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Clarification for Neonatal Alloimmune Thrombocytopenia
The advice given by a doctor on this board about the blood disorder in babies, Neonatal Alloimmune Thrombocytopenia is erronious. As a mother to two NAIT babies, the condition is not a risk factor for mothers who have platelet issues themselves (ITP, TTP, etc.) It is a platelet incompatibility caused when the mother is lacking a certain antigen that the father has. There is no good prenatal screening in place because platelet typing is very costly, so therefore, most parents don't know until they have a baby born with the condition. Unfortunately,when a baby's platelets are too low, this puts them at risk for bleeding in their brain. Some babies can recover, but many suffer degrees of brain damage and even death. Once parents have a diagnosed baby with NAIT, they can find out what the reoccurence will be (either a 50% chance or 100% chance) by having a Maternal Fetal Medicine doctor send off their bloods to the Wisconsin Blood Center. Once that is determined, a treatment plan can be in place. This will vary according to their previous child's history. Treatments start anywhere from 12-20 weeks and consist of a combination of weekly or biweekly IVIG infusions and the use of the steroid Prednisone. Also, your MFM may want to perform a cordocentesis or Percutaneous Umbilical Blood Sample (PUBS). A c-section delivery is usually the safest choice and done between 36 and 38 weeks. If you would like more accurate information, please find our health group on yahoo. Our address can be found on the Wikipedia page under NAIT. Please do not accept the doctor's advice at face value. Many doctors, including OB/GYNs have very little understanding of NAIT, how it works, the fact that it really isn't that rare and proper treatment and protocol.
This discussion is related to Neonatal Alloimmune thrombocytopenia (NAIT).
This discussion is related to Neonatal Alloimmune thrombocytopenia (NAIT).
Sorry, I forgot the form cleared out email addresses. Feel free to email me at my kent at naitparent.com email address or through the naitparent.com/contactus.aspx page.
Keep pushing on the early treatment. The higher the platelet count and lower the immune activity is when treatment starts, the better. There is data to support this, yet ironically some of it is provided by the very doctors who champion the late starts!
For any of you who think anything I have said is too harsh, after being very involved in the NAIT community for the past 11 years, I have simply heard of too many needless ICHs and severe counts and want it to stop. This is not rocket science. Treat early and aggressively, and use non-invasive tests to help guide when to treat more aggresively. If you are satisfied with 20% born with severly low counts and 3% to 5% with ICHs, plus complications, then by all means, seek out the Yahoo group and follow their advice to call Dr. Bussel's office if you are in the US. I sincerely hope that those doctors some day treat to achieve higher counts as it would help those who use or follow them, but until then, you should know the results to expect. It's just the facts. Many of us are aware of a better way to treat NAIT, so where I come from people welcome that news; not attack it.
Cheers,
Kent
Keep pushing on the early treatment. The higher the platelet count and lower the immune activity is when treatment starts, the better. There is data to support this, yet ironically some of it is provided by the very doctors who champion the late starts!
For any of you who think anything I have said is too harsh, after being very involved in the NAIT community for the past 11 years, I have simply heard of too many needless ICHs and severe counts and want it to stop. This is not rocket science. Treat early and aggressively, and use non-invasive tests to help guide when to treat more aggresively. If you are satisfied with 20% born with severly low counts and 3% to 5% with ICHs, plus complications, then by all means, seek out the Yahoo group and follow their advice to call Dr. Bussel's office if you are in the US. I sincerely hope that those doctors some day treat to achieve higher counts as it would help those who use or follow them, but until then, you should know the results to expect. It's just the facts. Many of us are aware of a better way to treat NAIT, so where I come from people welcome that news; not attack it.
