Anyone have 2 or more children with neonatal alloimmune thrombocytopenia _{Page 3 of 3}

I started a support group 3 years ago. Please click on my profile for the link since we are not allowed to post links in the replies. We have over 80 members and we suppoorteach other and exchange info. The members are from all over the world.

Hi everyone. I am excited to have stumbled upon this site, but have to admit I have now become even more nervous about my current pregnancy. My last son was born in Jan. of 2003 and the day after he was born was diagnosed with NAIT. My husband and I carefully considered having another child and with the help of a genetic specialist here in town and also one at UCSF, we were told there are ways to treat this. Both mine and my husband's platelets were typed and it was determined that every one of our children will be affected by this. See, I have what they tell me is PLA 2/PLA 2 and he has PLA 1/PLA 1 which means that all my body knows is the 2, so when his 1 comes into my body my body attacks it, and attacks the babies platelets. It was a long time before we even understood what all of this meant or even how it happened. I am currently 22 weeks pregnant and have been receiving infusions since 12 weeks. My infusions only take about 5 hours once a week, I receive a medication called Gamunex (not sure about spelling). My doctor is considering doing a PUBS at about 26 weeks to check the platelet level. She has said that we will more than likely do a delivery by C-section at about 36 weeks. She also said that if the levels test to be considered "healthy" by her that she would not mind letting me have a vaginal birth, but I am more comfortable with a C-section. I have been warned about the risk of bleeding in the brain caused by the pressure on the head during a vaginal birth. I have to be honest, my doctor warned me of the risk, but after reading your posts, I am even more concerned. Many people do not realize how lucky they are to have healthy babies. I was just like everyone else I guess you could say, thought I was going to go to the hospital and have my baby and come home. Well, it doesn't always work like that. My baby was in the NICU for 6 days and had 1 annonymous platelet tranfusion from someone who came into the blood bank. That tranfusion only brought the platelets up by about 10 or 20 thousand or so (he was down to 10,000). Then his doctor decided that he needed my platelets. She said that my platelets were the "super platelets". She was right. After getting my platelets, he skyrocketed to almost 300,000. Even though they did go down a little after that, he has been fine ever since. They monitored him for about 3 months, then said he was fine and that it would never come back again. I don't know if any of this will help anyone here, but I am glad that I found you all. It's true that you feel as if you are the only one out there with this problem. It's also hard when your friends are having healthy babies without complications. Although you are happy for them, you can't help but think why does this have to happen to me?

I have just given birth to my second child with NAIT. Both of my children had very low platlet counts when they were born, the first had a count of 3, the second had a count of 9,and she had to be delivered 7 weeks early because we knew what was going on second time around,thankfully they are both very normal and healthy children and after reading the posts on this website I realise how luckey I am. My thoughts go out to everyone who has suffered berivment through this condition.I am only 24 and doctors have highley recommended that I be stererlized.I dont know any one else with this condition and when talking to friends and family about it I feel that they dont realize how serious it it also they dont really know what im talking about,would love to talk to others about it,I live in Yorkshire and when I had my second I was told they had not had a case like me in 10 years

yahoo

yahoo

sorry for the yahoo

Hi! Feel very emotional about finding this website. Seven years ago after a normal pregnancy my boy was born covered in purple spots. After 24 hours of nagging them, the hospital tested his blood to find a platelet count of 5.Life became a bit of a blur. He had several transfusions over the next ten weeks and looking back we never truly knew what was going on. The hospital just kept saying it must of been from an infection.At the time both my husband and i had blood tests but no results were ever given. After ten weeks my son had a platelet count of 300 and he was discharged. The consultant said not too worry as it was a one off. Three years later i gave birth to my daughter after another "normal " pregnancy. Thoughout the pregnancy i voiced my concerns that it would happen again, but my midwife and docter just assummed i was being an over dramatic mother. As soon as she was born we saw the purple spots and insisted on a blood test. This time the count was only 4. The next day in special care her consultant informed me that she had nait and that when my son was born they had unfortunatley filed my records without informing me of my platelet antibodies and also the medical card that i should carry. My daughter took alot longer to recover. She needed 2-3 transfusions a week for the first month. It took just over three months before she was discharged with a count of 258. Part of me was so angry that i wasn't aware of my condition, but another part is so glad, because if i had of known then i don't think i would have ever gone through with the pregnancy. I feel so blessed that my babies survived this and my heart goes out to anyone who has experienced nait.

