I am so ridiculously excited about this. I was in my Facebook NAIT group and saw a link about this company needed mother’s plasma that are negative for HPA-1a antigen. THAT’S ME!!!
So I submitted my information to donate plasma and am hoping I will be able to help create the cure for this disorder! Prophylix Pharma is the company from Norway that is dedicated to creating the cure. Their website states:
The drug that we aim to develop for prevention of FNAIT will work in the exact same way as anti-D immunoglobulin which today is used to protect Rhesus-negative women from being immunized against RhD antigen on the surface of red blood cells from their foetuses.
The extensive use of anti-D immunoglobulin therapy has shown that immunoglobulins may effectively prevent a woman from being immunized by an antigen from her foetus. Most importantly, the therapy is very safe.
Mothers, we need your help!
Please sign up as plasma donor, if you have given birth to an FNAIT child and want to help us save the lives of babies at risk of developing FNAIT.
I would love to be able to have another baby and not have to have a PICC line and 34 eight-hour IVIG treatments! Maybe I could even carry the baby to full term and not have to deal with jaundice or the baby not nursing enough… better not get ahead of myself. 🙂 Lucy just started walking last month! She was born with 224K platelets thanks to my treatements (I did get to play an excessive amount of Plans vs Zombies on my laptop during those treatments – which would never have happened otherwise). 🙂
Anyway, if you’re a mom that found my blog because you have NAIT / FNAIT / MFAIT and you are missing antigen HPA-1a, then please sign up and send your plasma to Norway!
My husband, Erik, and I had decided to have an all natural home birth with a mid-wife. I was going to be able to labor and have the baby in a doula pool. No drugs or unnecessary procedures would be used. I would be able to eat while in labor (which is very important because a woman’s body burns a lot of calories while in labor) and doctors do not allow you to eat while in labor (in case you need an epidural). I would be able to breastfeed my baby as soon as it came out. The first 30 minutes after a baby is born they are usually awake and if they are given the opportunity to breastfeed at this time they typically continue to breastfeed well. This golden opportunity is usually missed when you have a baby at a hospital. The most important factor for me was the ability to have the baby in any position that was most comfortable (or least painful) to me. At hospitals you have to labor on your back which is only best for the doctor. I didn’t want to have pain pills because they can affect the baby. We had regular 1 ½ hour appointments with our mid-wife (who gets that kind of one-on-one time with their doctor?) We knew the possible problems that could occur and had our emergency plan in place.
December 18, 2007 9:00 p.m. One day after my due date, I felt the first contractions. It was around 9:00 at night and I knew I needed to get to sleep. But I was excited about finally meeting my baby and finding out if it was the little girl I had been dreaming about. I stayed up for a few more hours talking to my mom who was staying with us to help out with the baby and our business. At 3:00 in the morning the contractions woke me up and I knew this was it. I woke up Erik and told him he wouldn’t be going to work the next day, we were having a baby! We timed contractions for awhile and called the mid-wife. By mid-day on December 19th, the mid-wife had been to see us and left. I still had a ways to go and the labor seemed to progress better when the mid-wife wasn’t there. I thought for sure I would be having my baby that evening. But as evening approached I began to realize that my baby was not coming that night. The mid-wife had me take a shower and go to bed. Sleeping while having contractions every 3-6 minutes doesn’t work too well. I had to wake my husband up for every contraction so he could push on my lower back to reduce the pain (and he was timing contractions). The longest stretch of sleep I had that night was 11 minutes.
By the morning of the December 20th the contractions were very painful and I was worn out. I was trying to eat but my contractions were so bad I would throw up during them. So I wasn’t keeping much, if any, food down. Around noon the mid-wife checked me and I think I was around 6-7 cm and the baby was riding really high up in my belly. The mid-wife decided we should go for a ride, a really bumpy ride. So Erik & I got in the back of our van and the mid-wife drove us around on bumpy, snowy, icy, country roads. We did stop at a Burger King and I managed to keep most of Cheeseburger down and a frozen coke (I craved frozen Coke through most of my pregnancy). But in general, that was the worst van ride of my life. It did help though. After the 1 ½ hour ride, the baby had dropped and I was about 9 cm dilated. Then the bad news came; our baby was breach. One of the mid-wives thought she felt the scrotum. What?!?! A scrotum, girls don’t have scrotums! I was so sure I was having a girl, that just added extra chaos in my mind. But a big decision was in front of us: to go ahead with a breach home birth or go to the hospital. The mid-wife said if we went to the hospital they would definitely do a C-Section (which we really didn’t want). The mid-wives could deliver the baby at our home, but once the butt came out I would only have 5 minutes to get the head out. I was so worn out from being up for days I wasn’t sure if I could do it. The next 2 contractions were so painful that I decided it was time to go to the hospital, I couldn’t handle much more pain and I just wanted my baby to be safe and healthy.
