.Some hearing loss,blind in one eye and heart issues. I am trying to find others that were Rubella babies
Related: Helen Keller
Comments
HEllo,
I, too, contracted Rubella during my first trimester of pregnancy. That was 33 years ago.
My daughter was born weighing 3 lbs 14 oz. and was only 16″ long.
She had to undergo heart surgery at 2 weeks old. We learned of her deafness at approx. 8 months old. She also had vision problems.
Her growth rate was extremely slow and she is now only 4′ 10″.
Let me know if you have any further questions. I would love to chat with you.
Smiles, Cathy
i was a forster to two children that had rebella i don’t know if i can answer any qa for ya or not franmcob
I have a friend in the same situation. She is a twin, her sister is passed away from a car accident. She has hearing loss and learning disibilities.
I am a baby of a mother that had rubella and that’s 39 yrs ago when My mom had it.
I can answer a lot of questions for you.. I was in a study with children of rubella and I can give you some names and contact for medical view on the topic.
Yes, blindness, hearing loss, heart disease are are connected to rubella and plus more-
I have a blind spot in my left eye that can’t be corrected, I have a hearing loss- profoundly- severe hearing loss that can be corrected with cochlear implants- I haven’t gotten it at this time, My heart is in good condition.
A new development for people like me was reported that we also have pigmentation.. it’s a skin oondition where “white blotch of patches” show on your skin.. I have that but that runs in my family so it may not be directly due to rubella.
catherine
I was born nearly totally deaf in my left ear, some deafness in my right ear, and with poor vision in my left eye. My parents weren’t sure if it was because my mother had Rubella when she was pregnant with me or due to a high fever as a small baby (107 F). Otherwise I was OK until about 7 years ago when I sustained a further hearing loss in my right ear so that it is now nearly 90% also. This caused me more problems as it sort of makes me late deafened in essence. My partner’s mother was very hard of hearing so he’s always been patient with my hearing problems and has no problem speaking loud or explaining to me when I don’t understand other people fairly frequently. I took a year of Sign Language in our local community college and enjoyed it but I don’t have anyone to use it with so I’ve lost what little I had.
I’ve always considered myself lucky in that I had no other birth defects, the hearing loss being the major one. I mostly went to the Los Angeles City Schools and they were good with me, giving me lip reading classes in elementary schools and making sure that my teachers seated me to the front of the class in junior high and high school.
So I am probably another rubella baby, since that’s the most likely cause of my deafness. But I had less problems as a result and I was very grateful when I got older and understood what might have happened. I’m sorry that you had more birth defects and problems. I will be happy to communicate with you if you think my experience has any relevance to you or can help you.
Michael Ford
samudra@concentric.net
Hi
I’m from the UK and my mother had rubella when she was pregnant with me. They found out I was deaf when I was 3 months old. My right ear is totally deaf and my left ear at the time was severely deaf. I lost more hearing in my left ear in 2004 and had awful tinnitus with it as well and thus became profoundly deaf. I am now wearing a cochlear implant which I’ve had implanted in late 2005 and am doing well and hardly get any tinnitus at all now – only at night time before I go to sleep when I take the cochlear implant off. Rubella only affected my ears and nothing else so I’m very lucky indeed as I’ve been told I have very good speech and people can’t believe I’m deaf! I’m currently being a volunteer to a cochlear implant organisation and to my implant centre where they’ve helped me a great deal.
Elaine
hi.. I am a ruebella baby.. my biological mother had that in the first trimester.. I have almost complete loss in my left ear .. about 40 % in my right ear.. I am extrememely short.. 4′10 3/4 I had atrial septical defect and pulmonary stenosis .. my hearing was detected at 3 years old. I had lung issues too that they felt cleared up and became normal around age 5. I went to a regular school speech classes and function quite normally now. I am even a mother of a 8 year old now. If you have any questions feel free. Thanks!
My mother had rubella during the first trimester with me. I was around 5 lbs when born. I have profound deafness in the R-ear and severe/profound in the L-ear. I have been told the primary auditory nerve is missing in the R-ear and dying in the L-ear. I learned to speech read from about age 3. My mother taught me! I also know some ASL. Feel free to contact me.
Connie
willoweyes@juno.com
I am deaf due to maternal rubella, too. Feel free to email me. I want to know is there any health problems we might face in the future.
My mother came in contact with rubella while 3 months pregnant with me. I’m 44 yrs old now. I’ve had many health issues, congenital cataracts, chronic broncitis and asthma, osteoarthritis of the middle spine, left knee and ankle, and a narrow urethra. But what brought me to this site is a digestive problem I’ve had for 9 months now. The doctors are stumped, so I’ve been searching for answers. My esphagus and small bowel are narrowing, so I live on baby food, prunes, and milk of magnesia. I’m trying to find out more information on Congenital Rubella Syndrome, this could be a breakthrough for me and anyone else that has or may have GI tract problems, as Crohn’s, IBS and IBD have been ruled out. Feel free to contact me, the more information we have, the better for all of us.