Cheers,
Kent
Dear Jackamol,
I am so thankful your baby avoided an ICH, and yes, as with many things in medicine, the exception can work out better than the rule in isolated cases, but overall, FBS/PUBS has been a losing proposition. There is a reason doctors are abandoning its use. Much of it depends on the skill of the operator, and you may have had highly skilled doctor, but if your story leads another to embrace FBS using a less experienced doctor and the procedure kills the baby, despite good intentions, it turns out sad. I know at around the peak of the Bussel, Berkowitz, et. al., PUBS/FBS tragedies, they had 3 babies out of 91 pregnancies die directly from FBS and 14 others cause early delivery "among other complications". That's either a death or serious complication in over 18% of the pregnancies as reported at the Platelet Immunology minutes taken at the Boston Plaza hotel in July of 2002. If you are using one of the doctors in the UK that has performed hundreds if not thousands of FBS without issue, then your risk of a direct issue is clearly much less. But at some point we need a new doctor and the first 100 patients or so become the training grounds -- it's hard to get around this need. There is also the added risk of the FBS essentially acting like a booster vaccination by exposing the mother to the baby's platelets. Ever heard of a good FBS count followed by a terribly low birth count? I have, and too many times. While some of this may just be the normal trend we see from increased transplacental activity, it could also be a direct result of the FBS. In your case, while you believe the FBS alerted you to a severely low count that you could transfuse regularly. The FBSs could have been heaping gasoline on the fire, too, so that within a couple weeks, the platelet destruction could be so severe that you would have to transfuse every couple days where most may only do it weekly. While this can work, it also comes with increased risks as the math can add to a significant figure the more and more you roll the dice with FBS. Again, I thank God your child avoided an ICH and think the FBS may have indeed saved their life. Possibly the IVIG did, too, as some research has indicated this. I just want parents to know the risks and that most current NAIT research says not to use FBS. Also, forums like this or some group on Yahoo are no substitute for good doctors and reading the actual source of information. (That is why we try to cite so much on our www.naitparent.com website and are willing to substantiate information whenever possible.) Non-invasive testing provides the best approach that I have seen so far. Despite Dr. Bussel writing no reliable non-invasive tests exist, Dr. Kwak-Kim and others have used them with much success for decades, and the noted researcher Dr. Cecile Kaplan, also recently published they can be reliably used. Dr. Bussel was clearly wrong as they do exist and work. My and other children are living proof. I have two children that were born with normal platelet counts using less than half the IVIG that most use and there is no way I would have used less if I were not confident in the tests. While I would like to see more research in that area, those of you who know me, know that I research well and lean towards erroring on the side of caution. While not perfect, Dr. Kwak-Kim's test clearly provide an advantage over the blind approach used by others. While I am happy to see Dr. Kaplan join the non-invasive testing fray, MAIPA antibody testing alone is not extremely reliable, so I hope they look to using other measures as well to help perfect their methods as Dr. Kwak-Kim does. Lastly, kudos to you for supporting early treatment. It definitely can help and there is much data to support this, so we need to keep the pressure on doctors that are promoting late treatment. Parents and groups supporting those doctors are NOT helping advance NAIT treatment. While I understand that parents may need to use them for lack of any better option, but to promote them and their late treatment starts? That is not help or support by any definition no matter how well intended. It makes about as much sense as any other disease's support group saying to wait to treat it until a time when 50% are in advanced stages. This cycle of 20% severely low counts, including some ICHs, needs to stop and those of you who are still members of that Yahoo group need to find the courage to stand up for better care. I tried, but ultimately found leaving was necessary to reach more NAIT parents without the distractions of the guardian(s) of late starts telling every NAIT parent to "call Dr. Bussell" and arguing against better treatment. I hope possibly you have more success than I, and please know you are welcome at naitparent.com. By moving on, we have been able to impact care more, so it is possible. Any of you hearing of birth counts in treated cases below 50k? That should be your wake-up call as the late Dr. Beer said he felt he could avoid that nearly 100% of the time using his treatment approach. Please feel free to contact me for more information at ***@**** or via the website contact form.
