September 12, 2009
One of the hardest parts about this second loss is that I don’t hear from my daughter.
Less than a week after my son died he visited me; told me how sorry he was, but that it if he hadn’t died Blue and I would never reach our “full purpose in life.” I wondered at the time, was this really him or just my mind imagining reasons, purpose, to help me cope with the bizarre, cruel life I’d been so suddenly yanked into. But more visits followed, more feelings, more counsel. Butterflies, butterflies, butterflies! Others, even, saw butterflies and sensed Jackson there. While each visit was different, the impression my husband and I got of him was the same. Imagine your closest family member. If you lost your sight yet you would know he/she was in the room with you. You know their cadence when they speak. You feel their spirit – whether it’s timid or course or empathetic or cynical. Those distinct traits which make them who they are, which make them your closest confidant, come through on so many levels. That is familiarity.
So it’s been with Jackson, so that over this painful year I have gotten to know him well enough to recognize his strong, distinct presence as soon as it comes.
I waited for Claire to visit in such a way. I sensed for her personality while in the hospital like I felt it the first 20 weeks of my pregnancy. I waited while I lay in bed with oxygen over my face trying to send my health and calmness through the cord to her sick body. I heard nothing, I felt nothing.
She died in my arms. No doubt her spirit was there in the room with us those precious moments after she passed. But I couldn’t greatly sense her, much less communicate with her.
Was it my own exhaustion? Did the drugs they administered get in the way? Was my grief so deep that I functioned only on a shallow physical level?
I would wait for Claire’s counsel, her love, her visit.
At Claire’s funeral, a dear friend told me that maybe there is no purpose: this is a cruel world and cruel things just happen. Maybe, I thought, but that goes against all my life experiences. More confusion. Over a month passed and the emptiness seemed to stretch my broken, black heart even more. All I got was more loneliness and pain. I was so angry that God would not her speak to me. I was mad that He wouldn’t give me some clue as to why we were forced into this trial.
Then my daughter got a father’s blessing for the new school year. It was beautiful and sacred. I want to share one part because it answered my questions and released my anger. Blue told me after that he wanted to tell Ami her sister would be with her this year, that she would feel her there. He had been directed to tell Caidgen that Jackson would be with him this year, after all. But he couldn’t. Instead the impression came that Claire is still developing and growing. She has much to learn. Maybe not this year, but later on in Ami’s life, Ami will sense and know that her sister is with her. Ami will be very important in Claire’s life, actually. They will have a deep closeness.
Understanding has once more been my balm for sickening anger. The first time I “saw” Jackson he was not a baby – not even a child, but a young man. I saw him in a way that would help me understand that spiritually, he is older. He is so strong, wise, loving, developed. That is why he can break through and serve as one of God’s angels to bless our family. Claire is young. I picture her like a new, precious spirit from Heavenly Father. Poor thing had such tremendous physical sufferings to endure while here... The insights and strengths she learned I would love to know.
Now she is without pain and in a brighter place. I don’t know what she is doing, but I believe the words of Ami’s blessing; that she is still growing. And one day, when the time is right and she is able, she will bless our family with her presence. I look forward to the day when Ami feels her love and knows that all this time of loving and missing Claire was not in vain. I feel peace about it. I realize we should never take for granted even a quick glimmer from the other side. Heavenly communication is not child’s play. It is real. Just as I have suspected the last two years concerning my father who passed, there are very good reasons I don’t sense him here. He’s got quite a lot more to do where he is and frankly I don’t envy him. But that’s another story! My grandma, conversely, was a very spiritual person and I have already felt her with me numerous times, though she only died a year ago. Ironically, nostalgic smells came and I sensed her so much in the weeks before Claire died that I often wondered if she was trying to tell me something. I just felt her love… We had named Claire after her. Grandma seemed to encourage me in the day-to-day trials of my scary pregnancy. Now I wonder, was she bolstering me for the dark days ahead? Whatever work she was doing, she was acting as angel, ministering to our family and I am grateful.
