Wednesday, September 2, 2009

Working to Create Positives from Claire's Death

Dear Mothers Mik Bank Medical Director,                                                                    September 2, 2009

I recently came into contact with your organization through difficult circumstances. To make a sad story brief, I have lost two babies in the last 10 months.

In the months following the loss of my son, Jackson, I heard about your organization. I sorrowed over the lost opportunity to give life to others with his milk. Never could I have imagined that another opportunity to donate would soon come. July 8, 2009, my daughter, Claire, died shortly after birth. She was 29 weeks, so the milk my body produced for her was valuable.

Immediately I set out on the donation course. The hospital drew blood for the 5 tests your organization requires the day after I gave birth. I did the verbal questionnaire from my hospital bed. Lactation specialists brought a double breast pump to my room so I could start donating right away. That Claire could give to others through my milk was a silver lining in my darkest hour.

But the storms swept quickly back in when the HTLV test came back reactive and I was faced with a freezer full of tainted milk and the horror that I may have passed this incurable virus unknowingly to my other children and husband. I was devastated.

Further confirmatory testing has revealed that the original test was a false positive. I have researched this situation and found that pregnant women have a tremendously higher rate of false positives with the HTLV test. The following is a direct quotation from the Cord Blood Registry:

Due to the sensitivity of the tests used at BSL and the hormone levels of the mom at the time of the maternal blood draw, it is not uncommon for moms to experience a false positive result; even though they were never exposed to the particular infectious disease they have tested reactive for. A false positive result in a pregnant mom can be due to the high levels of hormones in the mom's blood stream, which can cross-react with the test and produce a false positive test result.

The antibody test for HTLV types 1/2 is notorious for producing false positive test results. The American Red Cross also has a significant number of false positive results with this Infectious Disease Marker, but CBR has an almost 6 times higher false positive rate than in a non-pregnant population.

If the result is reactive, and the mom has not lived in high incidence areas or participated in high risk lifestyles, chances are good that it is a false positive test result. HTLV is passed through breast milk; however, moms should use common sense when they receive a reactive test result. If the mom has been breast feeding her baby she should continue to do so until she has consulted with her physician and is instructed to do otherwise or is retested.

The CBR phone number is 1-800-776-3285 if you have further inquiries.

What I am asking of you is that you take this research into consideration and modify your website and any other public information your company advertises. One simple sentence could have saved me such emotional turmoil as well as provided your bank with several hundred more ounces of milk. Please consider advising mothers not to have blood drawn until 6 weeks after giving birth.

While most of the mothers contacting you are already past this point, some in sad circumstances such as myself will need this small bit of priceless information.

My journey with your organization was not in vain if you can take what I have learned and fine tune your donation process. My hope is that other mothers like myself have the opportunity to donate milk for more than just research.

The PHX hospital I delivered in is currently making a handout about your company for families who’ve lost infants. They will be advising mothers not to draw blood in the first 6 weeks after giving birth. As they refer mothers to you it is my hope that you are equipped as well to inform them accurately so that the maximum milk amount may be donated.

Please correspond with your thoughts. Thank you for your time and consideration.


Kelly Haught

recieved a wonderful, quick responce:

Dear Kelly. Thank you for the letter. My staff was greatly upset with the initial blood test results as well. I spoke to our Medical Director about your references, although he does not accept the findings as a tool for milk banking, I will bring this up and challenge the guidelines for the milk banks on a national level in Kalamazoo Michigan next week at our annual meeting. On a better note, I spoke to ****** at the Texas milk bank about our situation. If you have the confirmatory result and will allow me to transfer all of the paperwork to her, she will accept your milk. They are in a terrible situation where they cannot find enough milk and therefore, will accept false positive mother’s milk at this time. We did not know that was an option for you at the time of the correspondence. I deeply apologize for the delay.


***** RN, MSExecutive DirectorMothers' Milk Bankwww.milkbanksj.orgPresidentHuman Milk Banking Association of North Americawww.hmbana.org751. S. Bascom AvenueSan Jose, CA 95128408-998-45501-866-998-4550408-885-3959Fax 408-297-9208

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