I am so thankful your baby avoided an ICH, and yes, as with many things in medicine, the exception can work out better than the rule in isolated cases, but overall, FBS/PUBS has been a losing proposition. There is a reason doctors are abandoning its use. Much of it depends on the skill of the operator, and you may have had highly skilled doctor, but if your story leads another to embrace FBS using a less experienced doctor and the procedure kills the baby, despite good intentions, it turns out sad. I know at around the peak of the Bussel, Berkowitz, et. al., PUBS/FBS tragedies, they had 3 babies out of 91 pregnancies die directly from FBS and 14 others cause early delivery "among other complications". That's either a death or serious complication in over 18% of the pregnancies as reported at the Platelet Immunology minutes taken at the Boston Plaza hotel in July of 2002. If you are using one of the doctors in the UK that has performed hundreds if not thousands of FBS without issue, then your risk of a direct issue is clearly much less. But at some point we need a new doctor and the first 100 patients or so become the training grounds -- it's hard to get around this need. There is also the added risk of the FBS essentially acting like a booster vaccination by exposing the mother to the baby's platelets. Ever heard of a good FBS count followed by a terribly low birth count? I have, and too many times. While some of this may just be the normal trend we see from increased transplacental activity, it could also be a direct result of the FBS. In your case, while you believe the FBS alerted you to a severely low count that you could transfuse regularly. The FBSs could have been heaping gasoline on the fire, too, so that within a couple weeks, the platelet destruction could be so severe that you would have to transfuse every couple days where most may only do it weekly. While this can work, it also comes with increased risks as the math can add to a significant figure the more and more you roll the dice with FBS. Again, I thank God your child avoided an ICH and think the FBS may have indeed saved their life. Possibly the IVIG did, too, as some research has indicated this. I just want parents to know the risks and that most current NAIT research says not to use FBS. Also, forums like this or some group on Yahoo are no substitute for good doctors and reading the actual source of information. (That is why we try to cite so much on our www.naitparent.com website and are willing to substantiate information whenever possible.) Non-invasive testing provides the best approach that I have seen so far. Despite Dr. Bussel writing no reliable non-invasive tests exist, Dr. Kwak-Kim and others have used them with much success for decades, and the noted researcher Dr. Cecile Kaplan, also recently published they can be reliably used. Dr. Bussel was clearly wrong as they do exist and work. My and other children are living proof. I have two children that were born with normal platelet counts using less than half the IVIG that most use and there is no way I would have used less if I were not confident in the tests. While I would like to see more research in that area, those of you who know me, know that I research well and lean towards erroring on the side of caution. While not perfect, Dr. Kwak-Kim's test clearly provide an advantage over the blind approach used by others. While I am happy to see Dr. Kaplan join the non-invasive testing fray, MAIPA antibody testing alone is not extremely reliable, so I hope they look to using other measures as well to help perfect their methods as Dr. Kwak-Kim does. Lastly, kudos to you for supporting early treatment. It definitely can help and there is much data to support this, so we need to keep the pressure on doctors that are promoting late treatment. Parents and groups supporting those doctors are NOT helping advance NAIT treatment. While I understand that parents may need to use them for lack of any better option, but to promote them and their late treatment starts? That is not help or support by any definition no matter how well intended. It makes about as much sense as any other disease's support group saying to wait to treat it until a time when 50% are in advanced stages. This cycle of 20% severely low counts, including some ICHs, needs to stop and those of you who are still members of that Yahoo group need to find the courage to stand up for better care. I tried, but ultimately found leaving was necessary to reach more NAIT parents without the distractions of the guardian(s) of late starts telling every NAIT parent to "call Dr. Bussell" and arguing against better treatment. I hope possibly you have more success than I, and please know you are welcome at naitparent.com. By moving on, we have been able to impact care more, so it is possible. Any of you hearing of birth counts in treated cases below 50k? That should be your wake-up call as the late Dr. Beer said he felt he could avoid that nearly 100% of the time using his treatment approach. Please feel free to contact me for more information at ***@**** or via the website contact form.
