COTA for Elijah SV

Our Story

Elijah was born on November 21, 2016 with multiple heart defects. Rush Copley did a fetal echocardiogram by routine during pregnancy because his mother also had a congenital heart defect that is known to be hereditary. In the fetal echo, they found an abnormal looking mitral valve and a large VSD (a hole in the wall that separates the left and right ventricles). After a few follow ups, it was decided that he was safe in his mother’s womb, but they couldn’t be sure what would happen once he was born.

At 5 weeks old, Elijah had a follow up appointment with his doctor and was started on his first of many medications to follow; a diuretic to pull fluid from his lungs. Two weeks later his chest x-ray was performed and he was admitted for the first time at Rush University. He was too small and his heart was already enlarging. He and his family spent a week in general pediatrics, in which they adjusted his diet and medications. It was imperative that his mother stop nursing because her milk didn’t have enough nutrients to provide for Elijah’s protein deficiency. He was soon started on formula, but he didn’t gain any weight. Unfortunately, drastic increases in his caloric intake via prescription weren’t proving to be helpful, which lead to the introduction of a necessary and successful feeding tube.

He had been discharged shortly after, yet ended up right back in the E.R. (without even going to sleep) with his first case of pneumonia.

The roller coaster had begun.

His first surgery was performed on March 2, 2017 at the age of 4 months. It was a Pulmonary Artery Banding in order to restrict the blood from pooling during circulation. The hole in the bottom of his ventricular septum was causing an overflow, and the tethered mitral valve wasn’t helping the matter. The PA band was a temporary fix to hold him over simply for him to grow more. Post-surgery, he coded and was resuscitated by his nurse after (roughly), 2 minutes of compressions and came back to the world.

Elijah was discharged from the hospital on St. Patrick’s Day 2017 and he, as well as his supportive family, stayed at the guest house with him until the 19th to make sure he was ok before leaving Chicago to return to the far western suburbs. Not without a few temporary feeding tubes but he was ok for the most part. His medical team predicted he would outgrow the band on his artery in 4-6 months and it would need to be removed when that time came.

A year went by and he was coming along steadfast! Such a young boy learned to roll, crawl and eventually walk, while delayed from hospital admissions and surgery-he was doing exceptionally well!

Sadly, the hole in his heart wasn’t closing. Babies born with VSDs, the hole usually closes at least a little, if not completely on their own. The pediatric cardiology team decided it was time to take further action and ascertained that once the hole was closed, his heart rate should go down and help him breathe easier, which would be what he needed to thrive and grow.

June 2018: Surgeons patched the hole in the OR with synthetic tissue. They also removed the PA band and repaired the artery of any damage the band had done.

While running into a few issues, the surgery went as well as they could’ve hoped, inclusive of cutting into Elijah’s left ventricle in order to patch the hole, yet unsuccessfully able to access it through the tricuspid valve. Young Elijah came off of bypass with 2 new patches on his heart, 1 less band, and a mostly closed hole. He indeed fell victim to “pump slump” or “pump dump” as it’s called. (It’s what the nurse warned us could happen at about 12 hours after being taken off bypass).

Valiantly, his nurse caught it, cranked up his oxygen and performed extraordinarily elusive actions. He was not going to code out that night after struggling so hard. A brief moment of difficulty approached, more so, impending death as Elijah’s skin began to turn blue. The doctor bagged him until finally able to put a breathing tube in. His doctor had saved Elijah’s life AGAIN.

Elijah recovered and was discharged after a long 5 weeks post surgery. He had regular follow up appointments in Joliet, Aurora, and Chicago. ECG’s and chest x-rays were frequent. Everything was ok, yet, he wasn’t actually getting better and he was on more meds than before the corrective surgery.

His echo in October 2018 was concerning to his cardiologist because 4 months post-op should’ve been showing improved function by then. It was said it was likely nutrition related and sent us to a Pediatric GI. The GI started him on an appetite stimulant (his fifth oral medication at the time) hoping he would consume more of his favorite foods because his diet was fine.

In November 2018, he came down sick out of nowhere. His fever got up to 102 twice when the Motrin would wear off. His mother brought him to the ER that night and the doctor that was on-call had seen Elijah previously and knew that something was very, very wrong. He said that he feared Elijah would not make the trip back to Chicago that night, so he transferred him to Peoria Children’s Hospital of Illinois for heart failure and possible sepsis. Peoria’s staff explained that Elijah was in moderate heart failure (teetering severe) and possibly fighting an infection that they couldn’t find yet. All while his 2nd birthday was taking place.

While in Peoria that November, the family was asked if anyone had ever brought up cardiomyopathy. His mother said, “no, I’ve never heard of it.” They had multiple genetic panels done on Elijah suspecting that that’s where the answer was. It appears they were right. Not only did they find that Elijah has a bicuspid aortic valve, like his mother, but his is functional. They also found multiple genetic mutations. The results didn’t come back until January but one, the TTN mutation, is pathogenic and directly related to Dilated Cardiomyopathy. A rare genetic disorder that causes your heart muscle to be inherently diseased. That is what was causing Elijah’s heart failure.

He was admitted again for a Rhino/Entero virus on December 21 and discharged on Christmas day. At the end of February 2019 he caught strep throat. Every illness knocked his heart’s efficiency down a little more. He was admitted at Lurie Children’s Hospital in Chicago on March 1 with 19% efficiency and was listed as a 1a on the national wait list for a donor heart on March 14, 2019. He was put on IV Milrinone, taken off, then put back on it when he contracted C Diff and later 2 respiratory viruses.

He remained stable on IV Milrinone and the family was thoroughly trained on his PICC line so that he could wait for his heart at home. While that dropped his status on the wait list to a 1b, he needed his family, and the goal is always to keep the native heart as long as possible.

Elijah is currently at home with his family awaiting transplant – receiving weekly visits from his home nurse along with monthly visits from the transplant team.

Lurie’s performed an annual transplant evaluation in 2020 and that resulted in Elijah being listed as status 7 with UNOS which meant he did not need a donor heart! The IV 24/7 for 400+ days strengthened his heart enough for him to transition back to oral meds and live a normal life!!

COTA funds raised in that time drastically helped Elijah’s family support his needs and he pulled through!! Funds were used for transportation costs to and from the hospital, parking, food, shelter for the whole family in times of need. They covered life saving medication when insurance approval did not come through on time, medical supplies, and kept Elijah’s family together.

Over FIVE years have passed, following up with the team at Lurie’s clinic, monitoring his condition closely. He has lived a mostly normal life to the fullest going to school and summer camp at the Y, making friends and loving life. He’s gone on vacations to Wisconsin Dells, Mall of America, and most recently, New Smyrna and Daytona Beach, Florida. He even tried soccer MVP at the local park district!

April 17, 2025, a cardiac catheterization confirmed that the pressure in his lungs increased since the previous findings in 2022. Elijah’s native heart has been failing moderately, teetering severe, and is now affecting his lungs. We think they caught it pretty early but the transplant team at Lurie’s in Chicago agreed that it was time to list him for a donor heart again. Elijah’s mom signed consent on September 17th and he was listed again as a 1B within days, resuming his position at 400+ days. 

Elijah’s resilience has amazed everyone he encounters since the day he was born and he is still SO happy. His team is raising money for COTA to assist with transplant-related costs.

If you want more information or would like to help, please contact our community coordinator, Angelica Sakota at asakota21@gmail.com.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.