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Anyone have 2 or more children with neonatal alloimmune thrombocytopenia Page 2 of 3
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Hi, thanks so much for writing your story I would like to know how early you started your ultrasounds and also how early you started your IVIg treatments? Did you now work? I understand that the IVIg takes 12 hours to infuse. Thanks so much this is so helpful. Also I am having difficuly researching treatment with a second pregnancy can anyone give my any website? thanks
nurstam last decade
hi, wondering how your ultrasound went and if you have started treatment. Hope it is all going well. I just went to the doctors to map out our strategy for having a second child. Scared but think I'll be doing it again. Any info will be helpful. thanks
nurstam last decade
It's very interesting, and reassuring to an extent, to hear of others in similar circumstances to mine. Before finally having my daughter, now 4yrs old, I suffered from 3 miscarriages, which all occured before 12 weeks and I was advised were not as a result of NAIT.
My husband and I are about to try again and I have to say that I am rather nervous.
It was discovered at 36wks that there was a problem with my pregnancy, but not until after my daughter was born that is was NAIT. She suffered a brain haemorrhage and as a result has mild CP and is visually impaired. In any future pregnancies I have been told that I will commence treatment at 18weeks as there is 100% chance of re-occurance.
My husband and I are about to try again and I have to say that I am rather nervous.
It was discovered at 36wks that there was a problem with my pregnancy, but not until after my daughter was born that is was NAIT. She suffered a brain haemorrhage and as a result has mild CP and is visually impaired. In any future pregnancies I have been told that I will commence treatment at 18weeks as there is 100% chance of re-occurance.
tkc2000 last decade
Hi my son has mild cp also and as a result has right sided weakness. He has two eye surgeries to try to correct his eyes from turning in and then the one eye is rather all over. No more surgeries for now. How visually impaired is your daughter? What treatment have you been advised to have? There is a NAIT club on yahoo. There are 32 members who could answer any of your questions.
jcove last decade
Hi. I look after women with NAIT. If you do a GOOGLE search for neonatal alloimmune thrombocytopenia you will come up with a lot of hits.
There is a wide range of opinions on how to treat and usually depends on where you live and your past history.
I have met women with very normal outcomes and women with terrible obstetric histories.
Most importantly you need to find a good maternal fetal medicine specialist or perinatologist with experience in this condition and make a plan for your pregnancy.
Carol
There is a wide range of opinions on how to treat and usually depends on where you live and your past history.
I have met women with very normal outcomes and women with terrible obstetric histories.
Most importantly you need to find a good maternal fetal medicine specialist or perinatologist with experience in this condition and make a plan for your pregnancy.
Carol
cportm last decade
I am also a mother who lost two children to this. I am now pregnant with my third. I have done a lot of research and I am so thankful to know that there are others out there with success stories.
Jennifer last decade
hi, i suffer from severe NAIT. i have had two children, my first beautiful son died at birth at 32 weeks undiagnosed until it was too late. my second son was born with two grade 1 bleeds in his brain at 30 weeks after IV intragam from 12 weeks, and 10 platelet transfusions in utereo, to which i made antibodies against donor platelets. i have two negative antibodies. i can never have another child. id really like to talk to other mums that have NAIT - its a very lonely thing to have. sarah.
janedoe1 last decade
Hi,
just curious, you all don't seem to be looking for help here even though you seem to have terrible problems.
What's the deal?
salty
just curious, you all don't seem to be looking for help here even though you seem to have terrible problems.
What's the deal?
salty
saltOftheEarth last decade
Hi,
You all dont seem to be looking for homeopathic solution to terrible problems, is that correct?
Just curious,
Salty
You all dont seem to be looking for homeopathic solution to terrible problems, is that correct?
Just curious,
Salty
saltOftheEarth last decade
Salty fill us in.... is their one? I look for all information and compile everything to make informed decisions on my health care using both conventional and unconventional. If you know of something that could help fill us all in.....
ourmiraclechris last decade
Hi
I have 2 girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count, but after developing antibodies in my 2nd pregnancy my youngest was born with Severe Thrumbocytopenia. She had a platelet count of 42 and managed to recover her platelet count to 300 when she was 10 days old. I have now been warned that any future Children will be as badly affected or even worse.
We have made the decision not to have any more children and are very lucky to have 2 healthy little girls.
I have 2 girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count, but after developing antibodies in my 2nd pregnancy my youngest was born with Severe Thrumbocytopenia. She had a platelet count of 42 and managed to recover her platelet count to 300 when she was 10 days old. I have now been warned that any future Children will be as badly affected or even worse.
We have made the decision not to have any more children and are very lucky to have 2 healthy little girls.
LIVI1102 last decade
Hi
I have 2 girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count, but after developing antibodies in my 2nd pregnancy my youngest was born with Severe Thrumbocytopenia. She had a platelet count of 42 and managed to recover her platelet count to 300 when she was 10 days old. I have now been warned that any future Children will be as badly affected or even worse.
We have made the decision not to have any more children and are very lucky to have 2 healthy little girls.