Im all for early treatment, the earlier the better, having lost a baby with ICH at 20 wks before treament started, but i do have to say in my case PUBS/FBs etc did save my last babys life. he had 9 inuetro platelts transfusions as the counts dropped too quickly. within 48 hrs they had dropped from 380 to 7k. PUBS can be risky but doing nothing in my case wasnt an option.
First off, I am not a doctor, but have a great deal of respect for many and have learned much from them. Thanks SNEKANE for the post and information, but I think you misunderstood the intent of some of the doctor's other post, plus I think some of the information you wrote needs updated (as will this post as new information comes out frequently.) A pregnant mother who has active ITP, or especially one that had PTP (Post Transfusion Purpura) is much more likely to have a severely thrombocytopenic baby than the average pregnancy in the general population, and she properly states this is due to the rareness of NAIT. While she should confuse ITP with NAIT and from what I read TTP does not generally affect her pregnancy, I think her general premise that if you do not have a known condition that can cause thrombocytopenia in a baby, the risk of NAIT is generally considered rare enough to not worry about. If the female asking the question had a known sibling with a rare homozygous platelet antigen, clearly her chances of inheriting it and chances for NAIT are higher statistically. That said, I am all for NAIT screening. Possibly genotyping is impractical presently, but a single antiplatelet screen around 24-26 weeks could catch many initial NAIT cases and allow time to treat, deliver early and avoid a lot of ICHs. The costs of this in larger scale is substantially less, and many parents may chose to pay it out-of-pocket if given the option and the information on the risk of NAIT. Many labs around the US can perform these antibody tests.
Also, I want to clarify that the use of Fetal Blood Sampling (FBS, a.k.a., PUBS or cordocentisis,) that you mention is considered outdated by many of the doctors involved in NAIT research around the world as non-invasive approaches have been preferred by some of them for many years, and even in the past couple years by Dr. James Bussel, et. al., who frequently used FBS in the past despite alarmingly high complication rates. Feel free to visit the www.naitparent.com NAIT Research page for many references, including this 2010 article by Vinograd and Bussel, currently available as of 3-9-2011 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2966900/?tool=pubmed
The 12-20 weeks treatment start date you mention refers to the Bussel, et. al., approach while some doctors start treatment as early as preconception and others later than 20 weeks. Also, recently Dr. Kaplan-Gouet, et. al., reported a significant correlation between antibody concentration and platelet counts, and has also reached out to Dr. Joanne Kwak-Kim in the US, who has used non-invasive testing for decades to help determine treatment effectiveness versus relying on the somewhat unreliable predictor of a previous child's condition. These non-invasive tests were used during my two children's treated NAIT pregnancies (one nearly a decade ago) with both achieving normal platelet counts at birth while using less than half the IVIG used by the doctors using the dates you mention. While not as widely used as the less analytical approaches, it is gaining traction with Dr. Kaplan recently emailing me, "We are looking of course for the best non-invasive therapy and other useful biomarkers to help for that purpose." We applaud these efforts and her willingness to want to collaborate with others who use them.
