Help Improve the Standard of NAIT Treatment
Please Join Your Fellow NAIT Parents in Advocating:
Avoiding Precedures That Can Harm Your Baby - Earlier Treatment For All NAIT Babies - Saving NAIT Babies Is More Important Than Saving IVIG
Please join us in promoting and encouraging higher standards of care for NAIT babies and mothers! Together we are making a difference by sharing information and challenging our doctors to look beyond the practices of the past and to strive for higher platelet counts with fewer complications. Some doctors have attempted to establish the standard that approximately 80% of treated NAIT achieving a birth count above 50k1 along with a small percentage of ICHs is adequate, stating in another article that to treat earlier or more aggressively "needlessly overtreats the mother"2 While we agree a more measured approach is preferred that some doctors feel that non-invasive testing can provide3, we would rather error on the side of caution and overuse some IVIG to avoid more ICHs and time in the NICU than settle for the current standard of care that Dr. Bussel, Dr. Berkowitz, Dr. McFarland, et. al., deem adequate in the US. The late Dr. Alan Beer whom many considered the leading Reproductive Immunologist in the world, told us that he felt counts above 50k could be avoided nearly 100% of the time if treatment was started at the start of the pregnancy, and he had much experience with NAIT and decades of experience suppressing immune issues in pregnancy. Currently the Bussel, Berowitz, et. al., group requires a prior ICH to warrant earlier treatment in a NAIT pregnancy(1,2). We feel this is simply too steep a price for NAIT parents to pay to receive earlier treatment that can produce better results. Our hearts go out to those already who have paid that price, but we also ask that they respect our desire to lower the bar of entry for others so that higher standards can be established and a higher success rate can be achieved. We find the the extreme minority that feel the need to attack/bash our website and our desire for doctors to choose to treat for higher levels of success perplexing as they are working against the hundreds like us who simply want to see 100% avoidance of a severe count and ICH. How can we achieve more success right now? We have the means this very day and doctors have known how to achieve better results for many years. It is a simple matter of choosing a safer treatment path using the same drugs. Please see below for how we can all accomplish this by advocating that doctors, first do no harm by abandoning invasive procedures that can harm the baby, provide early treatment for all NAIT pregnancies, and put the highest priority on 100% avoidance of a severe count and worry less about possibly using more IVIG than they feel you deserve.
Primum non nocere (First Do No Harm)
While Fetal Blood Sampling (FBS, a.k.a., PUBS or cordocentesis) was once more commonly used to help assess risk in NAIT pregnancies, the data has been becoming clearer for many years that it does more harm than good, with the van den Akker, et. al., article in 2007 greatly helping close that chapter of serious complications and deaths caused by the procedure4. They accomplished 100% avoidance of an ICH and the only death was caused by FBS in their invasively managed control group. In the years to follow, a non-invasive treatment approach has rippled throughout Europe and the US. That study also mentioned the other risk of invasive procedures, saying, "Apart from the immediate risks of exsanguination or haematoma formation during FBS, a more long-term negative effect might be a boosting of antibodies especially with transplacental procedures." This risk has been known and understood for decades. Invasive procedures can act like a booster vaccination for a NAIT mother against her baby's foreign platelets. Combine that with the Bussel, Berkowitz, et. al.'s prior use of FBS to indicate whether a NAIT baby needed "salvage" treatment or not and it led to possible situations where a reasonably good FBS count lead the doctors and parents to assume no extra treatment was needed due to the good count. Unfortunately the procedure itself may have triggered the need for more aggressive treatment by stimulating a larger immune response that lowered the baby's platelet count. This helps explain why some were surprised by extremely low birth counts just weeks after a good FBS count. While FBS may make sense in cases where NAIT is diagnosed very late in the pregnancy or other circumstances, we embrace Dr. Bussel's updated stance on FBS and his statement in 2009 to, "Avoid fetal blood sampling whenever possible."5
Promote Early Treatment
The premise and benefits of early or preventative treatment has been know for centuries. I think most of us would steer a friend to a doctor treating cancer earlier and geting better results than one treating later getting worse results and some deaths, no matter how dedicated or caring that doctor was. Results matter with fatal diseases. We hear from many NAIT parents that their doctors are choosing to treat earlier to help achieve higher birth counts. We applaud and support these efforts. The Bussel, Berkowitz, et. al., group state, "We feel, therefore, that it is important to treat each woman with a regimen that is appropriate for her fetus -- not too little or too much."6 Since they publish quite frequently and somewhat accomplish establishing the standard for NAIT care for many doctors who do not have time to do their own research, the level of treatment success they choose to achieve is