I am so glad to have found this site. Since my son was born with NAIT in 2001 i have been searching for sites to find someone who has the same problem as myself and my husband. We both carry the antibody HPA1a, which destroys the platlets during pregnacy and birth. My 1st son was born with a platlet count of 7, i nearly lost him during delivery, the doctors were unaware of my condition at this time and due to a difficult delivery wanted to carry out a vontoose. If this had takin place my son may have died through a massive brain hamorrage. I managed to deliver him myself, but he was extremley brusied. He was taken to special care where they transfused him with platlets. 2.5yrs on i was pregnant with my 2nd son. Aware of my condition they prepared me for the worst and told me that this child may not survive despite having weekly immunoglobulin treatment. In my 30th week i had blood taken from the cord, my babies platlet count was 11, despite all the treatment i had recieved the doctors still were not happy. They doubled the dose of IVIG, and i ended up having 3 interuterine transfuions prior to my son being born by casearian section at 35wks. His platlet count was a sucessful 258 on delivery,and only dropped as low as 154. He did not need any post birth transfusions and his platlet count increased to 350 after 4days. I broke my heart when i knew how lucky i was to have 2 beautiful healthy boys. I only hope that research into this unknown devestating condition continues and that there will be more hope for people like ourselves.

Hi I have 2 children born with alloimmune thrombocytopenia. Both are fine now. With my 1st child, I had no idea. With my 2nd child, I was on IVIG. It really made a difference in her platelete count. If you would like more info feel free to contact me . God Bless .

My husband and I have two children. We didn't know about NAIT until our daughter was born bruised from head to toe. She was well by the time she was four weeks old. We were warned not to have more children, but oops! When I found out I was pregnant, I urgently tried to find out what treatments were available. I was lucky that the military doctors referred me to a university hospital with much expertise with NAIT. I started IVIG and weekly Level II ultrasounds at 17 weeks. I had a third term miscarriage in a previous marriage, but never got a reason why. After our second child was born with only 6,000 platelets (and that's after having the benefit of my 18 IVIG treatments), the doctor is convinced that this was my THIRD child with NAIT. The odds are incredible that I would have a common incompatibility with two different husbands, but it gives me peace to know why (probably), 8 years later, I lost my firstborn. The IVIG treatments are crucial, and I didn't have the baby's cord blood tested in vitro, because my husband and I had blood tests to confirm the incompatibility. We did not want to undergo such an invasive procedure if there were other tests to give conclusive evidence that our son would have the condition. The blood tests are only conclusive if they prove the male is monozygous (whatever that means!!). I am so sorry for all the losses. Nothing is worse than losing a child.

WOW - I cannot believe I just stumbled onto this site!! 18 years ago I delivered a perfectly healthy baby boy, still thriving today, never a problem. 16.5 years ago I delivered twin boys one with platelet count of 10,000 and extremely anemic, the second the recipient of a twin to twin transfusion and platelet count of 15,000 who died 18 hours later of a massive ICH. Believe it - or not - I am now 40, with a new hubby and considering another pregnancy. I have done tons of research on the web and even called the Puget Sound Blood Center where they froze my platelets 16+ years ago for study. I just called them to see if I could get some info and left my name on the voice message....I got a call back from a woman who actually remembered me!! That pretty much speaks volumes as to how RARE this is. What I am learning is at least they know what it is now, they sure had NO clue 16+ years ago. I feel confident that there are now 'tools' that weren't an option before, yet still a risk. My heart goes out to all of you that have had to endure this, and my congratulations to all of you have healthy happy babes in the end! My email address is posted on my profile, would love to chat with anyone on this subject ;o)