I also agree that it is wise to be well informed from a variety of reputable sources to help assure your doctor is well informed, but I would caution anyone not to consider the information provided by a Yahoo group, other forum or even our www.naitparent.com website “more accurate” than their doctor's without assuring the information can be substantiated by an evidence-based, scientific source. While groups are great for moral support and many NAIT parents are well informed, I used to belong to that Yahoo group and can recall numerous instances of inaccurate posts, including my own. Some louder voices in that Yahoo group also at least used to have a bias towards the Bussel, Berkowitz, et. al., approach, which has a history that includes over 6% serious complications (and in over 18% of pregnancies back in 2002), 20% still severely thrombocytopenic at birth and 3.8% with ICHs (based on their US data shown in the above linked article showing 10 ICHs in 265 pregnancies in the US studies.) All other studies cited in that article from other doctors resulted in 3 ICHs in 214 pregnancies, or 1.4% ICHs. While there are many factors involved in the results, achieving nearly 3 times more ICHs than others is possibly reason to not be biased towards those doctors, even if they are the ones you used and like. The facts are that nearly half of NAIT babies in subsequent affected pregnancies are severely thrombocytopenic by week 20, including ones with no ICH in a sibling. I am happy to provide a graph from the New England Journal of Medicine that makes this brutally clear in Dr. Bussel, et. al.'s past data. If these babies were born with an observed severely low platelet count, a hematologist would surely treat them with IVIG and/or a transfusion. Why on earth would you want to wait and not treat nearly have the babies experiencing similar counts inutero? The answer given in one article is that you might unnecessarily treat nearly half that they deem don't need it. Shouldn’t parents be the ones who deem what risk is appropriate? There are alternatives and some doctors do treat earlier than 20 weeks w/o a prior ICH to error more on the side of caution for ALL pregnancies. My bias admittedly lies with those who error more on the side of caution. Treatment was started at week 5 in our NAIT pregnancies, which is when the baby's heart starts beating. That at least has some rationale compared to choosing the 20 week date associated with RH sensitization, when NAIT sensitization is known to occur much earlier than RH sensitization. By treating early we were able to avoid a strong immune response and were able to stay at lower dosages given less frequently.
I think parents all support the desire for zero ICHs or severe thrombocytopenia as well as ways to effectively screen for and prevent NAIT in first pregnancies. Our doctors felt that goal could be achieved nearly 100% of the time and treated accordingly. Others like Bussel, et. al., seem to accept the 80% avoiding severe thrombocytopenia with a small percentage of ICHs better than treating more earlier. I have many dear NAIT parent friends in that Yahoo group, but I would suggest anyone joining it understand that if well intended members suggest they contact Dr. Bussel, that they also understand how well his study's results have compared statistically vis-a-vis to others. While a long contributer to NAIT research and surely a knowledgeable and caring doctor, results are also an important factor and parents looking for help should be informed of the average results to expect. Now that he appears to be adopting less-invasive approaches fostered by other doctors, hopefully the results will improve, and possibly some day that group will study treating more patients earlier. Until that time, I would think it wise to inform all NAIT parents to also investigate the possible advantages of earlier treatment available from other doctors.
If the principles of first primum non nocere (first do no harm) and early detection and treatment were followed, NAIT would have been using non-invasive, earlier treatment long ago. Hopefully an even better approach comes through innovation, but until that time, why not all work together to push for better methods instead of clinging to the past and doctors seemingly very slow to advance from it?
Thanks,
Kent
www.naitparent.com
Please feel free to contact us via the website for references or information to substantiate any of the above information. I am happy to help any NAIT parent and have corresponded with hundreds.
Also, I want to clarify that the use of Fetal Blood Sampling (FBS, a.k.a., PUBS or cordocentisis,) that you mention is considered outdated by many of the doctors involved in NAIT research around the world as non-invasive approaches have been preferred by some of them for many years, and even in the past couple years by Dr. James Bussel, et. al., who frequently used FBS in the past despite alarmingly high complication rates. Feel free to visit the www.naitparent.com NAIT Research page for many references, including this 2010 article by Vinograd and Bussel, currently available as of 3-9-2011 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2966900/?tool=pubmed
The 12-20 weeks treatment start date you mention refers to the Bussel, et. al., approach while some doctors start treatment as early as preconception and others later than 20 weeks. Also, recently Dr. Kaplan-Gouet, et. al., reported a significant correlation between antibody concentration and platelet counts, and has also reached out to Dr. Joanne Kwak-Kim in the US, who has used non-invasive testing for decades to help determine treatment effectiveness versus relying on the somewhat unreliable predictor of a previous child's condition. These non-invasive tests were used during my two children's treated NAIT pregnancies (one nearly a decade ago) with both achieving normal platelet counts at birth while using less than half the IVIG used by the doctors using the dates you mention. While not as widely used as the less analytical approaches, it is gaining traction with Dr. Kaplan recently emailing me, "We are looking of course for the best non-invasive therapy and other useful biomarkers to help for that purpose." We applaud these efforts and her willingness to want to collaborate with others who use them.
