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The next day we saw an MFM that confirmed Hannah had not developed any kidneys and a bladder was not present. While he gave us the same 2 options as the OB he also offered us a 3rd option, an experimental trial offering lifesaving measures. He put a call into a Dr in Houston and the next day we were on the phon, doing intake forms, booking appointments and travel plans.
By the end of the week we were in Texas for our initial evaluations to determine if we would be accepted into the RAFT trial to receive amniotic infusions to save Hannah’s life by developing her lungs. After two grueling days and a week awaiting the test results we were notified we were accepted into the trial and we had to move to Texas. 10 days later, we arrived in Texas with 3 suitcases.
Jami (mom) underwent 22 amnio infusions to help to develop Hannah’s lungs. Because of the complete absence of kidneys Hannah had zero amniotic fluid. Babies practice breathing and swallowing with amniotic fluid. It’s a vital fluid with perfect microbiome to develop lungs, digestion and bladder.
Hannah was born at 33w1d at just four pounds. The minimum weight requirement to start dialysis at birth. Hannah had her first surgery at 14 hours old and was on CRRT immediately after. It was a very rocky road with many ups and downs and close calls. We almost lost her a couple of times. After 182 days in the NICU she came home on peritoneal dialysis, which we perform at home every night.
Hannah has had to overcome numerous physical issues including hip and knee issues, major digestive problems, and now a severely occluded superior vena cava. Despite all obstacles she thrives thru love, deep determination and zest for life.
Now 4 years old, Hannah has finally reached transplant weight. While we are awaiting her evaluations and listing approval we hope to find a live kidney for our sweet girl. We’ll be at Stanford for her transplant.
Life in pictures