I have 2 girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count, but after developing antibodies in my 2nd pregnancy my youngest was born with Severe Thrumbocytopenia. She had a platelet count of 42 and managed to recover her platelet count to 300 when she was 10 days old. I have now been warned that any future Children will be as badly affected or even worse.
We have made the decision not to have any more children and are very lucky to have 2 healthy little girls.
LIVI1102 last decade
Hi
I have 2 little girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count but during my 2nd pregnancy I developed antibodies and my youngest girl was born with severe thrumbocytopenia. She had a platelet count of just 42 and without any intervention made her platelet count upto 300 by the time she was 10 days old.
We have been told future children will be as badly affected if not worse. We have made the decision not to have any more children and feel extremely lucky to have 2 healthy little girls.
I have 2 little girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count but during my 2nd pregnancy I developed antibodies and my youngest girl was born with severe thrumbocytopenia. She had a platelet count of just 42 and without any intervention made her platelet count upto 300 by the time she was 10 days old.
We have been told future children will be as badly affected if not worse. We have made the decision not to have any more children and feel extremely lucky to have 2 healthy little girls.
LIVI1102 last decade
Hi
I have 2 little girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count but during my 2nd pregnancy I developed antibodies and my youngest girl was born with severe thrumbocytopenia. She had a platelet count of just 42 and without any intervention made her platelet count upto 300 by the time she was 10 days old.
We have been told future children will be as badly affected if not worse. We have made the decision not to have any more children and feel extremely lucky to have 2 healthy little girls.
I have 2 little girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count but during my 2nd pregnancy I developed antibodies and my youngest girl was born with severe thrumbocytopenia. She had a platelet count of just 42 and without any intervention made her platelet count upto 300 by the time she was 10 days old.
We have been told future children will be as badly affected if not worse. We have made the decision not to have any more children and feel extremely lucky to have 2 healthy little girls.
LIVI1102 last decade
Hi
I have 2 little girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count but during my 2nd pregnancy I developed antibodies and my youngest girl was born with severe thrumbocytopenia. She had a platelet count of just 42 and without any intervention made her platelet count upto 300 by the time she was 10 days old.
We have been told future children will be as badly affected if not worse. We have made the decision not to have any more children and feel extremely lucky to have 2 healthy little girls.
I have 2 little girls the eldest 3 and the youngest 18 months. My eldest was born with a normal platelet count but during my 2nd pregnancy I developed antibodies and my youngest girl was born with severe thrumbocytopenia. She had a platelet count of just 42 and without any intervention made her platelet count upto 300 by the time she was 10 days old.
We have been told future children will be as badly affected if not worse. We have made the decision not to have any more children and feel extremely lucky to have 2 healthy little girls.
LIVI1102 last decade
My son was born 10 weeks early with no warning except for decrease fetal movement. While in the NICU, his platelet count dropped and it was recommended that my husband and I get some testing done to check for NAIT. After the testing, my huband is HPA 2a/2b and I am HPA 2a/2a. I am confused as to what this means. Our son does not have NAIT but it was recommended that we get counseling before the next as there could be a chance of problems -- question: can anyone help me to figure this stuff out. What is our risk? Because of the incompatibility - what should we do? Thanks.
dveltman last decade
My husband has HPA 2A/2B and I am 2a/2a -- what does this mean? Our son was born 10 weekds early due to decrease fetal movement and then a dropped platelet count. He does not have NAIT but what are the risks for the next one? We were told to get counseling before trying again as there could be a significant risk -- like what? Help me sort this out please.. . . thanks.
dveltman last decade
My husband has HPA 2A/2B and I am 2a/2a -- what does this mean? Our son was born 10 weekds early due to decrease fetal movement and then a dropped platelet count. He does not have NAIT but what are the risks for the next one? We were told to get counseling before trying again as there could be a significant risk -- like what? Help me sort this out please.. . . thanks.
dveltman last decade
Hi to you all! I am new to this forum, and I am excited to see that I am not alone in this world. I have not read all of your post yet, but to all of those who have children with NAIT, I relate. I do have 2 children who were both born with NAIT. My son's birth went off without a hitch, but we soon found out that there was something wrong. No one, not even the doctors, knew why he had the platlet problem. They told us that it was a freak thing and it would not happen again. He recovered, then three years later, my husban and I tried to have another baby. It was then that we were sent to a specialist and found out that our daughter was going to be born with the same thing. We got involved in an experimental study out of NY. I received IGG infusions every week and was put on steroids. They monitored both of us, but at 30 weeks of gestation I developed an allergic reaction to the IGG and could not get anymore. At 34 weeks, a PUBS was done. My daughter began to hemoriage, and was born via C section. She also recovered. My children are now 6 and 3. Due to the NAIT, the doctors recommended that I have my tubes tied, in which that was done. Now three years later, I am beginning to regret that decision. I have began to research NAIT, to find out if more things have been done to help women have multiple children who have had NAIT. Can any of you help? Or point me in the right direction? Would any of you try to have another child after having two with NAIT? I have already been blessed with 2 miracles, is it worth chancing fate again? Please help!
atjcam last decade
Hi all. I am writing to offer hope. I have 3 children ALL with neonatal alloimmune thrombocytopenia. 1st son was born in 1993 shoulder dystocia so they had to snap his little arm and hank him out in a hurry. Besides the broken arm he had terrible bruising, broken blood vessels in the eye and I was raced to donate platelets at the Red Cross as his count was so low and they needed the platelets for transfusion. Was informed of platelet antibody and that having any more kids would be deemed "high risk", if I chose to even have any more kids.