We grabbed a few things and headed for the hospital. I have this blur of memories of checking in at the hospital, being taken to a room, having my blood taken, an IV put in, a catheter, an ultrasound, heart monitors for me and baby, tons of questions – all while having very strong contractions. The doctor at the hospital just happened to be the OBGYN that I used to go to a few years back, so that was nice, at least I knew her. She checked me and said I was 8-9 cm. They wheeled me out of that room and into surgery. They put a spinal block in and finally the pain stopped. They laid me down and began to operate. Erik showed up in scrubs.
After awhile I heard my baby cry for the first time! I waited an awkward moment, expecting them to say the sex of the baby or something, but no one said anything. I asked if it was a boy or girl and the doctor said it was a girl! Erik and I both cried, we were so happy. Then I asked if she had any hair (Erik had told me the whole pregnancy not to expect our baby to have any hair). She did have lots of hair! Erik was able to go over a take a picture of her with our digital camera and bring it back for me to see (this is the picture). Then finally they brought her over to me, all wrapped up. I could see a little bit of her face, but she was adorable.
Little did we know that our lives were about to get much more complicated…
Neonatal Alloimmune Thrombocytopenia (NAIT)
In retrospect, we now see that Sophia being a breach baby was a blessing in disguise. Having an emergency C-section followed by Sophia’s admission to the Neonatal Intensive Care Unit (NICU) were vital steps to saving her life. Only in the NICU is a platelet count a standard test. Thankfully Dr. Chua saw her low platelet count and was able to take the steps necessary to save Sophia’s life. When Sophie was 1 day old, I was taken by ambulance to a clinic where I donated platelets to my baby. All I wanted was sleep and food, but not yet! Sophie was given her 1st platelet transfusion that evening. Our experience in the hospital was chaos. A whirlwind of decisions, rushing to the NICU to feed baby, being checked myself, trying to sleep but rarely getting to, trying to get our baby out of the NICU, and filling out paperwork. Sophie was weak from crying because of all the needle sticks and was too weak to eat. We had to give her a feeding tube at one point. That was a horrible moment, luckily it didn’t last long. We got out of the hospital on December 23rd knowing we would be back soon.
We were home for Christmas which was nice (but busy with lots of visitors). Sophie returned to the hospital on December 28th for her 2nd platelet transfusion. I had to go give platelets for a 2nd time on New Year’s Eve and Sophie received her third platelet transfusion on January 2nd. A fourth transfusion happened on January 7th. As of January 21st, 2008, Sophia was making her own platelets and was declared a healthy baby!
The rare disorder that we encountered is called Neonatal Alloimmune Thrombocytopenia (NAIT). It is a very rare disorder in which the father has an antigen that the mother lacks. Less than 2% of Caucasian woman are missing this common antigen. Unfortunately I am part of that 2%. The antigen from the father is passed on to the baby. When the baby’s blood and the mother’s blood mix during labor, the mother’s antibodies begin attacking the baby’s platelets. If the baby’s platelet count drops too low, an intracranial hemorrhage will occur. Thankfully we were able to prevent a hemorrhage by giving Sophia 4 transfusions of my maternal platelets. After a month, my antibodies had died out in Sophia’s body and Sophia began producing platelets. The good news: Sophia is now a healthy 4 year old. The bad news: we would have to deal with the NAIT disorder with all future pregnancies.
A Work-From-Home Mom with Neonatal Alloimmune Thrombocytopenia, Breastfeeding, Cloth Diapers, Low-Carb, Graphic Designer, Purdue University Alumni, Basset Hound Lover