I also agree that it is wise to be well informed from a variety of reputable sources to help assure your doctor is well informed, but I would caution anyone not to consider the information provided by a Yahoo group, other forum or even our www.naitparent.com website “more accurate” than their doctor's without assuring the information can be substantiated by an evidence-based, scientific source. While groups are great for moral support and many NAIT parents are well informed, I used to belong to that Yahoo group and can recall numerous instances of inaccurate posts, including my own. Some louder voices in that Yahoo group also at least used to have a bias towards the Bussel, Berkowitz, et. al., approach, which has a history that includes over 6% serious complications (and in over 18% of pregnancies back in 2002), 20% still severely thrombocytopenic at birth and 3.8% with ICHs (based on their US data shown in the above linked article showing 10 ICHs in 265 pregnancies in the US studies.) All other studies cited in that article from other doctors resulted in 3 ICHs in 214 pregnancies, or 1.4% ICHs. While there are many factors involved in the results, achieving nearly 3 times more ICHs than others is possibly reason to not be biased towards those doctors, even if they are the ones you used and like. The facts are that nearly half of NAIT babies in subsequent affected pregnancies are severely thrombocytopenic by week 20, including ones with no ICH in a sibling. I am happy to provide a graph from the New England Journal of Medicine that makes this brutally clear in Dr. Bussel, et. al.'s past data. If these babies were born with an observed severely low platelet count, a hematologist would surely treat them with IVIG and/or a transfusion. Why on earth would you want to wait and not treat nearly have the babies experiencing similar counts inutero? The answer given in one article is that you might unnecessarily treat nearly half that they deem don't need it. Shouldn’t parents be the ones who deem what risk is appropriate? There are alternatives and some doctors do treat earlier than 20 weeks w/o a prior ICH to error more on the side of caution for ALL pregnancies. My bias admittedly lies with those who error more on the side of caution. Treatment was started at week 5 in our NAIT pregnancies, which is when the baby's heart starts beating. That at least has some rationale compared to choosing the 20 week date associated with RH sensitization, when NAIT sensitization is known to occur much earlier than RH sensitization. By treating early we were able to avoid a strong immune response and were able to stay at lower dosages given less frequently.
I think parents all support the desire for zero ICHs or severe thrombocytopenia as well as ways to effectively screen for and prevent NAIT in first pregnancies. Our doctors felt that goal could be achieved nearly 100% of the time and treated accordingly. Others like Bussel, et. al., seem to accept the 80% avoiding severe thrombocytopenia with a small percentage of ICHs better than treating more earlier. I have many dear NAIT parent friends in that Yahoo group, but I would suggest anyone joining it understand that if well intended members suggest they contact Dr. Bussel, that they also understand how well his study's results have compared statistically vis-a-vis to others. While a long contributer to NAIT research and surely a knowledgeable and caring doctor, results are also an important factor and parents looking for help should be informed of the average results to expect. Now that he appears to be adopting less-invasive approaches fostered by other doctors, hopefully the results will improve, and possibly some day that group will study treating more patients earlier. Until that time, I would think it wise to inform all NAIT parents to also investigate the possible advantages of earlier treatment available from other doctors.
If the principles of first primum non nocere (first do no harm) and early detection and treatment were followed, NAIT would have been using non-invasive, earlier treatment long ago. Hopefully an even better approach comes through innovation, but until that time, why not all work together to push for better methods instead of clinging to the past and doctors seemingly very slow to advance from it?
Thanks,
Kent
www.naitparent.com
Please feel free to contact us via the website for references or information to substantiate any of the above information. I am happy to help any NAIT parent and have corresponded with hundreds.
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