We met with a physician at Mayo on Monday. We were hoping to leave the appointment with some clarity surrounding baby’s birth plan and NICU care. Instead, we were met with a barrier. It was relayed to us that baby may not be eligible for kidney transplant with 22q11.2DS. We never heard this information prior to the consult. It felt the door for baby was closing. We were dismayed by the potential of her disorder excluding her from consideration for kidney transplant. Ezra scoured the Internet for information regarding 22q and bilateral renal agenesis. He found a pediatric nephrologist who is familiar with 22q who was willing to share her insight on the matter. She agreed to consult with us on Wednesday.
After the consult at Mayo, many tears were shed. Turmoil consumed me. In the last three weeks since baby’s diagnosis of BRA, I’ve learned that nothing is certain. Tuesday was spent in Omaha with family. While I tried to engage with my studies, I was constantly interrupted by phone calls from physicians, nurses, and other entities that are connected to our case. By the end of the evening, I couldn’t wait for my head to hit the pillow.
Wednesday morning was baby’s third infusion. It was well tolerated. During the procedure, we asked the physician if 22q would prevent baby girl from receiving a kidney transplant. He reassured us that he could not think of a reason why 22q would be a contraindication for kidney transplant. He also elaborated by describing operations performed on babies with more severe genetic disorders than 22q. We left the appointment with optimism.
Ezra and I consulted with a pediatric nephrologist from New York just an hour after the infusion. We told her our story and she gave us very useful information. She reassured us that having 22q would not be a contraindication for kidney transplant. In fact, she said that it would be unethical for a practitioner to deny her a kidney transplant based on the genetic diagnosis of 22q. Yet again, after we thought baby would not qualify for life-saving treatment, we learned that there is no current reason for her to be disqualified.
We made a handful of other connections this week with people familiar with 22q, BRA, and other issues pertinent to baby’s health. The amount of support we have received in the form of advice from all corners of the country is truly remarkable. For every roadblock we have faced, we are swiftly met with a suitable alternative route. God continues to provide.
The plan for right now is to continue weekly amnioinfusions in Omaha. Thankfully, Ezra’s extended family has agreed to graciously host us for the duration of the infusions. We are not certain where we will deliver or where we will be for dialysis and transplant. Please pray for guidance surrounding baby’s postnatal care and for the right doors to open. Please pray for the doctors, nurses, and other healthcare workers who will be a part of baby’s care team. Of course, please continue to pray over baby’s lungs and development in utero, and that she is not born prematurely. Thank you for your continued prayer support during this time.
Baby Menon 