What I am getting at is that each person and their journey is unique. I don’t “feel” Jackson with me because it simply makes me feel better. If it was just that, Claire would be “with me” every minute! I feel him at times because he is here at times. I don’t feel Claire because she is not here, but doing an important work elsewhere. She is no less alive or important to our family. All you bereaved mothers who wait and wonder where is your sweet child now, and ache because there just don’t seem to be signs, take heart. I believe your babies are alive, safe, and would communicate if they could. Hopefully they will when they – or you – are ready. What they are doing now that keeps them away is vital. One day I believe all mysteries will come to light. Until then we wonder, question, even shout sometimes while we painfully press on with our own purposes here on earth.
Saturday, September 12, 2009
Saturday, September 5, 2009
Those Early Days of Isolation
Of course the feelings below aren't all reflections of true statements. But they do reflect, I believe, the true range of emotions parents go through after losing babies. There is much scattered, apparantly random thoughts. But we are complex, aren't we? All these thoughts and feelings exist at simultaneously inside us. I hope others in pain may feel less alone when they catch a bit of themselves in where I was less than a month after our second baby was buried.
August 4, 2009
I hate August, by the way. Never a month I wanted to have babies in. At least there’s that...
Tonight I paid bills. Under the “play” section I entered in: Hawaii. The entry before it said: Fetal Doppler, 90.00. It jumped out at me. Life can change so fast. The course you are on can be jolted from under your feet and suddenly you can be reeling to catch up with the new place you’re journeying to.
A voice in my head says, Get over it, Kelly. Everyone else has. I spoke with ***for a minute tonight and she told me how she’s trying to fix her Xbox because Lost comes thru it and she can’t live without watching Lost. I hung up quickly. She’s over it. Everyone’s over it.
But I am consumed with my pain. Maybe I am selfish in it. I want people to care for us. I want someone to give up some of their time or resources for us because that shows me the Claire has altered their life. But often what we get are cards in the mail with brief cliches that slide off my skin.
I am startled by how I can’t talk to my friends. ****’s visit showed me that. I sat silent and counted the minutes til it was over. I called ****tonight and - wow! – I had to force out every line. I am perfectly functional to my kids and Blue, but to everyone else, bam: I am like a freak .I called **** tonight out of moral determination. Being so left alone teaches me how important it is for family to be there. In times like this you need your family to carry you through. It hurt so much that family went vacationing the week after Claire died. Not having them there makes it all the harder, drives the pain deeper.
Family roles and traditions are more than quaint activities. They are vital to the survival of families. Even if it's just sitting on the couch with the suffering. It matters. It lasts. It builds a stronger family unit.
Monday, our last day in Hawaii, our car battery completely died. We don’t know anyone in the city. A simple jump turned into a nightmare. Our rental company would charge us 50.00 to come jump us – apalling. A man parked next to us while Blue hashed it out (politely) on the phone. He said he didn’t have cables and stalked off quickly. After an hour a nice looking old couple was parked close to us in the garage and had jumper cables! Tada! Light breaking thru. The man said he had them, but he would not give us a jump. He and his wife put on their huge black sunglasses and drove away.
Pray, I thought. This is when you pray for help. Show your kids how to deal with these sticky situations and trust that the Lord will send aide. I told the Lord to Go to Hell. He slammed my prayers and life right into hot concrete. Why would I ask for his help now?
I could not do it. I could not do it. How disappointed the Christian world must be in me. Sometimes I am shocked at my own angry vigor. But as more and more of my life slips away, any control on my side in vain, the anger grows. Nothing is so sacred to me as children. Nothing has ever mattered more to me in all my life, in the deepest parts of me that dream and vision, than a little functioning family. So sacred, so shattered.
I really feel like people who have lost their deepest dream can identify with what I feel, what I carry inside me each day. Not everyone has lost what they valued most. This is a quite isolating place to be. People build relationships on commonality. When that is gone, everything is a little harder. It’s a little more forced. I am back into the moral obligations of society that I referred to. I can not love some people spontaneiously by the ties that bind, so I make ties.
