Baby Girl Update & Prayer Request

Ezra and I are expecting a baby girl but learned of some unexpected health complications last week at a routine 20 week ultrasound. Our baby girl was diagnosed with bilateral renal agenesis (BRA), which means she is developing without kidneys. This was a shock to us.

Historically, BRA has been considered a universally fatal diagnosis. It is diagnosed at the 20 week ultrasound after low amniotic fluid is identified and no kidneys are visualized on ultrasound. In our case, the diagnosis was confirmed with a follow up fetal MRI.

In the second trimester, the majority of the amniotic fluid in the placenta is produced and excreted by the baby’s kidneys and urinary system. Amniotic fluid plays a critical role in lung development. Babies in utero practice breathing and develop their lungs by swallowing and breathing in amniotic fluid. Without amniotic fluid, the lung tissue does not develop. Due to this, babies with BRA pass away immediately following birth as their lungs cannot function.

As we learned of our options moving forward, we decided to enroll in a clinical trial at Mayo Clinic in Rochester, MN. The intervention we will receive is serial amnioinfusions into the placenta. The infusions are meant to mimic amniotic fluid, with the goal of developing baby’s lungs. If all goes well, she will survive delivery and receive dialysis to filter her blood. She will need to receive dialysis until she is big enough to receive a kidney transplant. We expect the earliest she will be able to receive a transplant is age 2.

There are several points along this path where things can go wrong. Our baby girl needs a lot of prayer along this journey. Our first prayer request is that her genetic testing comes back normal. If she does not have normal genetics, she will be excluded from the study, thereby stopping infusions and altering our path to a palliative care route. Even if she has a genetic disorder that is compatible with life, she will be excluded from the study. Please pray that she passes this first test and has a normal genetic test result.

As I write this, the first infusion will be tomorrow. Please pray for the physicians and nurses who are performing the procedure—that they have no complications during the surgery. Please pray for me as I recover from the infusion. Please pray for baby girl, that she tolerates the infusion and that her lungs develop as a result.

Baby’s genetic sample will be taken tomorrow during the procedure. We will learn of the results from the genetic testing in 1-2 weeks. We are hopeful that she will have normal genetics and will be able to continue with the study. Again, please pray that she has normal genetics and can continue receiving infusions as planned.

Thank you for considering our story and for your thoughtful prayers. Please share this prayer request with others. We believe in the power of prayer and the power of our God. We started this blog to document this journey. We will post prayer requests and medical updates on the blog as we navigate this path. Thank you again for taking the time to learn about our baby girl’s story and for including her in your prayers.