Who Cares?

Yesterday I had my usual OB appointment. I was a little anxious for this appointment. The last time I saw my OB we talked about what the plan was and when I told him we planned on continuing the pregnancy, he asked if I still wanted to hear the heartbeat at each appointment. Ever since he said that, I was not looking forward to seeing him again. I wanted to give him another chance though since I really liked him while pregnant with Maverick.
So yesterday’s appointment was probably 3 minutes long. Listened to the heartbeat, asked when my next ultrasound was, told me to come back in 3 weeks and sent me on my way. Although I was annoyed about the quickness of the appointment, I really didn’t mind. I was more concerned about my ultrasound appointment. That’s where I had a lot of questions.
Today was another growth ultrasound. I had a little notepad filled with questions and specific measurements I wanted.... this was the first scan since getting the OI diagnosis so I was able to research and see what information I needed to prepare myself. The tech started the scan, the first notable thing I saw was the skull size. Viewing from the top it looked like a lemon. And as you can see in the picture, her head is rather large. From what I could quickly glance at on the ultrasound screen, her head is measuring about a week ahead. The tech quickly was going through the ultrasound, Jim was taking measurement notes as he could. I didn’t mind she was going so fast. I knew the doctor would be coming in and I could ask all my questions then. Her femurs are <1 percentile, Jim thinks it was 22 mm in length. Her abdomen was 192 mm in circumference making it in the 50th percentile. The other measurement I wanted was the chest size, but the tech didn’t do that. That’s okay, I would ask the doctor when she came in. I also planned on asking the doctor if there are any fractures, what the plan for delivery was, when that would happen, among a few other questions. Once the ultrasound was over the tech said she would get the doctor. A couple minutes later passed and the tech returned and said “The doctor said to come back in 4 weeks to see the growth keep going up”.... uhm what? No doctor was going to come in and see me. Discuss the diagnosis with me? Do the blood test to see if Jim or I are a carrier that I discussed with my genetic counselor??? But really, neither my OB or my non-existent maternal fetal medicine specialist wanted to discuss this new diagnosis with me?
The only person who spoke to me about the OI diagnosis was my genetic counselor when the amniocentesis results came in. She only gave a brief background on the diagnosis, and mainly spoke about the genetic side of things. So I was really looking forward to my ultrasound appointment where I could ask my maternal fetal medicine doctor all my questions and we could discuss the diagnosis. None of that happened, and I never been more heated.
Jim and I are well aware of what the most likely outcome will be. We are not expecting some crazy miracle although it would be nice. We still want to be treated fairly throughout this pregnancy. We have questions and concerns. We want to be fully prepared for delivery day.
Jim asked on our way out if I wanted him to go say something and I said no. If they didn’t want to say anything to us, then so be it.
On our car ride home I called CHOP Center for Fetal Diagnosis and treatment to schedule an appointment. We then had to drive back to the hospital to sign paperwork to release my medical records to CHOP. I quickly got a call later in the afternoon and the coordinator went over briefly my medical history, the diagnosis, what we expected and any concerns we had. I told her that I just want support, I want to be able to enjoy the difficult pregnancy. I wasn’t feeling supported by my regular OB or hospital of choice. She said that CHOP has an excellent perinatal palliative team, Jim and I would meet with a maternal fetal medicine specialist, have an extensive ultrasound done, a fetal echocardiogram, meet with their genetic counselor, a social worker, chaplain and eventually a child life specialist to help Maverick navigate this process as well. They will help with a birth plan, memory making options and essentially treat our Waverly as a human, and not a waste of time. We meet with them the 15th of this month, and I’m really looking forward to it. Our hospital of choice may not care, but CHOP does.