Wednesday, January 5, 2011

Diagnosis

I've started this post a couple times, and not finished it. I'm just not sure I have the right words. I believe we had many people watching out for us this past year, and we were placed in the paths of certain people for a reason. One of those, were the doctors and staff early in my pregnancy, the ones that made the spina bifida diagnosis, and helped us get into the Management of Myelomeningocele Study (MOMS).

My last 3 daughters before Ruth were delivered by a wonderful OB in Dallas, whom I LOVED. After we moved, I felt the drive was too far since I have super fast labors, so as hard as it was to leave my beloved OB, I searched around. Based on some glowing recommendations from some local moms, I found one not too far from me. Dr. Moser.

I was very impressed with her and all of her staff, so when we were trying to get pregnant with Ruth and got our first positive test, I made an appointment with her again. Everything was looking great. They have sonograms at every appointment (some just to check for a heartbeat), but I loved that.

I opted in for all the normal blood tests (ones that check for things like SPINA BIFIDA), and everything came back normal. So, everything was looking great when we went in that one day. At 20 weeks. Luckily Matt was with me. We got the big news "It's a GIRL!", but looking at her feet it was obvious they were clubbed. We weren't too concerned with that, having one other child that was born with clubbed feet. But she just couldn't get a good measurement on her head (her head!). So, she called over to the Perinatalogists next door and got us an appointment for early that afternoon. We had time to eat lunch (and try not to freak out), arrange care for our other children, and head back up there. The perinatalogist came in, looked around on a level 2 ultrasound, and said, yep. SPINA BIFIDA. He showed us the opening, which was low, which he said was a good thing. He showed us the signs in her brain, which had caused the strange measurements. He told us about something called the MOM study, which does fetal surgery, and gave us a number to call. Told us to call THAT DAY, because there is a time limit.

So, we did what we needed to in order to participate in the study, but with one hang up. INSURANCE. The study covers the fetal surgery, but anything routine (like OB care, c-section, etc) is still billed to your insurance. And we had an HMO, with no out of network coverage. We were given very grim odds to get approval.

But we had someone in our corner. Dr. Moser, and her office manager Paula. Paula, who also happens to have a daughter with Spina Bifida. Paula worked her tail off, faxing records, answering phone calls, and emails, anything she could to help us get there. I honestly think without her help and support, along with a very kind case manager from our insurance, we would have had a much harder time getting our insurance to approve the transfer to SF.

Since Ruth's diagnosis, I have connected with many other mothers in my position. Many have horror stories about their OB's pushing termination after a spina bifida diagnosis. All I got from my OB and all of her staff, was love and support.

They followed me during my stay in SF, and the two checkups I've had since coming home, have been so supportive. Ruth is a rockstar there. I don't have to worry about getting a babysitter for her during my appointments, she even got her diaper changed!

Left to Right: Paula and Ruth (8 weeks old), Paula and Ruth (4 months old)


I am extremely thankful to Dr. Moser, Paula, and ALL her staff. I am thankful for the Perinatalogists that told us about the MOM study so quickly. I know God placed me at their practice for a reason. It is my wish that every woman facing this scary diagnosis have the love and support I received from my doctors.

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