Ellie’s Story

Today’s story is very meaningful for me. Ellie’s story reminds me so much of Lucy’s and, although I hate that Ellie’s family went through the pain of losing her, it helps me to have a friend like Ellie’s mom Jennifer, who pretty much knows exactly what I’ve been through. In fact, Jennifer and her family recently welcomed a baby girl Amelia Iris, who has a big brother still here and a big sister in Heaven just as Scarlett will. I am so honored to share the story of this precious little girl’s life.

 

Eleanor Lily Ayers was born on August 2, 2011. She was the product of a perfect pregnancy, other than giving her mother a little gestational diabetes.

By about 4 weeks of age, Eleanor’s mom had the feeling that something was just off about her. But there was nothing overtly wrong with Ellie, as her parents called her, just a mother’s intuition.

In November of 2011, Ellie started developing cold-like symptoms. She had recently started day care and the whole daycare room seemed to be sick. On Sunday, November 20, 2011, Ellie was taken to the Emergency Department for those same symptoms. After a chest XRAY, the ER attending told Ellie’s mom that Ellie’s heart looked a little enlarged to him but he “didn’t do babies”, so he was calling the pediatric residents to take a look. The residents said that they didn’t believe Ellie’s heart was enlarged, that it was the way she was turned on the X-ray. They gave Ellie’s mom a prescription for a nebulizer, advised that Ellie would continue to cough for about 3 weeks, and told Ellie’s mom to follow up with her pediatrician before Thanksgiving. A follow up appointment was scheduled and the pediatrician advised to continue with the recommended course of treatment. Everything pointed to a cold.

On December 6, 2011, Ellie was scheduled to have her 4 month well baby visit with her pediatrician. That morning, her mother’s only concern was whether or not they would be administering her vaccines due to her continuing cold symptoms…. By the end of the day, the worry would change to whether her daughter would survive the night.

During Ellie’s exam, Ellie’s mom discussed those nagging feelings that she had that something was just not right with Ellie. Ellie had stopped trying to roll over, she had stopped making noises she had been making a few weeks before, and she sounded raspy and grunty unlike “normal” baby cooing. Ellie’s pediatrician began her exam and immediately heard a very pronounced heart murmur. She asked if Ellie had been sweating with feeds or turning blue around her lips. She had not been, but she had never been a great nurser. Ellie’s pediatrician stated that sometimes a murmur can be innocent or signify something more, so she wanted Ellie to have an echocardiogram. She left to make the referral and Ellie’s mom attempted to nurse Ellie while they waited. While nursing Ellie in the office, Ellie started sweating and her lips DID turn blue. Her pediatrician was able to get Ellie in for an echo immediately with instructions to take Ellie up to the Pediatric ward of the hospital so that her oxygen levels could be monitored overnight. Ellie’s mom called Ellie’s dad and met him over at the hospital. The woman doing the echocardiogram on Ellie has the best poker face EVER. She was looking at a train wreck and never let on.

Ellie’s parents arrived in the pediatric ward and still were getting settled in, not realizing the nightmare that awaited them. They called Ellie’s grandparents to let them know to pick her big brother up at school. Pretty soon a nurse came into the room, stated that the Cardiologist had read the echo, and they were arranging transport to Penn State Milton S. Hershey Children’s Hospital. The closest children’s hospital was an hour away, but Ellie was being sent to a different children’s hospital, because the pediatric cardiology department there was “in flux.” Around 6:30 that night, a helicopter arrived to fly Ellie to Hershey. Fortunately, Life Lion transport does allow parents to fly if the pilot approves, so Ellie’s mom rode along with Ellie while her father made the 2 and ½ hour drive by car. Arrangements were made for Ellie’s brother Malcolm to stay with his grandparents, while his parents stayed with his sister in Hershey.

When Ellie got to Hershey, she was first examined by a Pediatric Cardiology Fellow. When Ellie’s mom asked her what the worst case scenario was, the reply back was “transplant.” There was some confusion when Ellie arrived, because the doctors there could not believe how good she looked in comparison to what the echocardiogram on the disc that was sent with her revealed. There was even some discussion that perhaps the wrong disc was sent with her. One of the numbers that becomes so important to a parent whose child has cardiomyopathy is called an Ejection Fraction (EF). The EF measures the volume fraction of blood that is pumped out of the ventricle in the heart, what percentage of blood is ejected. A normal EF range is anywhere from 55 – 75%. Ellie’s EF was 8%. Ellie was admitted to the PICU and a course of treatments was begun to help ease the function on her heart. Her parents were told she had dilated cardiomyopathy.