I went to Hawaii to bleed out some of my pain on it’s sacred land. It’s almost too pretty to taint that way, but in it’s vastness I feel that it can handle the blood from my tears. Now, home again, my insides are ripped open. It’s so hard to be home. Books say don’t do anything major for a year after losing a child. You just can’t think right. I don’t care. I want out of this house because everything about it slaps me in the face. Here’s the family taken from you. Here are the broken dreams. Here is a most strenuous physical effort endured in vain. Here are where you dreampt up your babies and where you grew them and where you prepared for them, and where you cried wanting to be a better mother for them. And here is where you walk empty without them each day: Once before, for Jackson, in a noble effort to get up and get on with things. Now you drag on alone, devoid of the hope and forward pursuit.
I feel so lonely here. It’s quite overpowering. I feel so sad and so alone. I work for my kids but they are in bed now and so it’s just me and this pain again.
My health has been taken. I stood and watched while the kids and Blue played in Hawaii. I tire quicker. I am 15 pounds overweight. I feel like an invalid. My children have been taken. Many, many of my loved ones have been taken. What else? Lately I am like a scared child in a corner afraid to go out and live in the world because I know the pattern. I feel like the part of me that was a risk taker is extinguished.
Blue was offered the job we've prayed for for a year. The offer came while we were in Hawaii. I am scared to make the change. It’s everything I wanted! For so long I wanted this. But now I have to trust Blue in the intuiting if it’s the right thing. I can’t feel it and go with it right now. I feel like, why look for the signs? I had them with Claire and it turned out opposite of what they indicated. I can’t place trust on intuition anymore. But that is all I am, intuition. That is how I have always directed my life. So now without that I am lost.
Lost.
August 4, 2009
I hate August, by the way. Never a month I wanted to have babies in. At least there’s that...
Tonight I paid bills. Under the “play” section I entered in: Hawaii. The entry before it said: Fetal Doppler, 90.00. It jumped out at me. Life can change so fast. The course you are on can be jolted from under your feet and suddenly you can be reeling to catch up with the new place you’re journeying to.
A voice in my head says, Get over it, Kelly. Everyone else has. I spoke with ***for a minute tonight and she told me how she’s trying to fix her Xbox because Lost comes thru it and she can’t live without watching Lost. I hung up quickly. She’s over it. Everyone’s over it.
But I am consumed with my pain. Maybe I am selfish in it. I want people to care for us. I want someone to give up some of their time or resources for us because that shows me the Claire has altered their life. But often what we get are cards in the mail with brief cliches that slide off my skin.
I am startled by how I can’t talk to my friends. ****’s visit showed me that. I sat silent and counted the minutes til it was over. I called ****tonight and - wow! – I had to force out every line. I am perfectly functional to my kids and Blue, but to everyone else, bam: I am like a freak .I called **** tonight out of moral determination. Being so left alone teaches me how important it is for family to be there. In times like this you need your family to carry you through. It hurt so much that family went vacationing the week after Claire died. Not having them there makes it all the harder, drives the pain deeper.
Family roles and traditions are more than quaint activities. They are vital to the survival of families. Even if it's just sitting on the couch with the suffering. It matters. It lasts. It builds a stronger family unit.
Monday, our last day in Hawaii, our car battery completely died. We don’t know anyone in the city. A simple jump turned into a nightmare. Our rental company would charge us 50.00 to come jump us – apalling. A man parked next to us while Blue hashed it out (politely) on the phone. He said he didn’t have cables and stalked off quickly. After an hour a nice looking old couple was parked close to us in the garage and had jumper cables! Tada! Light breaking thru. The man said he had them, but he would not give us a jump. He and his wife put on their huge black sunglasses and drove away.
Pray, I thought. This is when you pray for help. Show your kids how to deal with these sticky situations and trust that the Lord will send aide. I told the Lord to Go to Hell. He slammed my prayers and life right into hot concrete. Why would I ask for his help now?
I could not do it. I could not do it. How disappointed the Christian world must be in me. Sometimes I am shocked at my own angry vigor. But as more and more of my life slips away, any control on my side in vain, the anger grows. Nothing is so sacred to me as children. Nothing has ever mattered more to me in all my life, in the deepest parts of me that dream and vision, than a little functioning family. So sacred, so shattered.
I really feel like people who have lost their deepest dream can identify with what I feel, what I carry inside me each day. Not everyone has lost what they valued most. This is a quite isolating place to be. People build relationships on commonality. When that is gone, everything is a little harder. It’s a little more forced. I am back into the moral obligations of society that I referred to. I can not love some people spontaneiously by the ties that bind, so I make ties.
