ONE MOTHER'S STORY

updates: last modified 18 April 2003

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One Mother’s Story of Her Daughter with CRS

Presented at the National Conference on Deaf-Blindness, Washington, DC, 1997

 

I’m Marilyn Fredrick, I live in Iowa and I want to tell you about my daughter, Brenda. Brenda was born in 1959, a victim of congenital rubella syndrome. I contracted German measles about 2 weeks into my pregnancy. I did not know I was pregnant at the time. I was working as an office nurse for a physician who also happened to be my personal doctor. He gave me a huge dose of immuno-globulin when I suspected that I could be pregnant. I attribute that intervention to the fact that my daughter was born with such minor problems. She had congenital cataracts, a mild hearing loss, very mild cerebral palsy and an atral-septal defect in her heart that closed on its own about age 4.

 

Overall, her development was quite slow. She didn’t walk and talk until she was 3 and 4 years old. In that respect, the congenital rubella showed its effects. She gained weight slowly. When she was 4-yrs. old, she developed glaucoma in her right eye which led to its removal. Her left eye still had some vision, but she was classified as “legally blind.”  Because of her slow development, the physicians and various developmental specialists felt that she was not going to develop normally and that she was probably mentally retarded. They wanted us to put her in an institution. I didn’t accept that because I saw things in my daughter that they did not see. I felt that she had much more potential than they were giving her credit for. The thought of taking my only daughter, whom my husband and I had waited three years to conceive, and putting her in an institution was repugnant to me. She was so loved and so wanted! We took her home from the hospital and decided that she would just be the best that she could be.

 

Despite her slow beginning, she started school at age five in the public school system. At the end of that first year, the teachers, administrators, my husband and I decided that she would benefit more by being in a school for the blind. We agreed that the public school system at that time could not provide her with what she needed. So at age 6, she was enrolled in the Iowa Braille and Sight Saving School. At the end of junior high, the administration in our public school system changed. They informed us - by letter during summer vacation - that our daughter was being mainstreamed back into the public school system. Although their method of communicating this decision to us was not the best, we did not contest the decision. We felt Brenda’s development was so pronounced and her education was progressing so rapidly  that she could probably tolerate the public school system. That had always been our goal  - to have her back where she could live at home and be a part of the community again. With a lot of cooperation from our local school district, she entered our local public school. The first six months were traumatic because the school was not prepared for her and they had to adapt - but adapt they did and she did well! She graduated in the top 20% of her class of 120 students and went on to earn a BA in Speech Communications at a college in MN. She then went on to graduate school at the University of Missouri in Columbia.

 

In her second year of graduate school, everything started to fall apart. Brenda began to deteriorate both physically and mentally. She was admitted to a hospital for about three months. During this time, she was diagnosed with Hashimoto’s thyroiditis, mitral valve prolapse, glaucoma in her remaining eye, cystic disease of the ovaries, hypothyroidism, constant urinary tract infections, spastic colon and additional hearing loss. But because she also displayed very bizarre behaviors, the doctors insisted that all of her problems were psychiatrically based.  After three months in the psychiatric hospital, we received a call, which basically indicated that they felt they had done all they could for her. They admitted that they were at a loss as to what to do next. “Please come and get her.”  So, Brenda dropped out of graduate school and Don and I brought her home.  I took her back to the the hospitals and clinics where she had been a patient all her life. They referred us to many rehab facilities and did extensive testing on her. The theory was that perhaps she might have a progressive rubella panencephalitis (PRP), a degenerative process occurring in the brains of some people who have had rubella or congenital rubella syndrome. Testing indicated that her spinal fluid was normal and other indicators of PRP, such as the elevated titers, were not present.

 

After about four years of being in and out of the hospitals, in one rehab program after another, her behaviors were still very, very bizarre.  We would sometimes get calls from staff at the rehabilitation center in the middle of the night saying, “Your daughter is gone and we don’t know where she is.” The sheriff’s department got to know us very well because I enlisted their help whenever she would disappear. At that point, my husband and I decided to seek legal guardianship of her. Despite all of her problems, we had a really tough time convincing them that she needed a guardian! We persisted and eventually did get guardianship of her.

