RAFT Trial fund in honor of Jayden Donovan

Our son Jayden Alexander Donovan was born on August 9th at 9:02 pm. He was 4 lbs 3 oz.

We found out at 17 weeks that Jayden had complications in several of his organs. He had polycystic kidney disease which caused both kidneys to stop functioning, mitral valve stenosis and a ventricular septal defect in his heart, they were unsure if his bladder developed, and Megan had no amniotic fluid in the sac the entire pregnancy. We were told he likely wouldn’t make it through the pregnancy very long.

We were given the option to see if he qualified for a clinical trial called the RAFT Trial conducted by John’s Hopkins. The Renal Anhydramnios Fetal Therapy (RAFT) study is testing an experimental treatment for mothers and their babies affected by Early Pregnancy Renal Anhydramnios or EPRA. The study seeks to determine whether repeated injections of fluid (amnioinfusions) into the uterus can reverse the effects of EPRA such that affected babies have enough lung function to survive outside the womb.

Ultimately, Jayden did not qualify for the trial due to the other defects that his body had. We were able to find a doctor in Omaha who performed the amnioinfusions and we started that for the rest of the pregnancy to give Jayden a chance at life.

Alex and Megan held Jayden for 3 hours and 46 minutes until he passed away peacefully in our arms.

Over the last 16 weeks, we were never sure we would get any time with him alive. We prayed to see his eyes and to get even a single moment with him. He fought so hard to stay with us and even gave us 3 hours and 46 minutes where he stared up at us the whole time. We credit the amnioinfusions with giving Jayden time to grow and develop and ultimately be born alive, even for a short amount of time.

The RAFT trial is very important to the future of babies with this fatal diagnosis. To honor Jaydens life, we are hoping to make a sizable donation to the trial in his name. Our hope is that through this research, babies diagnosed with EPRA will have a better chance at life. We thank you for your support and love.

Alex and Megan Donovan

Information on the RAFT trial can be found here:

https://raft-trial.org