I went to Hawaii to bleed out some of my pain on it’s sacred land. It’s almost too pretty to taint that way, but in it’s vastness I feel that it can handle the blood from my tears. Now, home again, my insides are ripped open. It’s so hard to be home. Books say don’t do anything major for a year after losing a child. You just can’t think right. I don’t care. I want out of this house because everything about it slaps me in the face. Here’s the family taken from you. Here are the broken dreams. Here is a most strenuous physical effort endured in vain. Here are where you dreampt up your babies and where you grew them and where you prepared for them, and where you cried wanting to be a better mother for them. And here is where you walk empty without them each day: Once before, for Jackson, in a noble effort to get up and get on with things. Now you drag on alone, devoid of the hope and forward pursuit.
I feel so lonely here. It’s quite overpowering. I feel so sad and so alone. I work for my kids but they are in bed now and so it’s just me and this pain again.
My health has been taken. I stood and watched while the kids and Blue played in Hawaii. I tire quicker. I am 15 pounds overweight. I feel like an invalid. My children have been taken. Many, many of my loved ones have been taken. What else? Lately I am like a scared child in a corner afraid to go out and live in the world because I know the pattern. I feel like the part of me that was a risk taker is extinguished.
Blue was offered the job we've prayed for for a year. The offer came while we were in Hawaii. I am scared to make the change. It’s everything I wanted! For so long I wanted this. But now I have to trust Blue in the intuiting if it’s the right thing. I can’t feel it and go with it right now. I feel like, why look for the signs? I had them with Claire and it turned out opposite of what they indicated. I can’t place trust on intuition anymore. But that is all I am, intuition. That is how I have always directed my life. So now without that I am lost.
Lost.
What Happened With Our Sixth Angel - July 8, 2009
July 9, 2009
It's easier right now to just send this out rather than tell the story a million times.
Kelly was 29 weeks along and everything seemed perfect. She was still a little nervous though, since losing Jackson was such a shock. She even bought a doppler last week so that she could hear Claire's heart.
On Monday I was staying at my parent's after going to a game with my dad and brothers. Kelly was at home and was nervous since the baby seemed to stop moving as much as she had the previous few weeks. She felt like she should go to the hospital to check it out. She got the kids up at 11pm, dropped them off at her mom's and went to the hospital. After monitering the heartrate for over an hour they felt it was a little sluggish. The heart rate was normal, but never seemed out of a sleep pattern. They thought the rythm indicated the baby was anemic. They continued to monitor her and run tests. Kelly texted me about 4am and so I came to the hospital. High Risk doctors were called.
As I was walking into the hospital Kelly called to say that they determined the baby had hydrops. I don't remember hearing anything about hydrops in nursing school so I didn't know how serious it was. Basically it's defined as having fluid in 2 or more organ compartments. The baby's lungs and abdomen were filled with fluid. They assembled an amazing team of specialists to our case and even conferred with doctors from around the country. There are literally hundreds of potential causes of hydrops. They told us that they would do amniocentesis to draw amniotic fluid, attempt to drain fluid from lungs and belly, and draw blood from the cord. They were able to draw amniotic fluid and 60cc of fluid from the baby's belly. As Kelly recovered through that night the baby's heart pattern started heading in a dangerous direction and they decided early that morning to do an emergency c-section. With 7 doctors and 6 nurses they deliverd Claire Elizabeth at 7:04am 7/8/09. She was very, very edemetous - swollen in her head and limbs. They put in chest tubes in both lungs and tubes in the abdomen to drain off the fluid. They intubated her and put her on a ventilator.
She was attempting to breathe on her own after delivery so that was a good sign. All through this process they let us know that her chances were not good. We had a lot of hope that she would survive despite their concern. They rushed her to the NICU and continued draining her lungs and belly as well as giving her blood transfusions for the severe anemia. We had the kids come the hospital and meet their sister. They loved seeing her. She would squeeze our hands when we placed a finger in hers.
