TORCH Syndrome

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Hello. I am new here, my name is Gwen. I have a 17 year old son named Josh. He was born in 1991. During my pregnancy with him I developed some sort of infection, which was never ruled out. At birth my son had a lot of medical problems, he was Jaundiced really bad, he had Hemolytic Anemia, he had Septo-Optic Dysplasia and Interstitial Pneumonia. He remained in the NICU for 3 weeks following his birth. He was diagnosed with TORCH Syndrome when he was a little over a year old. He was also found to be Moderatly Mentally Retarded. He had calcium deposits on his brain when he was born. He currently has an IQ of 43 and he also suffers from Bipolar 1 Disorder as well. Last year we had to instituonalize him for a period of three months until he could become stable on the medication. I have been reading that this disorder (TORCH) can cause Seizures, he never had any that we are aware of, however our oldest child, a daughter did have them. They began after her DPT shot and she was dx with Childhood Absence Epilepsy. At the age of 10 her seizures stopped and she has been seizure free since. My husband has a brother that died as a toddler with a lot of the same symptoms my son had however he was never dx as having TORCH. He also has a younger brother who is moderatly mentally retarded as well. Our oldest child, daughter got married in March. Her first baby was due Sept. 10th, 2008. She went into preterm labor and delivered a baby girl at 28wks gestation. The baby is still in the NICU and has been since birth. She will be coming home next week though. My daughters OB doc has told her that he thinks she has something "genetically wrong" with her and that is why she delivered her baby so early. My questions are as u can imagine, was it TORCH?? Will my granddaughter have this disease? I mean if my daughter is a carrier, it is an Autosomal Recessive Disorder. I also just recently found out through gentic testing that I am of Italian Descent, which makes it easier to get TORCH. I have yet to run across anyone since my son was dx that has TORCH. Would love to be able to chat with someone who does and see how it has affected your life.

Gwen

2 replies

TORCH is an acronym for 5 different kinds of infections that a pregnant woman can get that pass to her unborn baby and can cause fetal death or problems with the baby. It is not genetic.

If a doctor suspects that there may be something wrong with your grandbaby the baby should be worked up for infections and genetic problems while in the NICU. If both you and your daughter have had a baby with TORCH then the doctors may want to run tests on several members of your family. A children's hospital where my children were treated for a genetic disorder had a genetics department that would do this kind of testing along with counseling. The sooner your grandbaby gets the correct diagnosis the better her longterm outcome may be.

Since your grandbaby was born so early and may have genetic or other difficulties it is extra important that she be breastfed for at least a year, even better 2-3 years or longer. Breastfeeding can add 10 or more IQ points, protects the GI system, protects the baby from infections including necrotizing enterocolitis, protects the baby from SIDS, promotes speech development, and offers other advantages.

What most people don't realize is that doctors and nurses get very little education about breastfeeding and may not know how imortant it is. If you would like to read more there are some excellent studies that have been done by Boston Medical Center.

If she is not breastfeeding now, it is possible to bring her milk back in a process known as relactation. If she can't or won't breastfeed your grandbaby may be able to get milk from a milk bank with a doctor's order. It is VERY expensive, usually $5 an ounce. If your daughter is unable to pay some banks will charge less.

I beg to differ with you, TORCH is Genetic. Because we took my son to a Genetecist at St. Louis Childrens Hospital and he told us we had a 50% chance of having another baby with this disease. If it were not Genetic then why would he have told me that. BTW...Im lillysnana from above, I forgot my log on info so I had to create a new account. Anyhoo, the Geneticist tested our Chromosomes along with our sons and said that it mainly ran in the boys, and one of our other sons could be affected with it more so than a daughter. What I was wondering if TORCH and Pseudo Torch are the same or diff diseases?

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