A mother has opened up about the pain of burying her one-month-old daughter who was born with four heart defects.
Markie Ostler, 27, was overjoyed when she found out she was pregnant with her second child just months after she and her husband Andrew had welcomed their son, Urban, in July of 2016.
Halfway through the pregnancy doctors informed the young parents that their unborn daughter had four heart defects, giving her a very slim chance of survival.
When Everly Jo was born on November 6, 2017, doctors went straight to work on the little girl’s heart, putting her through two open heart surgeries before she was even two weeks old – but on December 9 her heart stopped and doctors were unable to revive her.
Three months later Markie describes what it was like to go from spending every possible moment showering her baby with kisses to burying her tiny casket in the ground.
Markie Ostler, 27, has described the pain of losing her one-month-old daughter Everly, who was born with four heart defects
Doctors first spotted Everly’s heart defects during a routine 20-week ultrasound scan
Markie and husband Andrew are pictured admiring their newborn at the hospital in Lehi, Utah
After growing up in a big family surrounded by kids, Markie always knew she wanted to be a mom.
As soon as her son Urban was born Markie says she instantly wanted another baby, and a few months later she learned she was pregnant again.
‘I was ecstatic,’ she told People. ‘I had always felt like I needed my kids really close together.’
During her first trimester Markie suffered intense morning sickness and on a couple occasions she had bleeding that was so heavy she thought she was having a miscarriage.
‘When my first ultrasound came around, I was so happy to see a perfect little tadpole with a very strong heartbeat,’ she wrote in a blog post for Love What Matters.
As she came up on her 20-week ultrasound scan, a thorough screening intended to catch potential problems with the fetus, the expecting mom had a bad feeling.
She was so nervous on the way to the appointment that she threw up three times.
During the appointment she FaceTimed Andrew, who was out of town on business.
When the doctors informed the couple of the baby’s heart defects, Markie’s world was shattered.
The couple are pictured with their first son Urban, one, while Markie was pregnant with Everly
Markie, Andrew and Urban are pictured at Everly’s bedside on Thanksgiving when the baby was recovering from her second surgery
‘I could sense the whole time that something was wrong,’ she said. ‘I couldn’t even handle it, because I knew the whole time. And I finally had the validation that I wasn’t crazy. Call it mother’s intuition.’
In a consultation a few weeks later, the pediatric cardiologist drew a picture of the baby’s heart to show how complicated the defects were because he didn’t have an image to serve as an example.
One in 100 babies born in the US each year have congenital heart defects, of which there are 18 identified kinds that can present in unique ways.
Everly’s heart had formed with Double Outlet Right Ventricle (DORV), atrioventricular canal, pulmonary stenosis and hypoplastic left heart syndrome.
The DORV defect meant both of her arteries were connected to the right ventricle and there wasn’t an outlet for the left ventricle, which is responsible for pumping blood to the body.
Right after she was born Everly was hooked up to multiple tubes and wires to monitor her condition. She underwent two surgeries, one at three days old and one a week later
DORV is always accompanied by a hole in the heart wall that separates right and left ventricles called an atrioventricular canal defect.
The hole allows oxygenated blood to mix with unoxygenated blood between the chambers – resulting in not enough oxygen circulated throughout the body.
Everly also had pulmonary stenosis, a narrowed valve that limits heart’s ability to pump blood to the lungs to be oxygenated.
The hypoplastic left heart syndrome meant the left side of her heart was substantially underdeveloped.
The combination of complicated defects meant Everly had a very slim chance of survival, but Markie and Andrew tried to stay positive as they prepared for what promised to be a long road ahead.
Markie is pictured right before giving birth (left) and during the c-section (right)
Right after baby Everly was delivered on November 6 the doctors brought her into treatment
Andrew is pictured meeting his newborn daughter for the first time shortly after she was born
On November 6, 2017, Everly was born by caesarean section and doctors immediately hooked her up to a machine that would trick her body into thinking it was still inside of her mother’s womb.
Two hours later, Markie finally got to hold her baby girl.
‘They handed her to me and that was the first time I held her and got to know her, she said. ‘I probably kissed her a million times. I just told her to be strong and that she’d get through this.’
Three days later Everly underwent her first open-heart surgery where doctors put in a BT shunt to help balance the blood flow between her heart and lungs.
After a week and a half she had another surgery to further improve the blood flow.
Within a few days her condition had improved enough that she could be moved to the cardiac recovery unit, and the proud parents began telling their family and friends that their little girl was on her way to being ready to come home.
For the first few days Everly was kept in an apparatus that mimicked the environment of her mother’s womb
Then on December 9 Markie and Andrew got a call from the hospital that Everly’s heart had stopped abruptly.
Right as Markie walked up to her baby’s hospital room she saw the lead surgeon throw up his hands and say: ‘That’s it. There’s nothing we can do.’
‘Immediately after the surgeon called time of death, a sea of 40 plus eyeballs shot straight at me,’ Markie wrote.
‘They all knew I had seen the exact thing no mother should ever have to see. Not only did I witness my daughter’s death, but I witnessed an entire room of medical professionals, as their hearts broke.’
Markie and Andrew held their lifeless daughter for several minutes as they said goodbye.
‘I could feel that her spirit was not in her body anymore. She wasn’t there. I am sure some moms could spend hours and hours with their child’s body, but I couldn’t. It just wasn’t her anymore,’ Markie wrote.
Everly was buried a few days later in a tiny coffin.
Three months later Markie has made it her mission to raise awareness for babies with congenital heart defects so that no mother has to go through was she did.
‘We need to find a cure for these babies, to give them a chance at life. We need to find a cure so that no other parent has to feel the pain that I do,’ she wrote.
Everly’s heart stopped on December 9, and she was buried a few days later. Andrew is pictured holding the casket
The parents smile at their son Urban at Everly’s burial in Lehi, Utah