 

Brenda’s condition continued to deteriorate. Soon, the doctors at our hospital recommended placement in a nursing home because rehab was just not working. In the interest of her personal safety and security, she was placed in our local nursing home. By then, she was not able to walk or talk. Once again, they were labeling this all “psychiatric” because they could not find a medical basis for any of this. She stayed in the nursing home about 9 months and failed very rapidly. The staff felt that death was imminent and because we did not have a diagnosis except “dementia of unknown causes,” they said they would not keep her any longer. Our local family physician talked with the University Hospitals and told them what was going on. The doctor he spoke to indicated that he felt the nursing home was an appropriate placement and that there was nothing more that they could do for her. After several other calls, our physician was finally able to get her admitted to Lutheran Hospital in LaCrosse, WI. Don and I drove her right to the emergency room.. I knew we had finally found a winner when we got to the hospital and found the Emergency Room physician waiting for us at the door. As you might know, that’s just unheard of.  His first words to us were “Before she leaves this facility, you will know what’s wrong with your daughter.”  My husband and I breathed a sigh of relief.

 

At the same time, I had started doing my own research. I had contacted the Helen Keller National Center and Nancy O’Donnell, Barbara Fedun at St. Luke’s- Roosevelt Hospital in New York City, and Dr. Jerry Wolinsky in Houston. He was very intrigued with my daughter and on numerous occasions called me about her, offered his expertise and contacted Brenda’s physician at LaCrosse. Between the two of them, they pretty much determined that my daughter definitely had late onset manifestations of congenital rubella syndrome. They don’t know the exact cause or extent - just that she was deteriorating. They began to treat her for a dementia-type illness in the brain and started giving her different medications to see if they could halt its progression or give her some relief from the symptoms. They put her on the drug Klonapin, which had never been prescribed for her before. For some reason, it started to turn her around. They began to see a little bit of improvement. She started to recognize Don and me again. At that point she was still not walking or talking, but she was making more eye contact with us. They increased the Klonapin dosage. After about 6 months of therapy, they had her talking again! It took longer to re-teach her to walk.  In all, she was in LaCrosse for about 3 years. A great portion of that time was spent in the hospital, the rest in a rehabilitation center. One interesting development was that she was diagnosed with a condition know as alexia, which is the inability to read, but she didn’t develop agraphia. Brenda could not read but she could write fluently!

 

Finally the doctors at LaCrosse decided that Brenda had reached the level where she could probably do very well in a residential care facility (RCF). We brought her back to Iowa and moved her into a residential care facility near our home. That’s where she resides today.

 

One of the doctors who met and tested Brenda is supposed to write a professional paper about her. We are hoping that this information will make it into the medical journals because there’s such a void out there on this topic. I’m hoping that maybe our experiences will help some of the other families. Late manifestations are out there. I have no doubt about that. They are there. Not every (child with) CRS will develop these. Our daughter’s case was probably a very rare case. But we don’t know.

 

For those of you who may have to deal with this in the future, my suggestion is to be persistent. Be very assertive with medical personnel. That was my field - and I hate to say it because medicine was part of my life - but I learned very quickly that I had to be very, very assertive for my daughter because they did not understand. Don’t let anyone tell you what you should or shouldn’t do with your child. Trust your heart. I learned that the hard way too. My daughter has been ill for 13 years and it took us 6 years to come up with a diagnosis. During that time it was very difficult on our marriage. My husband is the type of guy who listens with the heart. I listened to the medical people. There was a big conflict there (smile) because I thought the doctors knew and they were giving us instructions on how to handle her and I was following their instructions. My husband was following his heart. It took us several years to...what should I say...to get our act together, I guess. But we’ve been married 41 years now and we’re still together ! We’ve grown a lot in these last 13 years. I thank God for him because he taught me to listen with my heart.

 

Do your own research if this happens in your family. The information is out there and now, especially with the Internet, there’s scads more available to you now than it was to me when I needed it. Also, take care of yourself because without that, stress will take its toll.

 

My daughter is in a residential care facility. She can now walk with the aid of a walker. She can talk well enough to communicate her needs to us.  But she cannot totally care for herself.  She suffers from severe depression and is under medication for that. She has gained over 100 lbs. She was a little 5' 2" under 100 lbs. petite little gal and she is now over 200 lbs. despite a 1000 calorie diet and rigid exercise program. She still is retaining all of this weight. She is on multiple medications for the various ailments she has and suffers from bouts of bowel and bladder loss of control.

In spite of all of this, she writes beautiful poetry! Amazing!

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