Boston, MA, USA
My introduction to NAIT
The day I went into labor I was so overwhelmed and excited. Finally the day has arrived I am going to meet my little angel. Labor was long and stalled so after 24 hours they decided they would have to do a cesarean section because my heart rate was dropping and hers was rising. All prepped for surgery, scared and excited my little girl has arrived. Everything quickly changed, I got to hold her for just a moment and then off they took her. I lay there being unable to move and no one would tell me what had happened. In recovery I lie there crying; begging the nurse to let me see her and asking for answers. The nurse decided she would wheel me in the gurney to the special care nursery and a swarm of nurses and doctors were surrounding my daughter. The doctor began telling me that something is wrong and they are trying to figure it out because she is covered in petechiae. I remember thinking what in the world are petechiae and what is wrong with my daughter.
I was ill all night from the surgery and medication and I spent every 30 minutes calling to the NICU checking on her and seeing if there is anything they can tell me. The morning came and surgery or not I walked myself right to the NICU. The doctor sat me down and said that my daughter was born with a platelet count of 4,000 and they are running some tests and consulting with physicians from Boston Children’s Hospital and they believe it is neonatal thrombocytopenia. I remember thinking that is a “big” word. The doctors said they would need to give her IVIG and contact Red Cross to get platelets to do a transfusion to try to raise her platelet count. The first thing I did was go to the hospital internet and start searching for information. I was shocked and disappointed that I was not able to find more than a handful of websites. Then a godsend when I came across a support group of other mothers with experience with NAIT. I posted and received response immediately, this was my lifeline and I learned so much so I was able to take a roll in my daughters care.
For the next two weeks my daughter remained in the NICU where see received numerous transfusions and IVIG treatments. She was able to be discharged home when her platelet reached over 50,000 and she was then followed by Boston Children’s Hospital. The next six months was spent going to Boston Children’s Hospital three times a week, once for me to donate my platelets and twice for them to transfuse her with them. This was a temporary solution as my platelets had the antibodies that were destroying any platelets that she was able to create. Thankfully through the knowledge of this group I was able to request specialized blood work through the Blood Center of Wisconsin that could identify myself and her fathers antibodies and antigens. With this testing the doctors were able to identify the exact antigens that were attacking my daughter and they were able to find a more specific match for her to receive and this was successful. It took six months of tears but with this group I found a sisterhood of woman that helped me every step of the way and for this I will be eternally grateful.