I am also insulin dependant diabetic and was already classified as high risk, so what gives? How could it get any more high risk?
2nd child 1996 was treated with intragam gamma globulin by IV every week from 20 weeks of pregnancy. Also had 2 rounds of in-utero platelet transfusions (my husband fainted while watching this procedure). Child was born by caesarian without a hitch mind you 5 weeks early for unrelated reasons. Made the newspapers and television after his birth: Miracle baby born due to the in-utero platelet transfusions which had never been done in this city.
3rd baby girl born in 2000 and wow were they happy to see me at the hospital again! Youre back! they cried couldnt believe I was going though all this again. Basically the same treatment however this time I developed preeclampsia and again the baby was delivered by caesarian 5 weeks early.
The platelet levels of my children all increased after birth and after routine tests for a few weeks, platelet count returned to normal range.
Today they are normal kids with no problems other than middle boy has mild autism and asthma completely unrelated to the pregnancy or the NAIT.
As this is on a homeopathy forum, I am not sure what sort of homeopathic treatment can help other than perhaps helping people through the emotional aspects of this condition. Id consult a homeopath in person if I were to become pregnant again. The risks of brain hemorrhage and losing the baby are so great, that it is bound to call on your inner resources to get through the pregnancy.
It is such a rare condition that not a lot of research had been done (when I had my kids) but it isnt the end of the world.
I am also insulin dependant diabetic and was already classified as high risk, so what gives? How could it get any more high risk?
2nd child 1996 was treated with intragam gamma globulin by IV every week from 20 weeks of pregnancy. Also had 2 rounds of in-utero platelet transfusions (my husband fainted while watching this procedure). Child was born by caesarian without a hitch mind you 5 weeks early for unrelated reasons. Made the newspapers and television after his birth: Miracle baby born due to the in-utero platelet transfusions which had never been done in this city.
3rd baby girl born in 2000 and wow were they happy to see me at the hospital again! Youre back! they cried couldnt believe I was going though all this again. Basically the same treatment however this time I developed preeclampsia and again the baby was delivered by caesarian 5 weeks early.
The platelet levels of my children all increased after birth and after routine tests for a few weeks, platelet count returned to normal range.
Today they are normal kids with no problems other than middle boy has mild autism and asthma completely unrelated to the pregnancy or the NAIT.
As this is on a homeopathy forum, I am not sure what sort of homeopathic treatment can help other than perhaps helping people through the emotional aspects of this condition. Id consult a homeopath in person if I were to become pregnant again. The risks of brain hemorrhage and losing the baby are so great, that it is bound to call on your inner resources to get through the pregnancy.
It is such a rare condition that not a lot of research had been done (when I had my kids) but it isnt the end of the world.
zuzu_jane last decade
Good morning, Could you please advise if there are any NAIT support groups or dedicated web sites for this disorder. We need to find as much information on the subject and discuss with other people their experiences relative to the treatments available.
Kind Regards
Aussies
Kind Regards
Aussies
Aussies last decade
Good morning;
It would be greatly appreciated if you could advise if there are any dedicated NAIT websites or support groups for this disorder.
Kind Regards
Aussies
It would be greatly appreciated if you could advise if there are any dedicated NAIT websites or support groups for this disorder.
Kind Regards
Aussies
Aussies last decade
I am a student was looking at info for NAITP and found this site. I just wanted to try and explain the antigen/antibody thing for 'dveltman'. If you are HPA2a/2a and your partner is HPA2a/2b, when you concieve, your child take one allele from you and one from your partner. So your baby could take 2a from you and 2a from your partner and be 2a/2a as you are. Or it caould have 2a from you and 2b from your partner and be 2a/2b as he is. This is where you have a problem. Because you do not have 2b, your body makes antibodies to the 2b on your baby's platelets which can cross the placenta and destroy them, causing low platelets which means the baby's blood clotting is reduced and can lead to haemorrhaging. If the father is 2b/2b then every child you have will be 2a/2b and this will happen. It is similar to haemolytic disease of the newborn which occurs due to different Rh status of mum and baby and affects the red blood cells. However, because of antenatal screening and preventative treatment, sensitisation at first pregnancy can be avoided. Screening for NAITP however is not deemed cost effective though its possible in known cases. Donor platelet panels are set up for HPA1a and HPA5b negative platelets as these are commonest antigens to cause probs. Hope that helps. If you don't understand you really should ask your consultant to explain it to you or ask for genetic counselling.
orangegirl7 last decade
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