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High-Risk Pregnancy
NAIT Pregnancy
So, I searched and couldn't find anyone else with NAIT, so I thought I'd throw in here.
Five years ago our first daughter was born with a stroke and bruising all over her body due to having less than 5% of the normal platelet count for a newborn (clotting factor). After numerous blood tests, they found that I have a rare negative platelet type, and my hubby's is positive, so, like Rh factors, my body was rejecting the baby throughout the pregnancy. This condition is called Neonatal Alloimune Thrombocytopenia.
We assumed that this meant we could have no more kids, but once we moved out here to California, we found a specialist, and with twice a week treatments with IVIG, we are now 18 weeks pregnant!
The treatment isn't fool-proof, I have a cordocentesis in two weeks to check on the baby's platelet count, and if it's low, the baby will get a platelet transfusion and they'll start me on steroids, too, but we're hoping for the best.
I have the big U/S on Wednesday and we're still a little undecided on whether we want to know the gender. We kind of enjoy the surprise, but at the same time, there's so much uncertainty with this pregnancy, that I think we could indulge ourselves (and stop having to pick out two names...). Maybe the baby will make the decision for us and keep its legs crossed for the whole thing.
Thanks for listening!
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Re: NAIT Pregnancy
What a great story! I have never heard of that but I am so happy that you were able to get pregnant again and hope for the best for you guys!!!
How is your older child now?
She's doing great. She has cerebral palsy, in that she has increased tone in her legs, so she wants to walk on her toes. She wears braces and gets botox injections and physical therapy to help her with that. And the stroke also affected her vision, so although she can see, she's not got the full vision of a normally sighted child. Because of these things, she's got some developmental delays.
She's in Special Day Kindergarten this year, but I'm hoping that we can overcome the issues that are keeping her there and move her into regular kindergarten or 1st grade next year, with an aide.
We call her our miracle baby. When we first saw a developmental pediatrician, he was talking about the full body wheelchairs and standers, that we'd have to teach her braille, and all these limiting prognoses. Now, to get around she doesn't even need to use a walker and although she's not reading yet, she can identify shapes and colors.
Five years feels like a long time between kids, but with her needs, to get her on the right footing, I don't think it would have been fair to do it any sooner anyway. She says she's ready to be a big sister.
Awesome!!! I am so glad she is doing so great! Stories like that amaze me. My niece has down syndrome and the picture they painted for her was very dismal and she is doing awesome as well. I am glad that you have had a great outcome and I bet she will be a wonderful big sis!!!!!
Congrats!
I am so glad I found this post. I have been searching for someone else with a similar story. I hope you dont mind me reaching out to you, but I have been dying to talk to someone who has dealt with this.
My second daughter was born with a platette count of 9000 and intracranial bleeding to both sides of her brain. We never knew anything was wrong during pregnancy even though I always had that intuition that something wasnt right. She received an emergency platette transfusion 17 hours after birth and was taken to the NICU at a childrens hospital. Our original diagnoses was NAIT but after the blood work came back we were negative for the NAIT, we never received a diagnoses but now that I am pregnant again I go to a perinatologist friday to discuss the IVIG therapy.
Do you mind me asking how the IVIG therapy affected you and thank you soo much for your post, I was beginning to think I was the only one.
Hi!
I get the IVIG twice a week, about 1700 mL each time. It takes at least 6 hours because they start out at a low infusion rate and then increase the flow every half hour to a maximum of 325 mL per hour. In my situation, we have a home nurse that comes and does it in my house, so at least I don't have to find a sitter. They say you can do all your normal household chores while you're hooked up, but it's pretty annoying to have a tube running out of your arm, so I do more sedentary stuff.
Side effects can include flu-like symptoms and even anaphylaxis, so they'll have you do the first dose in the hospital to monitor you, and then the nurse should be equipped with an epinephrine kit for home use. I take 1000 mg of Tylenol and 125 of Benadryl before and during the infusion to help reduce any minor symptoms, like queasiness. The only side effect I've gotten are these little bumps on the palms of my hands and fingers. They dry out and then peel, which gets itchy and painful, so I bought Benadryl Cream and Neutragena hand lotion, which help out a lot.
I'm still nervous because it's not guaranteed. We're using the IVIG in an attempt to fool my body into not creating antibodies against the baby's platelets. I understand it's a very successful protocol, that the risk of an ICH for a child on this treatment is rare, but I won't tell you that I feel 100% certain that this baby is going to be OK.
Thank you for posting! If you need anything at all, or if I didn't answer you well enough, please write back. This is pretty rare and it's easy to feel alone when dealing with it.
I started IVIG at 11 weeks. That's typical, though there's some woman doctor in Chicago (I think) who's trying to start a protocol for starting IVIG at 5 weeks. That's pretty new and I don't know much about it. The doctor who seems to know the most about NAIT and IVIG treatment is Dr. Bussell at Cornell in NYC.
I won't know about starting prednisone until the middle of August, when we do the cordocentesis and take a platelet count for the baby - that's at about 22 weeks. The cordocentesis has greater risk than an amnio, so they do at 22 weeks to give the baby the best chance, but also so that if things weren't meant to be, nature can run it's course (I HATE thinking about that possibility).
If the platelet count is low, then we discuss the steroids. I think it's to help the baby develop faster, though some people think it will help increase the baby's platelet count. I don't know much about taking steroids during pregnancy, but I do know that I'm hoping I don't have to.
Yes, I get ultrasounds every three weeks. Today is the big anatomy one, then in two weeks, we'll get a fetal MRI, and I think we'll be adjusting the game plan after the cordo.
I don't mind answering your questions at all! I'm glad I can help by sharing my experience. We didn't know about the NAIT until our daughter was born. She very lucky to have turned breech and needed a C-Section, because with such a low platelet count, she probably would not have survived a V-birth.
How is your little one doing now?
Kaycie is now a healthy and happy 17 month old. She has bloodwork done every 3 months, and so far she has maintained a normal platelet count. What was your daughters platelet count at birth? I cant remember if you said it in your original post. Did she experience any brain hemmhoraging? We have out 1st ultrasound friday and Im praying for a healthy baby. My hematologist gave us a quick overview of the cordocentesis, and if we decide not to have it done, we will be delivering at 36 weeks. Ive heard mixed reviews of prednisone helping to increase the platelet count, the side effects seem to be horrible. Im sure my dr. will explain our options on friday but I feel like friday is forever away. Have you came across any support groups for NAIT on the internet?
There is a NAIT group on Yahoo, it's got people from all over the world on it. That's the only one I've ever found.
Mary's platelets were 12,000 at birth and dropped to 3,000 in the NICU. She had a large bleed in her left temporal lobe.
Our most positive outlook would be to have the baby delivered at 36 weeks. I think any complications like low platelet counts or having to start steroids would move the delivery date up.
Good luck with your u/s and your consultation, if you need anything else, let me know!