Hi all ~ I am a Mom of 3 children. My oldest is now 10 and spent 10 days at UVA after she was born. There is no routine test for NAIT or ATP, so until the petechie were noticed and a platelet count was done, we had absolutely no idea. About 10 months later I learned I was again pregnant, and I cried my eyes out. My husband and I have a 50/50 chance that our children would be "normal" or like me, which means there would be no pregnancy worries because we're compatible. No amnio was done until I was 7 months along, and in the meantime I was doing weekly infusions of ImmunoGlobulin, which made me miserable. The amnio should have been done at 12 weeks, and we were surprised to discover that our second child also has the negative antigen, which made the rest of my pregnancy "normal" but also breaks my heart, as she is a girl and will have to deal with this in her own pregnancies when she grows up. To our absolute shock & surprise, a little over 2 years later I learned I was once again pregnant. This time the docs even made me sign a waiver that I would not hold them responsible for any problems caused by the NAIT ~ I guess in our "Sue Everyone for Millions" society, they felt they had to protect themselves. My son was a scheduled c-section at 36 weeks, and although his platelets were only 38K, he only needed one infusion of platelets and was released from the NICU 2 days later. During that c-section I also had my tubes tied, I felt we had tempted fate too often.

My 2nd child, "Niki", says she wants to be an OB/GYN when she grows up (she's 8) so that she can find a cure to help herself & other women & babies.

If you have this condition, please make your sisters & female cousins aware of it so that they can ask their own OB/GYN to run the necessary tests, as it's a possibility that they also carry the negative antigen.

Crystal in VA

MY WIFE AND I HAD 2 CHILDREN our first child died and our second one is severely handicapped and the doctors screwed up big time email me i will discuss it with you.

Please join us and other affected by nait at our suuport group on yahoo. click my profile for the link. or remove spaces http:// health.groups .yahoo. com/ group/NAIT/

My son was born in December with NAIT. We were lucky his platelets were low but not low enough to need any transfusions or anything. He just rebounded as the days went by.

My husband and I are discussing future children and just wanted some more insights. I can't seem to find that yahoo group you guys were talking about in 2005, are you still out there?

yes we are still here click on my username and you will find the link to the yahoo group or type in http : // health. groups. yahoo. com/group/NAIT/
without the spaces. I just had my second healthy child after my first son was born with severe thrombocytopenia.

Hello yes I do... please respond becuase we can talk about it in depth. I have 3 daughters and a son on the way....

I HAVE 3 CHILDREN WITH NAIT!
Hello everyone first I would like to please ask for your forgiveness I have never known there was such a huge outpour of NAIT effect all over the world....I feel selfish but blessed at the same time and hope that whatever questions need to be answered I would be more than happy to answer or help in any way I possibly can! My name is Line, and I have three children born with NAIT: Lavaka, 5 years, Lesieli, 4 year, and Zeniff two!My children are healthy and well but we had a trial of faith and alot of rollercoaster rides. My eldest son at a couple of months came down with a fever...after four days my husband and I took him into the E>R and after given a I.V his right arm turned purple bruisng his lttle body instantly! He was quickly rushed to Loma Linda a wonderful hospital were many test were done after many tests he was given a transfusion and was stabilized after two doses.After three weeks of recovery and antibiotics we were discharged with no answers and no diagnoses.We had check up after check up but noone could tell us what was wrong...NAIT was a possible diagnoses but no for sure answers! Four months later I was pregnant everything was normal and we didnt think anything when came time to deliever I had went in with strong contractions two weeks past my due date and after complications they took me and performed a emergency C-Section. After twenty four hours I spoke with my Dr. and had voiced my concern with my first child, if possible they could check my daughter for any signs of low platelets...sure enough she was at 9,000 and going down drastically she was rushed to the NICU and they perfomed a transfusion after two dosages she was stable and was released three weeks later! My third child they finally told me tht I would be seeing a high risk perntologists so I began the visit the sent us out also to a wonder Dr. at USC who specifically specialized in NAIT....I was then at twenty weeks put on IVIG treatments... spent thanksgivng, my sons bday oh it felt like I lived there..until I was rushed to the hospital with fluid hypertension I had suffered a Acute Reinal Kidney Failure at 23 yrs old!So thru pray and answer we decded no more IVIG treatments. My Dr. at USC did a surgery emniotosis and the babys platelets were normal. So he planned for a delivery at 32 weeks and yet it was early my son was eght pounds almost nine..lol!He also was taked straight to NICU and he took three doses of platelets and had a wait on him to find him a donor which was then miraculouly found and he was well! My three miracles of product of Faith and Prayer I know my story is different from alot of these cases in which I admire! But I truly believe my miracles were none other the product of our Saviour and his power....and for that I am truly grateful!