important. While we appreciate their efforts and information those doctors provide, we encourage all NAIT parents who share our goal of treating to avoid severely low counts 100% of the time to request these doctors choose to treat all NAIT pregnancies earlier. While they are free to choose 80% avoidance of a severe count as what seems appropriate to not use too much IVIG, we ask that you please tell your doctors who deal with them or tell them directly that NAIT parents want them to treat with a goal of 100% success. Of course costs matter, but we have found that insurance companies support treating to avoid more ICHs and NICU time. To be clear, there is no dispute with those doctors whether treating earlier will achieve better results. They just feel the price is too high. Since I once corresponded with a mom who lost her baby to an ICH in a treated pregnancy with IVIG started at 20 weeks as established by those doctors, I assure that is a very high price to pay for earlier treatment. I understand why the parents who are patients of these doctors and appreciate their efforts may be uncomfortable questioning their treatment targets, but we ask they at least respect those who want access to the benefits of earlier treatment. Below is a graph of FBS counts published by the Bussel, Berkowitz, et. al., group showing platelet counts by gestation and clearly showing counts can be severely low at or before they choose to initiate treatment. Many like us question how you could look at that graph and choose 20-24 weeks as the best time to start treatment at that time for the squares on that graph. They now choose 20 weeks, but why not join us in wanting them to treat earlier and put more dots above that 50k line? I realize some take offense to parents steering other NAIT parents away from doctors who choose to treat later and towards doctors who treat earlier, but many thank us for showing them the a safer treatment path. Any group, person or doctor recommending you accept the data points below as good enough for you are not serving you well. Excellent results are possible. We are happy to help provide information to help you persuade your doctor to treat earlier. Hopefully just the amount of dots below 50k in the graph below would be motivation enough.
Above graph copyright New England Journal of Medicine from the 1996 article Fetal Alloimmune Thrombocytopenia.
Save NAIT Babies -- Not IVIG
We feel strongly that the noninvasive testing that doctors like Dr. Kaplan in France or Dr. Kwak-Kim in the U.S. use to help gauge NAIT treatment's effectiveness can help determine when more IVIG and steriods may be needed to help prevent a low platelet count. In our treated pregnancies we used less than half of the IVIG what "standard" 20 week treatment starts used even though we started treatment at week five. If treating blindly without the guidance of noninvasive tests, we suggest early and aggressive treatment simply be used in all cases. Error on the side of caution and success for NAIT babies and not on the side of preserving IVIG. IVIG, while somewhat expensive, is relatively benign and your body produces it all the time. The risks of using it for several more weeks versus from 12 or 20 weeks on are neglible. Unless not insured, costs are generally not our primary concern as NAIT parents. Our concern is for what is safest for our babies. Parents do not want doctors to skimp on care due to perceived costs unless they participate in that decision.
The immune system and many diseases are somewhat like a fire. You can keep a small fire under control almost indefinitely by pouring small glasses of water on it periodically and may even extinguish it. If left unchecked for a long time allowing it to grow into a raging inferno, even buckets of water may not be able to control it. Early IVIG can be the key to which fire you fight with NAIT, so many argue why not simply pour buckets on it from the start? It is hard to argue with that. Help save more NAIT babies; not more IVIG by encouraging earlier treatment.
Lower the Threshold for Earlier Treatment
Doctors have been searching for a ways to determine how to know which NAIT mothers need earlier IVIG, more IVIG, or the addition of Prednisione for some time. We and others feel non-invasive tests like the TH1/TH2 cytokine ratio, antibody concentrations and even Natural Killer (NK) cell activity may be beneficial in helping guide that. It certainly has worked well for us and others, but while results matter, it would be nice to see more data on their effectiveness. The Bussel, Berkowitz, et. al., group have long used an ICH in a prior pregnancy as the key factor determining which pregnancies start treatment at 12 weeks or 20 weeks(1,2,5,6). While there is evidence that a severely low count or ICH can help indicate that subsequent pregnancies will require more aggressive treatment, with only 80% avoiding severely low counts using this approach, it leaves room for improvement. Many simply feel that having to run even a small risk of an ICH to receive earlier treatment is too high a price to pay for safer treatment. Does it make sense to start at 20 weeks following a NAIT baby born with an 8k count via c-section, but at 12 weeks for a NAIT baby following a rough vaginal delivery that resulted in an ICH and a platelet count of 28k? The difference may have simply been the method of delivery, yet two months of possibly crucial IVIG may be missed. This is not just Kent and Laura thinking the ICH requirement is setting the bar too high for earlier care -- we hear it from many others who correspond with us.
