Hello and welcome to the Fairfax Cryobank Family Forum!
The forum has a new look and the Fairfax Team is so excited to create the best experience for our users.
To Note:
Private Donor Groups and Private Sibling Connection Groups are now located under the category "Groups". Search the donor number in the search box and you should find exactly what you're looking for!
Questions about your forum access? Email forum@fairfaxcryobank.com
Follow these steps to join a private donor group:
1) Press "Join" at the right of the group
2) Once prompted to confirm your request please list this information so we can verify your information:
Name (under which the vial was purchased)
Email
Clinic Name
Donor number
Child Date of Birth
*If you are looking to start a private group for a PRS donor please email forum@fairfaxcryobank.com with the above information and that you are looking for a PRS group*
If you have any questions about the verification process please email forum@fairfaxcryobank.com
The forum has a new look and the Fairfax Team is so excited to create the best experience for our users.
To Note:
Private Donor Groups and Private Sibling Connection Groups are now located under the category "Groups". Search the donor number in the search box and you should find exactly what you're looking for!
Questions about your forum access? Email forum@fairfaxcryobank.com
Follow these steps to join a private donor group:
1) Press "Join" at the right of the group
2) Once prompted to confirm your request please list this information so we can verify your information:
Name (under which the vial was purchased)
Clinic Name
Donor number
Child Date of Birth
*If you are looking to start a private group for a PRS donor please email forum@fairfaxcryobank.com with the above information and that you are looking for a PRS group*
If you have any questions about the verification process please email forum@fairfaxcryobank.com
Medical Update- CLI Donor 2423
CLI Moderator
Senior Member
Medical Updates provided by CLI offer the added advantage that they are verified. We can confirm client information, review donor records and provide you accurate information right from the source. Please contact us if there is a medical update you would need to share. Donors can always update their medical history with us and we will share that information with you when it becomes available.
We have received information that Donor 2423 has two reported children by the same mother with sensorineural hearing loss.
These children appear to have isolated hearing loss without other medical issues. Genetic testing of the children did not identify mutations known to occur in inherited forms of hearing loss.
What is sensorineural hearing loss?
Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways. SNHL occurs in about 1/500 newborns. Most have this as an isolated condition with no other medical issues (nonsyndromic). About half (50%) are believed to have a genetic cause, most likely an autosomal recessive inheritance where both normal hearing parents are carriers of a genetic mutation. Not all genetic mutations known to cause sensorineural hearing loss have been identified.
What are the chances my child will have this type of hearing loss?
The mother does not have a family history of hearing loss, nor does the donor. Given the birth of 2 children with this condition, it is highly likely that the donor is a carrier. It is only when 2 copies of a hearing loss mutation, one from each parent, are passed to a child that hearing loss occurs. The chance that another mother would also carry one hearing loss mutation is about 3% (1/33). The risk of an affected child with donor 2423 if the mother is not tested would be about ½% to 1% (1/132). A mother can be tested to see if she carriers one of the known mutations, and if negative reduce her risk for an affected child further. If the mother is tested and found to be negative, the risk for an affected child with an autosomal recessive form of sensorineural nonsyndromic hearing loss becomes much smaller at about 1/1000.
Children from this donor have a 50% of being carriers of the same mutation assumed to be in the donor. Carriers of one mutation have normal hearing but are themselves at risk for having children with sensorineural hearing loss. Since the testing has not shown a specific genetic mutation, testing children by genetics at this point is not likely to be helpful. More importantly, children from this donor should have their hearing evaluated through their pediatrician’s office if not already done so. Many states require that all newborns be tested before they leave the hospital after birth. Future partners can have carrier testing and if negative reduce the risk of an affected child.
How is carrier testing done?
Mother’s can pursue carrier testing for nonsyndromic hearing loss by testing for mutations in the gene GLB2 (connexin 26) and GJB6 (connexin 30). This can be done though your doctor’s office. A mutation panel currently detects most but not all of the mutations. We recommend a consultation with a genetic counselor to review your testing options.
If you have stored semen samples on site with your doctor’s facility or at CLI you are entitled to a full refund for the cost paid per dose. For specimens stored at CLI, we will keep your account open until we hear from you. Conversely, if you wish to close your CLI storage account and seek a refund for your stored specimens, you must contact us. Please call 800-466-2796 and say you would like a refund on your 2423 vials stored at CLI. Only unused semen specimens will qualify for a refund. Any incurred shipping or storage costs are not refundable. If the specimens are stored at your doctor’s office and you do not wish to keep the specimens for future use and desire a refund, you must authorize destruction at your doctor’s facility and that facility must send us a letter indicating that they have complied with that request which must include your name, donor #, number of vials destroyed and each vials specimen date. Please ask them to use the address and/or fax number below. After receiving that letter from the offsite storage facility, we will process your refund. There is no time limit on your request for requesting a refund.