As the third hour passed Claire went from being somewhat stable, to not being able to perfuse oxygen to her lungs and other organs. She began to deteriorate. At the end of the 4th hour it they assured us they had done all they could for her and any time left on the machine would just do more damage to her. She wasn't getting much oxygen at all at this point and so we painfully decided it was time to stop.
We held her in our arms as they turned off the machines.
I thought that nothing could be more painful than losing a full term baby like Jackson last year, but holding our baby in our arms as she died surpassed anything from his death. I am grateful that I was able to hold her though, as she left this world. We spent the rest of the day and the next morning with her in our room. She was beautiful. And words can't describe how much I'll miss her.
We are home now and just trying to deal with the what one doctor said was "lightning striking twice". According to everything they have seen they said that the two deaths are in no way related. We are awaiting more answers as the litany of tests ordered start to yield information over the next few weeks.
Thank you all for your prayers and thoughts on our behalf. We will need them.
Know that if you got this message it's because I have felt loved by you in my life and need to share my burden with you.
Blue
It's easier right now to just send this out rather than tell the story a million times.
Kelly was 29 weeks along and everything seemed perfect. She was still a little nervous though, since losing Jackson was such a shock. She even bought a doppler last week so that she could hear Claire's heart.
On Monday I was staying at my parent's after going to a game with my dad and brothers. Kelly was at home and was nervous since the baby seemed to stop moving as much as she had the previous few weeks. She felt like she should go to the hospital to check it out. She got the kids up at 11pm, dropped them off at her mom's and went to the hospital. After monitering the heartrate for over an hour they felt it was a little sluggish. The heart rate was normal, but never seemed out of a sleep pattern. They thought the rythm indicated the baby was anemic. They continued to monitor her and run tests. Kelly texted me about 4am and so I came to the hospital. High Risk doctors were called.
As I was walking into the hospital Kelly called to say that they determined the baby had hydrops. I don't remember hearing anything about hydrops in nursing school so I didn't know how serious it was. Basically it's defined as having fluid in 2 or more organ compartments. The baby's lungs and abdomen were filled with fluid. They assembled an amazing team of specialists to our case and even conferred with doctors from around the country. There are literally hundreds of potential causes of hydrops. They told us that they would do amniocentesis to draw amniotic fluid, attempt to drain fluid from lungs and belly, and draw blood from the cord. They were able to draw amniotic fluid and 60cc of fluid from the baby's belly. As Kelly recovered through that night the baby's heart pattern started heading in a dangerous direction and they decided early that morning to do an emergency c-section. With 7 doctors and 6 nurses they deliverd Claire Elizabeth at 7:04am 7/8/09. She was very, very edemetous - swollen in her head and limbs. They put in chest tubes in both lungs and tubes in the abdomen to drain off the fluid. They intubated her and put her on a ventilator.
She was attempting to breathe on her own after delivery so that was a good sign. All through this process they let us know that her chances were not good. We had a lot of hope that she would survive despite their concern. They rushed her to the NICU and continued draining her lungs and belly as well as giving her blood transfusions for the severe anemia. We had the kids come the hospital and meet their sister. They loved seeing her. She would squeeze our hands when we placed a finger in hers.
As the third hour passed Claire went from being somewhat stable, to not being able to perfuse oxygen to her lungs and other organs. She began to deteriorate. At the end of the 4th hour it they assured us they had done all they could for her and any time left on the machine would just do more damage to her. She wasn't getting much oxygen at all at this point and so we painfully decided it was time to stop.
We held her in our arms as they turned off the machines.
I thought that nothing could be more painful than losing a full term baby like Jackson last year, but holding our baby in our arms as she died surpassed anything from his death. I am grateful that I was able to hold her though, as she left this world. We spent the rest of the day and the next morning with her in our room. She was beautiful. And words can't describe how much I'll miss her.
We are home now and just trying to deal with the what one doctor said was "lightning striking twice". According to everything they have seen they said that the two deaths are in no way related. We are awaiting more answers as the litany of tests ordered start to yield information over the next few weeks.
Thank you all for your prayers and thoughts on our behalf. We will need them.
Know that if you got this message it's because I have felt loved by you in my life and need to share my burden with you.
Blue
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.
Sincerely,
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.
Sincerely,
***** 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
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.
Sincerely,
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.
Sincerely,
***** 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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