Malachi’s Miracle Foundation is excited to announce our most recent philanthropic partnership with Johns Hopkins Center for Fetal Therapy. The foundation will be supporting The Renal Anhydramnios Fetal Therapy (RAFT) Trial.
Malachi’s Miracles will be providing financial support for families who require travel to and from a RAFT center to receive amnioinfusions. The infusions are required weekly starting from 21-23 weeks gestation and continue until delivery to replace fluid lost while babies are in utero.
Families need to be within one hour of the center for these treatments. Currently, the RAFT trial is only taking place at nine hospitals across the nation. This often means families temporarily relocate and rack up extensive hotel bills. Our additional philanthropy will provide housing and support for families in their time of need during and after treatment.
The (RAFT) study is testing an experimental treatment for mothers and their babies affected by Early Pregnancy Renal Anhydramnios (EPRA). The study seeks to determine if repeated injections of fluid (amnioinfusions) into the uterus can reverse the effects of EPRA enough to allow affected babies the lung capacity to be able to survive outside of the womb.
EPRA is a condition that can occur in pregnancies when the baby’s renal system does not properly develop. EPRA occurs when the baby’s kidneys, ureters, bladder, or urethra fail to properly develop therefore interfering with the baby’s ability to make or pass urine. After 16 weeks of pregnancy, the baby’s urine contributes to more than 90% of the amniotic fluid that is essential for normal lung development. Untreated EPRA is considered universally fatal.
Preliminary results of the clinical trial have shown amnioinfusion appears to alleviate the severe pulmonary compromise (immature lung development) that has, in the past, led to the death of newborns with bilateral renal agenesis.
The foundation is extremely passionate about supporting this clinical trial. Malachi’s cause of death was pulmonary hypoplasia secondary to multicystic dysplastic kidneys. The goal of the trial is to allow babies the chance to not only survive during pregnancy but also have the lung function to be able to breathe after birth so they can combat kidney disease. Malachi was not given this chance, but many others can if you are willing to support this worthy cause.
You can donate to Malachi’s Miracle Foundation and specify your donation to go toward the RAFT trial.
To read more about the RAFT trial click below
As always thank you for your support!
