Honoring Eden :: A Look at CDH

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Eden Olivia Coker was born on June 26, 2015. She lived for 40 glorious minutes and took at least six miraculous breaths. She impacted thousands of lives during her time here on Earth with us.

I met Eden’s mom, Megan, when we were working at a local grocery store in high school. We went to college together for a few years before Megan married Eden’s dad, Ryan, and they went off together thanks to the Army. At their first base in Alabama, Megan became a nanny to a sweetheart named Aubrey. Aubrey was a fighter. She had some serious medical issues that required lots of care, attention, and intervention.

Megan described to me recently the impact Aubrey had on her own decision to have children. Megan says that when they began praying to conceive, they “prayed that if there were sick children, they would be given to us. Eden was a quick and precise answer to that prayer.” Ryan and Megan had not been at their new base in Colorado very long when they learned they were expecting.

Ryan was away for most of the first trimester, and Megan could not shake a looming feeling that something wasn’t right. Thankfully at around 18 or 19 weeks, the couple decided to find out the gender of their little one before the anatomy scan. This was when they found out that the baby was a girl and named her Eden. There were a few weeks of joyous celebration and planning before the anatomy scan.

Honoring Eden :: A Look at CDH | Columbia SC Moms Blog

At the anatomy scan, Eden was less than cooperative. It took 90 minutes for the technician to get the images she needed. Then, she became eerily quiet and said she needed to get a doctor. Megan knew something was wrong, but had no idea what was about to unfold.

The doctor informed them that it looked like a Congenital Diaphragmatic Hernia and referred them to a specialist. The Cokers were able to meet with the specialist that day and he explained what CDH is, that it could be fatal, and referred them to another team of specialists in Colorado Springs.

Megan began scouring the internet for information about CDH. Google was the friend that connected them to communities for CDH, and the Cokers were hopeful. CDH occurs in about 1600 babies each year in the United States. Through these communities, Megan learned that there is a possibility of survival for most babies if they receive aggressive medical interventions right after birth. The Cokers held onto that hope until they met with the next team of doctors.

They were referred to a maternal fetal medicine doctor who referred them to a pediatric cardiologist. The cardiologist diagnosed Eden with a heart defect and a minor case of CDH. The plan was to repair heart defect in first days of life and complete other planned medical interventions shortly after to manage the CDH.

On March 6, the couple went in for more testing. Megan recalled walking into the room and thinking all of the doctors looked exhausted. The cardiologist explained there was no heart defect. This seemed to be exciting news.

However, the MRI showed an extremely rare case of severe bilateral CDH. Megan then describes the doctors pausing as if no one wanted to be the person to say that bilateral CDH is 100% fatal. Congenital Diaphragmatic Hernia, or CDH, refers to a condition where a hernia forms in the diaphragm allowing for abdominal organs to move into the chest cavity which inhibits lung growth. Most babies have 80-120 cubic centimeters of lung capacity. CDH babies are typically born with around 40-60 cubic centimeters. Eden’s lungs measured 4 cubic centimeters.

Megan recalls not knowing how to breath at that moment. Luckily her husband was able to ask the questions that needed to be answered.

The doctors explained there were three options. The first was to induce labor immediately. The second option was to fight the CDH with very aggressive surgical intervention as soon as Eden was born. The third was palliative care which meant Eden would be delivered, given pain management medication, and allowed to remain with her family to be loved on for how ever long she would be in this Earthly world. The team told Megan and Ryan to take their time making a decision and planned a follow-up to make sure there was no lung capacity growth at 34 weeks.

Honoring Eden :: A Look at CDH | Columbia SC Moms Blog

Megan and Ryan returned home late that night and set a meeting with the military chaplain to help make a decision they could live with for the rest of their lives. The Cokers chose to carry Eden to term and decline any surgical procedures. After meeting with many doctors, they felt Eden’s life should be lived in the comfort of her family surrounded by nothing but love.

Megan chose to share Eden’s story through her own blog and social media pages. The family did receive some backlash for not continuing to pray that Eden’s life would be saved either through medical or divine intervention. However to this day, the Cokers are quick to remind everyone that Eden was the miracle. They got to spend almost 10 months loving her on the Earth, and they will get to spend a lifetime loving her in Heaven. There is no need for any other miracle.

Megan began to write more and more letters to Eden that would be cherished after her passing. The extended family flew to Colorado for Megan to be induced. She labored for 24 hours and pushed for three hours. She describes Eden’s birthday as a “happy day.” Eden was able to be held and kissed by her parents, grandparents, aunts and uncles. Her parents read to her, hummed a song to her, and dedicated her back to the Lord.

Eden took at least six big breaths during the 40 minutes she was with her family. Megan said, “she let us know that she was not the one to intervene with. She was peaceful and calm.”

The family was able to spend 24 hours with her. She was then flown to South Carolina on the same flight as her mom and dad. Over 400 people attended her viewing including me. Megan describes her viewing like this:

The best part was a girl that I didn’t know. She ran up to me and she squeezed me and she started boohooing. She was about the same age as me. To this day I have no idea what she said or who she was.

The fact that Eden made such an impact on so many people is still awe inspiring to her family. Eden is resting in her parents’ hometown of Sumter, South Carolina. Though her parents are now stationed in Washington, her grandmother visits her almost daily to make sure she is well taken care of here on the East Coast.

Megan knows Eden’s story is far from over. Both parents continue to write and speak out to raise awareness for CDH. Hopefully there will one day be a medical intervention that will save the lives of other babies like Eden. Until then, Megan says, “My connection with her has been writing and telling her story and sharing it with other people.”

Honoring Eden :: A Look at CDH | Columbia SC Moms Blog

Since Eden’s birth, Megan and Ryan have become the parents to two little boys born into Heaven. While Errol and Mason did not have the same diagnosis as their sister, they were still a blessing to a family who loved them for the time they were able to be here and will continue to love them for an eternity in spirit.   

If you are interested in knowing more about CDH, please visit the CHERUBS. You can also raise awareness on March 31 for CDH Awareness Day or during CDH Awareness Month in April by wearing teal and spreading information about Eden and other cherubs like her.

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Lacie Hooks
Lacie is a true God-fearing Southern woman. She appreciates small town living. As an alumni of the University of South Carolina and Columbia College, she believes in the absolute power of education. Lacie works as an elementary school teacher. She received her Masters of Education from Columbia College in 2017. Lacie married a true Southern gentleman. They met in 2010 and married in 2014. Their family grew in 2015 with the birth of their only biological son, Gatlin. The family of three lived happily until 2017. The Lord decided then that the family should open their home to those in need as foster parents. The home is ready to receive those blessings now. In her spare time, Lacie enjoys reading so much so that Gatlin would have been named after the wonderful Harper Lee if he had been a girl. Prison documentaries are a vice that her husband does not understand. Finally, Lacie enjoys spending time with her five siblings and their amazing children

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