Desiree` and Brent Trimbell
USA
Shae and Brooklynn
After a normal pregnancy, our 8 lb,11 oz son, Shae Michael came into this world on July 28th, 2010. Two days after he was born, my husband and I were getting ready to go home, while the doctor was circumcising Shae. A nurse brought him back into our room, all bandaged up and said that they were having a difficult time getting the bleeding to stop. She said that they were going to recheck his platelets before we could take him home. The next thing I remember was the phone ringing in our hospital room. It was a pediatrician. I handed the phone to my husband because I was just too confused.
The doctor said that Shae’s blood platelets were very low. The normal low end is 150,000, and Shae’s got down to 7,000. They were getting Shae loaded up into an ambulance to transfer him to the NICU of a larger hospital in Albany, NY, about an hour and a half away. There they would transfuse him with platelets and do a CT scan to make sure that he did not have a brain bleed. The ride following that ambulance was such a blur. I had so many questions running through my mind. Why didn’t the doctor who circumcised Shae notice the petechia (little purple dots) all over his little body before she made the incision? Wasn’t she supposed to know that the petechia meant that there was something going on with his blood?…and that by circumcising him, they were putting him in danger of bleeding to death? I just assumed that all of those little purple dots were broken blood vessels from the pressure of delivery. What did I know as a first time mom? Was he bleeding internally? Was I ever going to get to bring him home?
Shae was in the NICU for the longest four days and three nights of my life. All that we could do was wait. They would transfuse platelets into him. His platelet count would rise, and then go right back down again. They did this several times, and in the meantime, they were searching for an exact platelet match. After the second day there, they did the CT scan…and we waited some more. Finally, the results were back from the scan, and there were no bleeds. The best news we had heard in days! Finally, on the third day, they found a platelet match, which they had flown in from Chicago, Illinois. They transfused Shae, once again, but this time his platelets rose up, and they continued to rise. It was a miracle! On the fourth day, Shae Michael was finally discharged to go home.
The doctor’s told us that they were pretty sure it was NAIT, and briefly explained to us that it was a blood platelet incompatibility between my husband and me. We had to get blood work done that was sent to Wisconsin, which confirmed the diagnosis. We met with a hematologist, who explained to us that if we wanted to have any more children, then I would have to undergo treatments from 20 weeks into my pregnancy, all of the way to delivery. I would have to receive IVIG once a week, along with taking prednisone daily. She said that the success rate of the treatment was above 95%.
Needless to say, when I became pregnant with my second baby in 2012, I underwent the treatment. After I reached 20 weeks into my pregnancy, once a week, I would make the hour and a half trek to Albany to receive my 6-8 hour treatment of IVIG. I was also taking prednisone daily. I had more frequent appointments, and ultrasounds to make sure that there was no brain bleeds. Everything went pretty smoothly. At 32 weeks I had a PUBS done to check my baby’s platelet count, which came out at 100,000. We were good to go. I was scheduled at 36 ½ weeks for another PUBS and an amniocentesis, to do one more check of the platelets and of the lungs. If the doctor felt the baby was ready, then they would deliver. If not, they would wait a week, and then deliver. There was a change of plans at 35 weeks, when my water broke on its own. I opted for a c-section because the only doctor qualified to do the PUBS was not on call.
On November 15th, 2012, my healthy 5 lb, 5 oz baby girl, Brooklynn Dawn was born with a platelet count of 100,000!
Our dream came true…the treatments worked! No platelet transfusions were needed, and no NICU! Four days later, we were on our way home.