Something new and real to worry about

I've been bad about writing. We've had a few major events happen over the past few weeks. After I got the autopsy results, I knew that I wanted to seek a second opinion; more for my own peace of mind than anything else. When my mother had been diagnosed with cancer, she never got a second opinion. At that time, I promised myself that if something major ever happened to me medically, that I would seek a second opinion.


I made an appointment with a high risk ob. I had picked her out online, but also had heard from a friend that she was a highly respected physician at one of the best hospitals in the city. I had to argue with her office, but ultimately, they agreed to give me an appointment. My normal ob had chalked up Dashiell's death to a cord accident, and I truly believed that myself. So much so, that I almost cancelled my meeting with the new doctor.



After about 15 minutes of looking over my records and the autopsy report, she had thought of 3 possible other causes. One of which was neonatal alloimmune thrombocytopenia. She told us that it is an extremely rare condition and it was probably not the case, but she felt it was important to rule it out. It's so rare, in fact, that there is only 1 lab in the country that performs the blood test. She explained that, if this was the case, treatment is extremely complicated. Little did we know that we were already pregnant at the time of this meeting.



She kindly arranged for her office to draw my blood and my husband's blood on April 9 (2 days before I found out that I was pregnant) and sent them off to the lab. I truly thought this would not be an issue, so I just brushed it off.



On Monday, April 28, around 5:30, just as I was getting ready to leave work, I received a phone call. "Hi Allison, this is Dr. X." As soon as I heard that, I knew there was something wrong. IT turns out, I tested positive for this very rare disease. She explained that they had only ever seen one case of this at the hopsital where she works and was referring me to a perinatologist, with an extensive background in treatment and research of this. She also explained that treatment involves weekly IVIG (essentially a blood transfusion) as well as sampling the fetus' blood through the umbilical cord. Very scary stuff, but I was actually calm. I immediately called my husband, who then scared me. He is obviously very scared and worried about this. The good news is that we only have a 50% chance of the baby having this. (If you have the condition, it's either a 50% chance or a 100% chance). However, due to my history, they will likely start treatment very early. They won't be able to tell if the baby has this until they can perform an amniocentesis, around 17 weeks. That means, regardless, I'll be having 5-7 weeks of this IVIG.



There is not a whole lot of published information on this disease. I've put the link up here for the Wikipedia explanation as well as the link to the support group I've found. They have been a wealth of information and a great support. The good news is most of them have gone on to have healthy children. The road to bring them home is not an easy one, but I wasn't expecting this to be easy anyway.



I'm thrilled that I live here in NYC. I'm so close to the best care and feel very lucky about that. I have my first meeting with the perinatologist and also a pediatric hematologist / oncologist on Tuesday. I had my first prenatal appointment already with my "new" high risk ob on May 5. The baby measured at 7 weeks, 4 days with a heartbeat of 168 and I got "due date" of December 20. The baby will likely be delivered much earlier, between 32-36 weeks, depending on the platelet counts. Even if the baby does not have this, I'll likely be induced around 36 weeks.



On top of that, I'll be referred to an ob in the perinatologist's practice. A team of 3 doctors. The IVIG treatments are long, around 7 hours, so I'll be out of work 1 day a week once they begin. From what I've read, the side effects are not very much fun, but if it means that I'll be bringing a healthy, normal baby home, it's all worth it.



I'm so thankful that I found the "new" high risk ob. Otherwise, I would have gone forward thinking that I lost Dashiell to a freak accident. The new doctor who diagnosed us is actually leaving NYC in June. I'm so thankful that we found her and that she caught this. I'll definitely have more to write about in the coming weeks.