Outside the Square Box

In the medical world, doing the minimal amount of tests to find a diagnosis is always preferred-to save the doctor time and to save the patient money. I've said over and over that I feel like I've been given the easy "textbook" answer for why I have lost my four babies. "Oh, you're daughter was born with the cord wrapped around her neck-that's why she died." "Oh, your son had Down Syndrome-that's why he died." "Oh, you have a translocated chromosome-that's why you keep having miscarriages. Your daughter must have had a chromosome issues then and died from that, not a cord accident after all."

It's been excruciating to know that I'm not the only one in my family with a translocated chromosome, yet I'm the only one in my family who can't carry even one baby to term. From the day they told me we miscarried our son because he had Down Syndrome, I didn't believe them. After losing our forth baby who also had Down Syndrome-I was willing to try the IVF with pre-implantation genetic screening but I was honestly terrified it wasn't going to work even if we got pregnant with a genetically normal baby because I really thought there was something else going on that the doctors didn't want to look for just because I'm a textbook case for recurrent loss based on having a translocated chromosome.

Well-yesterday I had my phone consult with Dr. Braverman in New York. He asked about my pregnancy and medical history. Immediately after I told him Riley was born with her cord wrapped around her neck he said "that's not why she died." Then I went on to tell him about my three first trimester miscarriages and how the last two were confirmed to have Down Syndrome and how I have a translocated chromosome. I also explained that this chromosome has been passed down throughout my family but I'm the only one having problems with recurrent loss. According to Dr. Braverman, he agrees with me....there must be something else going one where my body is not "baby friendly." He said if the translocation was something specific to me, and no one else in my family had it, he might be able to say that is what has been the cause of our miscarriages....but since it's not just me that has the translocation-it's time to do some digging and get outside the square box that I've been put in by all my other doctors.

Dr. Braverman recommended having an OBGYN order the bloodwork that he would like done, because he cannot order it himself unless we go to New York to see him. He told me if my OBGYN agreed to collaborate with him, he would email her the tests he needs order, I would get the blood drawn in Ohio, and then the blood would be sent to the lab in Boston and he would get the results sent to him to be analyzed. He would prefer us to come to New York to go over the results and a treatment plan, but could also email the results to us.

So the only problem we have at this point in time is to find a doctor who would actually be willing to order these labs for me. I've had a different OBGYN for every pregnancy due to living in different cities each time I was pregnant and due to my third OBGYN refusing to see me after learning I had the translocated chromosome. I don't want to go back to my last OBGYN practice because they 100% believe the chromosome issue is my only problem, plus I now have insurance through the hospital network that I work for. So I'm taking the suggestion of my coworkers and cousin and I've scheduled a "pre-conception consult" with an OBGYN in our hospital network that I have heard wonderful things about. I am hoping that she will be on my side and will agree to not only order these labs to check me for immunological factors that could be causing my miscarriages, but I am hoping she will agree to check me for endometriosis as I have had a strong feeling lately that I could have it and it is what is causing my progesterone not to rise correctly during pregnancy.

My appointment with Dr. Sharma, the OBGYN, is scheduled on April 28th. My sister gets her chromosome analysis done on April 23rd. I am hoping that we have my sister's analysis, my immunological blood work, and my laproscopy completed before we meet with the new fertility clinic on May 13th. I'd like to know all these results so we can make a more definitive treatment plan for future conception rather than having another fertility doctor tell me it's just the chromosome issues we should be worried about.

Right now-we just continue to pray that one way or another, we will have our Rainbow Baby in our arms by next year sometime.