Conclusion
One of our goals in creating the NAIT Parent website was to help educate parents and their doctors on the benefits of early NAIT care. We find they grasp and flock to the data and the concept in droves. We hope you can help us by embracing treating earlier and promoting it to your NAIT friends and doctors.
On a lighter note, we realize some do not agree with what we advocate and oddly even have a few people who try to scare people away from the information we provide or say mean spirited things about us and our website. We feel life's too short and too many NAIT babies are dying to attack those trying to help other NAIT parents, but thought I'd share a bit of levity in all this. I saw were someone who dislikes our website posted on FB, "I would also never publicly "bash" a Dr because I disagreed w/ a trmt plan." It brought such a chuckle as just two sentences earlier in their paragraph they "bashed" doctors writing, "...unfortunately there are still some Drs that are still living in the dark ages and not only not offering IVIG but still telling women not to have more NAIT children as they will die." The irony of their hypocrisy brought a smile. :-) I guess it's OK to be critical of doctor's choices, decisions and information as long as they are not your or your friend's doctor! I would be critical of my own mother's choice if she were a late treating doctor writing numerous articles that other doctors would follow and put more NAIT babies at risk. Sorry mom, but you raised me to speak out for what is right. :-)
Lastly, to be clear we feel we must used named research to provide credible information. People who write articles put their names on them for a reason, and disagreeing with their choices or interpretation is not a personal attack, nor meant to be. We appreciate all doctors dedication and desire to help patients even when we disagree with their opinions, whether it being telling NAIT parents to have no more children, not use IVIG, start IVIG at 20 weeks or perform a bunch of FBSs. While we also put our names on these pages to communicate our interpretations, we similary ask you not personally attack us behind our backs in groups that include our friends, but instead have the courage to address your concerns with us directly. We welcome feedback and open debate as well as the exchange if ideas peformed in a civil manner.
References
1. Antenatal treatment of fetal alloimmune thrombocytopenia: a current perspective. Haematologica. 2010 Nov;95(11):1921-6. Cheryl A. Vinograd and James B. Bussel. Graph with 80% overal results referenced shown in the chart below:
2. Parallel Randomized Trials of Risk-Based Therapy for Fetal Alloimmune Thrombocytopenia. Obstetrics & Gynecology: January 2006 - Volume 107 - Issue 1 - pp 91-96. Berkowitz, Richard L. MD; Kolb, E Anders; McFarland, Janice G. MD; Wissert, Megan RN; Primani, Andrea; Lesser, Martin; Bussel, James B. MD.
3. Prediction of the fetal status in noninvasive management of alloimmune thrombocytopenia. Blood. 2011 Mar 17;117(11):3209-13. Epub 2011 Jan 14. Bertrand G, Drame M, Martageix C, Kaplan C.
4. Noninvasive antenatal management of fetal and neonatal alloimmune thrombocytopenia: safe and effective. BJOG. 2007 Apr;114(4):469-73. Epub 2007 Feb 19. van den Akker ES, Oepkes D, Lopriore E, Brand A, Kanhai HH.
5. Diagnosis and management of the fetus and neonate with alloimmune thrombocytopenia. Journal of Thrombosis and Haemostasis, 7 (Suppl. 1): 253--257. J. Bussel.
6. Alloimmune thrombocytopenia: State of the art 2006. Am J Obstet Gynecol. 2006 Oct;195(4):907-13. Epub 2006 Jul 26. Berkowitz RL, Bussel JB, McFarland JG.
NOTE and DISCLAIMER: My wife and I are not doctors. We are just parents who hope to share information we learned from reading and consulting with many wonderful doctors. The information, opinions, and reference materials contained in this site are intended solely for the informational purposes of the reader and should not be considered medical advice and is not intended to replace consultation with a qualified medical professional. This site is only intended to possibly help you when you are discussing NAIT with your own physician(s). |