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5/17 Medicine is an Art

May 17, 2018 | 29 weeks

I had another appointment today. It was supposed to be a very short visit at 8:45 am with the nurse practitioner. Then she asked me if I had any questions. I thought for a moment that I would just wait to discuss all of this week's new information with my actual OB at the next appointment, but when I opened my mouth to speak, everything just came rushing out. So I got another appointment squeezed in during the lunch hour.

I had about 2 hours to kill, though. In the meantime, I did the 1-hr glucose test and walked over to the hospital to pre-register myself. It was my first time in almost 9 years stepping into a hospital while pregnant. I was in business mode, but as I sat down to fill out my paperwork, the reality of what I was doing suddenly hit me: I'm going to deliver a baby here, and that baby might die here. I'm going to walk down those maternity halls and deliver a baby and hear newborn baby cries all around me, but in my room, I will be the one crying. I was comforted to see this verse on the hospital wall: Come to Me, all who are weary and heavy-laden, and I will give you rest. (Matthew 11:28) This entire experience so far with this pregnancy has been wearing me out. The news that your baby has a fatal kidney disease is heavy & burdensome. The Lord knows, and He will give me rest one day.

I finished my paperwork and walked back to the office and met with my OB and told her about everything I had been reading in these facebook groups. We had agreed in the beginning that she would just provide comfort care for me, since baby's condition was deemed fatal, helpless, and hopeless. But now with all this new information, I'm wondering if we should change our course of action. Should I try the steroid injections for lung development? Should I talk to a pediatric nephrologist and have one standing by at birth to assess baby and see about a possible surgery and dialysis?

The worst was when I began wondering: Is there something I could have and should have been doing these past 9 weeks to help baby? That just opened the door for more guilt and shame. There's absolutely nothing I can do to change the past. We did what we thought was best with the information we were given, and we were given a very confident diagnosis of death. Yet here we are, 9 weeks later, and I am still pregnant and baby is still growing, and now I'm reading of ARPKD survivor stories.

The doctor and I decided that I would go and get a second opinion from a local perinatologist friend of hers. A new set of eyes. It is scheduled for May 31, and I can barely wait.

As we talked, she also reminded me again that medicine, though a science, is also an art. She has said this before at appointments, but it wasn't until this time around that I fully grasped what she meant, and the implications of it. I've been going into this diagnosis looking for a similar story that matches up with mine. I want to see the data, see the numbers, see the measurements. If I were to come across a story where the baby is diagnosed with ARPKD at 20 weeks, and has no amniotic fluid, and baby measures 2 weeks behind, and so on, just like me, and baby dies in the womb at 29 weeks, then I would expect the same for my baby because the numbers match up. But life and death are not in numbers. Life and death are entirely in God's hands. Doctors and scientists study diseases and notice patterns and make generalizations about how things usually turn out, but there are always exceptions, because it is the Lord who gives and takes life.

I don't know what the end of this story is yet, but I do know it is in God's hands. God, the Lord God, who is a personal God, the living God, a loving Father, and not some impersonal force in the universe.


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