Baby River was born on April, 7th with a Congenital Heart Defect, called double inlet left ventricle (DILV). DILV is a very rare congenital heart defect that affects about 5 in every 100,000 babies. DILV effectively means he has 1 ventricle instead of 2, causing oxygen-rich blood to mix with oxygen-poor blood. When the blood is then pumped to River's vital organs and lungs, it does not provide his cells with the amount of oxygen they need to survive. River also has blood pooling at the bottom of his heart, hypoplastic ventricles and extremely tiny pulmonary arteries. This condition requires at the least, 3 life saving surgeries within the first year, and will require baby River to need ongoing medical care from Cardiologist and other specialist throughout his life, potentially including other surgeries.
River had his first open heart surgery on 4/10/25 at just 3 days old.
On 4/12/25 - River had his 2nd emergency surgery inside his room, then rushed to the OR to get another stint put in to help oxygen get to his lungs. River was just 5 days old that day.
River was placed on VA ECMO following these surgeries and is a miracle to still be here!
He spent his first 100 days in the hospital after birth until his first discharge on 7/16/25 at 3 months old. And has spent 100+ more in the hospital or in outpatient since.
River is my little brother, he was placed with me through social services and in the midst of fighting for his life we are battling court for his safety. I am a single mom to 4 daughters and have completely flipped my world around for River to be healthy and safe since finding out about him!.
River has been admitted to Duke multiple times since with Bradycardia, Hypoxia, Hypoxemia, Pneumonia, Bronchitis, Flu, Rhinovirus, GI Issues, Stomach Bleeding, episodes of losing consciousness, Neuro concerns and more.
River takes a handful of medications multiple times a day. Therapies multiple times a week. On oxygen 24/7, and has an NG tube.
On October 15th River had another heart catheterization, this time he had his Pulmonary Artery, right and left ballooned open in hopes to expand them and open them up larger. He had his shunt unclamped to allow more flow and took blood samples from inside the heart.
this prepares River for his next very needed open heart surgery called the Glenn procedure.
Rivers next heart catheter is on February 4th in hopes to replace his SANO and mBTT shunt to larger ones to promote pulmonary growth. Ultimately if this does not work to make River a good candidate for the Glenn Surgery, he will need a heart transplant.
Over the next few years Duke University Hospital will be our new home away from home, which is 2 hours away. We travel to Duke every week multiple times for cardiac follow ups, feeding and physical therapies, and hospital stays and more.
Dealing with this difficult diagnosis has put tremendous emotional, physical, and financial stress on my family. This has already been a long, difficult road and will continue on . Doing this on my own seems next to impossible, not only as River’s sister but as a single mom to 4 daughters. I have missed months of work, currently being declined for FMLA and a house lease that is up in March. I’m barely keeping our heads above water. River is so very loved, a true blessing and I just only hope that people with big hearts will help us save the tiny heart of little baby River. Any amount will help and be very much appreciated.
** River is currently 9 months old. Next procedure on 2/4.
UPDATE as of 2/12: River had a heart catheterization on 2/4. He was intubated and put under anesthesia for this. He had his pulmonary arteries ballooned open once again, and had a new stent placed in his SANO.
River had a rough recovery the day he came out of surgery. He had an uncontrolled bleed in post op ICU room, which ended up causing him to need a blood transfusion. He stopped breathing multiple times due to high doses of morphine and being extubated so soon. BUT he recovered after anesthesia wore off and pain meds were no longer needed. He is a FIGHTER and he is so BRAVE.
Open heart surgery for the Glen procedure is scheduled for April 2nd, 2025.
I have had to resign from my job that I love dearly to keep good standing. Your support means so much.
if you cannot donate, please share. Please spread rivers story and send all your prayers up in his name.