Please visit the yahoo support group you can find it in my profile or just scroll up and take the spaces out of my last post. There have been many mom's who have had NAIT who also had other things happen while pregnant. We are collecting all the info we can to show to doctors and see if other issues may be related to NAIT like PreEclampsia or Hellp syndrome. Any info we all share helps greatly :)

Yes, we have 3 healthy NAIT children, and know many other NAIT parents with three or more. Following a 20k platelet count in our firstborn, we were able to achieve NORMAL platelet counts in our two treated NAIT pregnancies. The treatments definitely can work, but research continues to indicate that early and non-invasive approaches work better. Our doctors and others do not consider 20 weeks early enough to achieve the best results on a more consistent basis (as research shows many NAIT babies are severely affected by this time, and some have died from NAIT as early as 16 weeks.) If you are a NAIT parent wanting more children, please know there is much hope for a completely healthy outcome.

We have had the pleasure of corresponding with hundreds of NAIT parents, and there are so many inspiring stories and babies! We have also heard of loss at times, so that is why we continue to advocate NAIT screening for pregnancies, and also better treatment for NAIT pregnancies. We see no reason to settle for a treatment plan that has a history of having a small percentage of bleeds or losses and a fair percentage of extremely low counts just because a couple of doctors who came up with the plan deem it good enough. With earlier treatment, our doctors said they felt they could avoid non-severe counts nearly 100% of the time, so that seems worth a second look, IMO. I am pressed to think of any potentially fatal diseases where doctors would not prefer to treat it prior to it possibly becoming severe, yet with NAIT, a few 'experts' chose to start where about half may be severely affected citing that if they started all earlier, many would receive unnecessary extra amounts of treatment. Since the treatments are considered quite safe, we and many other NAIT parents find erroring more on the side of caution well worth eliminating more of the serious risk.

There are doctors treating earlier and less invasively than others, so I encourage you to consider the results and methods of approaches and doctors being recommended by our website, this post, or some other online group. Parents deserve to know if the doctor or treatment approach a group or website recommends has any history or or known undesirable results or complications.

I have been reading much of the NAIT research since 2000 and am happy to share information with others or answer questions. We reference much of the research and more on our NAIT Parent (naitparent dot com) website's research page, and are happy to provide whatever information and help we can to NAIT parents who contact us through the website or via this forum. We also welcome new information or input. Our goal and hope is to help NAIT parents find the safest treatment they can based on data and science. I no longer personally belong to or support the Yahoo group mentioned in earlier posts, so any of our NAIT parent friends from that group wanting updated information or just wanting to say hi, Laura and I would love to hear from you.

Thanks,
Kent

PS - NAIT parents, make sure your know all of the facts if your doctor recommends an invasive procedure called a PUBS or FBS (Fetal Blood Sampling) as the risks are thought to be higher with NAIT than the general population statics they may find and quote, and doctors around the world are trending away from this procedure with NAIT. Besides the direct risks and sometimes causing premature delivery, it can also trigger a stronger immune response by exposing the mom to the baby's platelets. This seemingly good idea has had unacceptably high complication rates associated with it for over a decade, yet some doctors have continued to use it. If circumstances dictate it makes sense to have a PUBS/FBS, much of the risk depends on the skill/experience of the doctor with this procedure, so it may be worth traveling to a pro.