You may keep your specimens and use them in the future if you wish. You may also order more semen units from CLI if they are available, in order to have a full sibling. Any units of this donor sent from CLI will require that the informed consent be signed, notarized and returned prior to shipment. This includes units sent from storage accounts as well as new purchases for families seeking to have additional children by this donor. A copy of that informed consent is available by contacting CLI. A full refund is available for any units in storage unless a consent is signed, after which our standard return policy applies (50% for units that have not left CLI and no refund for units which have left CLI).
Donor profile information in your online order history for this donor will not be accessible. But we are happy to forward you electronic copies by email. Please contact us and we would be glad to assist you. Our goal is to have the donor information fully accessible in a few months so you can check for any other updates over time by viewing the donor's summary profile on the donor search.
CLI has a full time certified genetic counselor, Suzanne Seitz, MS, to answer your questions.
In addition our staff is available to help process refunds, exchanges and forward donor information. Please call us at 1-800-466-2796 for more information.
We have received information that Donor 2423 has two reported children by the same mother with sensorineural hearing loss.
These children appear to have isolated hearing loss without other medical issues. Genetic testing of the children did not identify mutations known to occur in inherited forms of hearing loss.
What is sensorineural hearing loss?
Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways. SNHL occurs in about 1/500 newborns. Most have this as an isolated condition with no other medical issues (nonsyndromic). About half (50%) are believed to have a genetic cause, most likely an autosomal recessive inheritance where both normal hearing parents are carriers of a genetic mutation. Not all genetic mutations known to cause sensorineural hearing loss have been identified.
What are the chances my child will have this type of hearing loss?
The mother does not have a family history of hearing loss, nor does the donor. Given the birth of 2 children with this condition, it is highly likely that the donor is a carrier. It is only when 2 copies of a hearing loss mutation, one from each parent, are passed to a child that hearing loss occurs. The chance that another mother would also carry one hearing loss mutation is about 3% (1/33). The risk of an affected child with donor 2423 if the mother is not tested would be about ½% to 1% (1/132). A mother can be tested to see if she carriers one of the known mutations, and if negative reduce her risk for an affected child further. If the mother is tested and found to be negative, the risk for an affected child with an autosomal recessive form of sensorineural nonsyndromic hearing loss becomes much smaller at about 1/1000.
Children from this donor have a 50% of being carriers of the same mutation assumed to be in the donor. Carriers of one mutation have normal hearing but are themselves at risk for having children with sensorineural hearing loss. Since the testing has not shown a specific genetic mutation, testing children by genetics at this point is not likely to be helpful. More importantly, children from this donor should have their hearing evaluated through their pediatrician’s office if not already done so. Many states require that all newborns be tested before they leave the hospital after birth. Future partners can have carrier testing and if negative reduce the risk of an affected child.
How is carrier testing done?
Mother’s can pursue carrier testing for nonsyndromic hearing loss by testing for mutations in the gene GLB2 (connexin 26) and GJB6 (connexin 30). This can be done though your doctor’s office. A mutation panel currently detects most but not all of the mutations. We recommend a consultation with a genetic counselor to review your testing options.
If you have stored semen samples on site with your doctor’s facility or at CLI you are entitled to a full refund for the cost paid per dose. For specimens stored at CLI, we will keep your account open until we hear from you. Conversely, if you wish to close your CLI storage account and seek a refund for your stored specimens, you must contact us. Please call 800-466-2796 and say you would like a refund on your 2423 vials stored at CLI. Only unused semen specimens will qualify for a refund. Any incurred shipping or storage costs are not refundable. If the specimens are stored at your doctor’s office and you do not wish to keep the specimens for future use and desire a refund, you must authorize destruction at your doctor’s facility and that facility must send us a letter indicating that they have complied with that request which must include your name, donor #, number of vials destroyed and each vials specimen date. Please ask them to use the address and/or fax number below. After receiving that letter from the offsite storage facility, we will process your refund. There is no time limit on your request for requesting a refund.
You may keep your specimens and use them in the future if you wish. You may also order more semen units from CLI if they are available, in order to have a full sibling. Any units of this donor sent from CLI will require that the informed consent be signed, notarized and returned prior to shipment. This includes units sent from storage accounts as well as new purchases for families seeking to have additional children by this donor. A copy of that informed consent is available by contacting CLI. A full refund is available for any units in storage unless a consent is signed, after which our standard return policy applies (50% for units that have not left CLI and no refund for units which have left CLI).
Donor profile information in your online order history for this donor will not be accessible. But we are happy to forward you electronic copies by email. Please contact us and we would be glad to assist you. Our goal is to have the donor information fully accessible in a few months so you can check for any other updates over time by viewing the donor's summary profile on the donor search.
CLI has a full time certified genetic counselor, Suzanne Seitz, MS, to answer your questions.
In addition our staff is available to help process refunds, exchanges and forward donor information. Please call us at 1-800-466-2796 for more information.