At the time of diagnosis, the doctors were not sure what caused the cardiomyopathy. We were told it could be a viral cause or a genetic cause. While she did have some tests come back positive for viruses, the viruses that she had were not known to cause cardiomyopathy. There was no family history of heart disease. Ellie’s parents opted to have genetic testing done to see if there was a genetic cause for her disease, knowing that no matter the cause the course of treatment would remain the same. Her parents were also told the 1/3 ratios for pediatric dilated cardiomyopathy: 1/3 of kids improve, 1/3 of kids stay the same but stable with medication, and 1/3 of kids deteriorate (needing a transplant or dying). There was no point at which you would know which third Ellie would fall into.

Ellie spent two weeks in PICU. She responded well to the medication that she was being given. Her heart by this point had enlarged to the size of an adult’s heart. It had grown so large it collapsed her left lung. There had been some talk of transferring her to Children’s Hospital of Pittsburgh, but she was improving on medication so it was deemed not necessary.

On December 23, 2011, on her father’s 46th birthday, Ellie was discharged to come home. Her parents were thrilled to have her home for Christmas and their family reunited. Each Wednesday, her parents took her to her cardiology appointments at the outpatient clinic located two hours away from their home. Ellie’s EF improved to about 15% from the original 8%.

Ellie continued to be stable. In January 2012, she was fitted with a NJ tube to aid in supplementing her nutrition, because she still was not a great eater. She started refusing to nurse altogether while in the hospital. Towards the tail end of February, Ellie caught RSV, which led to pneumonia, but she still remained at home, stable.

In April, her stability ended. She was hospitalized to adjust medication April 11-15th. On April 20, 2012, her home nurse noticed that she had a funny, but fleeting, episode. To this day, Ellie’s mother doesn’t know what exactly it was that triggered her home nurse’s concern, because by the time Ellie’s father called to tell her they were in the emergency room and they were sending Ellie back to Hershey, Ellie seemingly was fine. Ellie’s mom could hear her chattering away in the background. This time Ellie’s dad flew with her to Hershey, while her mom watched the helicopter fly off from her office’s parking lot. When Ellie arrived at Hershey, the joke of the staff was that she was just as fine as the day that she had been discharged just a few days prior and that all she wanted was a helicopter ride to come and see her favorite nurses and doctors.

By the next day, Ellie had another episode and was deemed not fine. The same cardiology fellow that had seen Ellie on her first trip to Hershey in December now was telling her parents that transplant was her best course of treatment. Hershey was able to stabilize Ellie again, so much so that the decision was made NOT to do a hospital to hospital transport to Children’s Hospital of Pittsburgh for the transplant evaluation. Discharge was tentatively scheduled for either April 25 or 26th. Ellie’s mom was given the number for the transplant team and had been told to call them back when she was being discharged, so that they could get Ellie in for an evaluation within 72 hours of discharge. Ellie never made it to discharge.

The night of the 24th, Ellie’s parents left her around 10:30 PM to go to the Ronald McDonald house to sleep, anticipating they would go home the next day. Ellie was doing really well; she was wide awake. It was the first time her parents left the hospital without her falling asleep first. It was the last time they would see her conscious. At 2:30 AM, they were awoken by a telephone call from the hospital. Ellie was being transferred back to the PICU and both of them were instructed to come right away. By the time they got to the hospital, CPR was already being performed on Ellie. They met her nurse in the hallway. There were tears in her eyes. Ellie’s heart rate just started dropping and when the nurse went in to check her, she was unresponsive. CPR was performed on Ellie for what seemed like an eternity. Ellie was not responding. Ellie’s parents were given the choice to place her on ECMO and send her to Pittsburgh, but were told there was no guarantee that she wasn’t already severely brain damaged. Ellie’s parents made the decision to stop treatment and let her continue her journey back home to God. They were able to hold her and rock her until she passed away peacefully in her father’s arms.

Ellie’s parents have started Ellie’s Heart Foundation (www.elliesheartfoundation.org) as a way to honor their daughter, and give back to the Pediatric Cardiologists who treated her.

 

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Ellie and big brother Malcolm

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1 Comment

  1. Beth Stabley said,

    February 24, 2014 at 3:44 pm

    I had the privilege of meeting Ellie. She was our neighbor. Now we feel we have a beautiful angel in our midst.


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