Baby Health

“I Am, What they Call a ‘Loss Mum'”

Trigger warning: This article mentions infant loss.

Markie Ostler was over the moon when she found out she was expecting her second baby, just a few months after welcoming her son, Urban. She always wanted her kids to be close in age and, although it was hard going through morning sickness with an eight-month-old, she was so excited to have two little ones at home with her soon. 

However, Markie was never able to take her second baby home – a little girl named Everly.

Everly Jo - congenital heart disease
Source: Love What Matters

Everly was one of the many babies who lived her short life in hospital, battling congenital heart disease, a condition that impacts around 9 in every 1,000 live births in Australia. In 2017, the year Everly was born and died, 70 infants in Australia also lost their lives to a congenital heart defect or congenital heart disease. 

Markie shares her heartbreaking story as a way to raise awareness about congenital heart disease and work towards a cure so that no other families have to go through what she has. 

‘I am a loss mum’

Markie describes herself as by nature, “a happy person”. As she shares with Love What Matters, 

I am the person in the middle of the dance floor at a party. I am the person who is loud and speaks her mind (in a charming way, hopefully). I don’t feel like I am necessarily lying to the world. This IS who I am, but what strangers would never know about me is, I am grieving. The kind of grief that only some people will experience in this life.

My name is Markie, and I am what they call a ‘loss mom.”

Markie and her husband, Andrew found out they were having a baby girl. However, at their 20-week scan, they discovered that their little girl had some abnormalities with her heart. Their daughter would need surgery when she was born. 

[The technician] told me how sorry she was to give me the bad news. She handed me a box of tissues, and left the room. I knew something was wrong. I had felt it all along. 

I couldn’t stop my mind from wondering, ‘Will she be scared? Will she be in pain? Will she only know the inside of a hospital? Will I get to have her in this life? Will I have her for a few hours? Days? Weeks? Months? Years?

Will we have her for spring and summer next year? Will she ever wear that cute watermelon swim suit with the sunglasses and white hat?’ So many unknowns… it was overwhelming and heartbreaking.”

How could she look so perfect and be so sick?

Everly Jo Ostler was born, on November 6th. She weighed 6 pounds, 2 ounces, and was 19 inches long. 

She was stunning. She was angelic. She was absolutely perfect,” Markie recalls. “How could she look so perfect, and be so sick? How could this tiny piece of heaven have anything wrong with her?” 

Everly Jo - Congenital Heart Defect
Source: Love What Matters

Everly was diagnosed with Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, AV Canal and Pulmonary Stenosis. Her heart was so defective, that the doctor didn’t even have pictures in his binder to give us a visual.

He explained the different surgeries Everly would need throughout her life and that we should expect to spend a lot of time in the hospital. Again, we tried to mentally prepare.”

Two surgeries in three weeks

Everly had her first open-heart surgery at three days old. 

I remember crying as I walked behind her and her medical team, as they wheeled her crib and all her equipment down to the operating room. I probably kissed her a thousand times before I said goodbye.”

The surgery was considered a success, but sadly, some complications required Everly to return for a second surgery. 

Open Heart Surgery - Everly Jo
Source: Love What Matters

After the second open heart surgery, Everly seemed to do a lot better. She was able to be extubated and breathe on her own and was moved out of the NICU and into her little room where she could be with her family. 

Heart defect - Everly and Markie's story
Source: Supplied

I felt so blessed to be holding my daughter in my arms, while my son and husband played with toy cars on the ground. It had been a month since she was born, and we were finally alone with both of our kids. I felt like I could finally be Everly’s mom. I could pick her up without help from a nurse, I could bathe her, change her diaper, and snuggle her all-day long.”

Markie and Everly in hospital - congenital heart disease
Source: Love What Matters

‘Nothing else we could do’

On 9 December, just one month after Everly’s first open heart surgery, Markie, Urban and Andrew were at the hospital with Everly, singing Christmas songs and hanging up some Christmas decorations in their daughter’s hospital room.

Markie put Everly into her cot and the family went back to their house to shower and go to bed. 

Two hours after leaving their daughter, they received a phone call from the hospital.

Everly had gone into cardiac arrest and they were performing CPR on her. 

This wasn’t real. Was it? She was doing so good! We were JUST with her! No way, could she have taken such a drastic turn from the time we left the hospital.”

Markie and Andrew arrived at the hopsital to witness 20 medical professionals surrounding their daughter. One of the doctors explained what had happened.

Everly’s heart had stopped.

They had been trying to revive Everly for a solid 45 minutes.

If they were to get Everly’s heart going again, there would be a huge risk of brain damage. 

I wanted to see what was going on so I asked if I could ‘poke my head in and watch what they were doing.’ As I took the 10 steps forward to get closer to Everly’s room, even though I knew the severity of the situation, nothing could have prepared me for what I witnessed.

The exact second I stepped into my daughter’s hospital room was the very second the surgeon threw his hands in the air and said, ‘That’s it. There is nothing else we can do.’

Everly was gone. It was December 9th, 2017. Exactly one month from her first surgery. She hadn’t yet weighed 7 pounds.” 

Markie recalls the horrific moment she witnessed her daughter die and the 40 heartbroken eyes of the medical staff that stood in that room with her and realised Everly was gone. The staff hugged Markie, dressed Everly in a pair of striped pyjamas and a pink bow and let the parents say goodbye to their little girl. 

Andrew and I held her and told her how much we loved her. 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…”

Awareness of congenital heart disease

Through the sadness and grief, Markie found the strength to plan Everly’s funeral and to find gratitude in being Everly’s mum. 

I am grateful that I was given almost 5 weeks with her, when some mothers don’t even get that.

I believe with all my heart that Everly was here for a purpose, and as her mother, it is my job to fulfill it. I believe that science has come so far in the last few years to give these babies with Congenital Heart Defects a chance at life.

I have made it one of my life missions to raise awareness for congenital heart disease that takes so many of our children’s lives. 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.” 

HeartKids is a good place to start in Australia. You can find out how to support, donate and help the thousands of children who have been diagnosed with a congenital heart defect as well as the families who will receive this devastating news in the future. 

Thank you to Markie for sharing her story and for reminding us all how precious every moment with our babies really is. 

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Avatar of Jenna Galley

Born and raised in Canada, Jenna now lives in Far North Queensland with her tribe. When the mum-of-three is not writing, you can find her floating in the pool, watching princess movies, frolicking on the beach, bouncing her baby to sleep or nagging her older kids to put on their pants.

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