Marian Thai
USA
My million dollar miracle baby!
They came and whisked her away to the NICU and told me she had thrombocytopenia. I had never even heard of that. What do you mean my body tried to fight her off?? What do you mean her platelets are low?? I remember laying there in confusion, wondering if she was going to survive. They gave her 2 platelet transfusions and 4 rounds of IVIG. For the life of me, I couldnt understand what the HELL they were talking about. Just kept praying she would be ok… She stayed in the NICU for 4 days and was able to come home with me when I left the hospital.. Jalyssa Elaine… my beautiful 3 year old!
We were very careful about not getting pregnant again,we were done! We had a boy and a girl we felt extremely blessed. At my annual OB appointment, she’s telling me that I have PCOS and it would be very difficult if I wanted to get pregnant again, and it’s just not possible for me, she couldnt believe I had 2 kids, but since I was positive I didnt want any more kids she wanted to put me on birth control pills, but in order to do that I had to take a pregnancy test.. She read the results and she goes “oh geez what is this?” She had to get another doctor to read it and make sure what she was reading was correct. Thats when I heard “YOUR PREGNANT” I was scared… so scared.
All I could think about was the last pregnancy.. the pain and suffering she went through and all the doctors telling me “the next baby won’t survive.” The OB had referred me to a high risk doctor, and they went over genetics and finally explained NAIT to me in a way that made sense. I actually understood it for the first time in 2 years. The docs told me my chances of the baby surviving were slim, and if she did she would probably have brain damage and the best thing for me was to have an abortion. One of the worse feelings in the world, what a HORRIBLE decisoin to have to make.What right do you have to tell me these things without having any knowlege of this condition?? How can you tell me my child has no hope??? She even explained to me since I was so far along that they would have to do the abortion in 2 parts.. I was DEVASTATED, DISGUSTED, and ANGRY.
Desperately seeking hope and answers I found the NAIT group. These women have been by lifeline, I dont know where I would be without them. They have become some of my closest friends. So after many discussions with family, friends, and my NAIT sisters I decided that this baby was meant to be, It’s in God’s hands now. I could never go through an abortion especially when treatment was available. I was going to do EVERYTHING in my power to save this little angel, but if God had a different plan then so be it. I never gave up. I knew I was in for a long, rough road but I knew God would give me the strength I needed.
After many discussions and arguments I finally got the docs to agree to start IVIG at 13 weeks. If there is no harm in starting IVIG earlier then why wait? At 22 weeks I had the first PUBS. The doctor decided he wasn’t going to wait for the results to transfuse, he would just transfuse anyways. The results came back at 9,000, far lower than we had hoped for. That meant the IVIG alone wasn’t working. Thank GOD for the donor who took the time to donate his platelets for me. My doctor immediatley started me on prednisone 60mg,and the side effects were horrid. I ended up with gestational diabetes, mood swings, hot flashes, ETC, but again I was going to do whatever it took for my baby to survive. I had another PUBS at 28 weeks, the platelets were up to 34,000, which meant something was actually working.
Although I know treatments are available, I personally couldn’t go through another NAIT pregnancy. I can handle the IVIG, the prednisone, weight gain, diabetes, insulin, the transfusions, but NOT the feeling of not knowing my baby might not survive. I have been blessed with three AMAZING children. I must admit not every woman could go through a NAIT pregnancy, I guess thats why GOD chose us.
Marian