provide , including how we discuss these diagnoses , how we make these decisions , and how we ’ ve created continuity of care across prenatal care , the NICU , postnatal care and transplant . It ’ s crucial information that allows referring providers to partner with us in caring for these patients .”
MICHAEL ZARETSKY , MD
Medical Director , Colorado Fetal Care Center , Children ’ s Hospital Colorado
Associate professor , Ob / Gyn-Maternal Fetal Medicine , University of Colorado School of Medicine
The third component is research . The program has established a pediatric GU research biobank to store samples of tissue , blood , urine and DNA from all patients with a fetal GU anomaly seen at the Colorado Fetal Care Center at Children ’ s Colorado . One current study is looking at postnatal outcomes in fetuses with suspected bladder outlet obstruction . Using fetal urine samples , researchers hope to distinguish novel biomarkers that might identify patients at risk for significant kidney disease in the early postnatal period . “ After about 18 weeks , fetal amniotic fluid is primarily composed of fetal urine ,” says
Dr . Vemulakonda . “ In cases of bladder outlet obstruction , where we intervene to drain the bladder into the amniotic space via a shunt , we actually obtain a fetal urine sample from the bladder to assess novel biomarkers and compare them to amniotic fluid samples of age-matched controls .”
RAFT CLINICAL TRIAL
Children ’ s Colorado ’ s wellorganized GU anomalies program , fetal team and external review committee made it a prime candidate for Johns Hopkins ’ Renal Anhydramnios Fetal Therapy ( RAFT ) multicenter clinical trial . The RAFT trial is evaluating interventions for early pregnancy renal anhydramios , or EPRA , a condition where a pregnant woman lacks amniotic fluid around her fetus due to a problem with the fetus ’ kidneys , such as bilateral renal agenesis . Specifically , the study is investigating whether amnioinfusion — repeated injections of fluid into the uterus — can reverse the effects of EPRA such that affected babies have enough lung function to survive outside the womb .
“ The goal is to bridge these patients to dialysis and ultimately to transplant around age 2 or about 10 kilos of weight ,” says Dr . Vemulakonda . “ Here at Children ’ s Colorado , we ’ ve actually had experience with patients who fit those criteria over the past couple of years .
GU Anomalies Program Multidisciplinary Team
• Ethicist
• Fetal radiologist
• Geneticist
• Maternal fetal medicine doctor
• Neonatologist
• Nephrologist
• Pediatric anesthesiologist
• Pediatric surgeon
• Psychologist
• Social worker
• Transplant surgeon
• Urologist
Somewhere between six and eight of our patients have made it to delivery .”
Of those patients , three made it to the age of transplant , and one of those three was ultimately transplanted .
“ The other half did not survive through their NICU stay for multiple reasons and complications . But the experience we ’ ve amassed related to continuity of care is incredible , and it ’ s why we wanted to be part of this trial ,” she says .
“ We ’ re proud of the longitudinal multidisciplinary care model we ’ ve built here with this program ,” adds maternal fetal medicine specialist , Michael Zaretsky , MD , who led the effort for Children ’ s Colorado ’ s inclusion in the RAFT trial .
“ And really , it ’ s something you see across our entire system here at Children ’ s Colorado . The multidisciplinary aspect certainly helps us improve care and outcomes .” •
The RAFT trial is open for recruitment . Study leaders expect the trial to continue for at least 6 to 10 years .
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