I had a 38 y/o niece who just died on the 12th of June from a major CVA (stroke). She apparently had 2 minor strokes we were not aware of prior to the major one. She developed high blood pressure and anxiety and depression probably about 2-3 years ago and had a seizure at work. At that time she was informed she had mild MS. She never had seizures before. This was apparently her first stroke. Her mother had measles during the 1st trimester. My niece weighed 5.3 pounds. She had small hands and feet and probably was around 5 ft. in height. She was not obese. She had bilateral profound deafness and this was supposedly the only defect, but looking at a powerpoint presentation on this website:[PDF]Microsoft PowerPoint – Munroe I truly believe she had congential rubella syndrome. She had temper tantrums but basically lived a normal life, obtained a high school education, got married, and had 2 daughters (ages 4 and 16). She started having personality changes (aggression) and this syndrome can cause this and several physical/mental health problems later on in life. Everyone of you should read this presentation and informed your physician so he/she can order necessary tests to prevent another tragedy. I am not trying to scare any of you. I am currently corresponding with my niece’s deaf friend whose mother also had measles. This friend had a mild stroke a few years ago and currently has diabetes. If any of you want to mail me, please do @ dbeausue@aol.com. God bless all of you and I hope this info. helps.
Hello,
I’m seeking more information on the ‘white skin patches’ (vitiligo) and CRS. I’ve heard there is a connection. Our daughter is a possible CSR baby and has vitiligo. Vitiligo does not run in our immediate family. Thank you!
Hi,
I’m a rubella baby born 1950. I’m just under 5′ (and I hate it:), have nerve deafness in both ears (mild in left, severe in right), a slight heart murmur. That’s all I know for now. I am reading up on current research and want to keep abreast of the issues and problems.
One of my biggest challenges is the difficulty in understanding people due to not being able to distinguish similar sounding consonants… if they have an accent (even if it’s a NY twang) my ability to under stand them drops! Working in offices is difficult. Most of my life, I’ve done more entry level jobs even though I have a Ph.D. I wonder what the rest of my life will be like
Hi everyone. I’m 52 and from Australia. My biological Mother had german measles. I have hearing loss in both ears (use hearing aids), blind left eye, glaucoma in both eyes, had a heart operation at 4 years old, have high blood pressure, diabetes needing insulin, thyroid problems, psoriasis (skin diesease) and arthritis which has meant three operations, depression and I’m very short 4′8″ only (about 146cm). I’m also overweight. I can understand why people want to get in contact with each other. CRS is a life long problem. I have had a reasonable life, I’m well educated and have a great partner. I’ve never been able to have a baby though. I am pleased I found this forum because I anow know that I’m not the only one with CRS. I wish everyone well.
I am also a rubella baby born to a teenaged mother in 1971 in B.C. with a profound deafness in the R-ear and severe deafness in the L-ear. Despite being a premmie, I was of average size at birth(7 lbs).
I did have surgery at 3 mos for a hole in the heart which has long since been 100% healed. Plus, I have always worn glasses.
I am now an oral speaking self employed single woman with an aid only in the L-ear and a mother of two boys who are both very healthy.
However, I am quite curious to know if congential rubella syndrome is hereditary!
I too was born with rubella. Vision problems, heart problems, hearing issues, diabeties, strokes, memory loss and a host of other problems. would love to talk to some other individuals in same boat. Please email me at lbmram@aol.com
I was born in 1941. I am blind in my right eye (born with a cataract…was removed) The optic nerve is not developed. I am totally deaf in my right ear…auditory nerve not develooped. I am under 5ft. I have a small head. Born with heart mummur. In the past several years I have stomach and intestinal problems. I am a diabetic. I have a balance problem due to the blind/deaf issue. I was always sickly as a child. I am so glad to see here that I am not alone.
I was born in London,england in 1966 during a big rubella outbreak. they did not find my hearing loss until I was in kindergarten, at which point they found my heart murmur as well. as I age I am having kidney failure issues, (stage 4 currently). I have a narrow urethra, and i suffer from immense joint and muscle pain. interesting that so many people have the same issues…my email is missblondi66@aim.com
I was born in 1964. My mother had the German Measles in the first trimester. I born with an congenital cataract in my right eye. Surgery was done at two years old. They cut my iris and pupil to get the cataract out. I have never had vision in my right eye. I have glaucoma. I have hearing loss in both ears and was born with a heart murmur. I have ringing in my ears all the time and it drives me crazy. I have a small head. I have been richly blessed to give birth to four typical children and one autistic.