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On February 10, 2022, my husband and I were told that our 13-week old baby had a 5% chance of survival due to a cystic hygroma, a build-up of fluid most often found on the back of a baby’s neck in-utero.
Cystic hygromas are frequently associated with chromosomal abnormalities, and since we lost a baby with a cystic hygroma back in 2019, it felt like a horrible nightmare all over again. We were given a very grim prognosis and were immediately told abortion was an option, but we knew this baby had infinite value regardless of possible abnormalities.
We were sent to a high-risk doctor who was an absolute light throughout my entire pregnancy. With 12 children of his own, he understood the value of our baby and never once treated our situation as a lost cause. He scheduled constant ultrasounds to check on our baby’s well-being, and always let us know that he was available at all times for us.
We soon found out that our 3 girls were going to have a little brother, but we also found out that our little guy had a congenital heart defect called double-outlet right ventricle, as well as some possible brain malformations. Since we opted-out of an amniocentesis or any invasive genetic testing, we weren’t quite sure what kind of diagnosis our baby Edmund would have or whether he would survive the pregnancy, let alone the birth itself.
Photo courtesy of Anna Denny
On July 26, 2022, we welcomed Edmund David to the world at 4lbs 10oz, tiny but mighty, with an entire team of doctors and nurses there ready to do whatever they could for him.
After an emergency baptism given by my husband, the NICU team whisked Edmund off to stabilize him. He needed some assistance with breathing and was given an NG tube for feedings. Thankfully, his heart was stable despite his double outlet right ventricle, and the brain malformation that they were afraid of in-utero was not as severe as they had originally thought.
Three days after birth, he was diagnosed with Hirschsprung’s disease, an intestinal disorder, and had colostomy surgery at one week old to correct it. Due to the number of complexities that he had, we had some genetic testing done and found out that Edmund has an unbalanced translocation; he has an extra portion chromosome 7 and a partial deletion of chromosome 10. These unbalanced translocations, especially ones with a larger deletion like Edmund’s, are very rare and usually quite severe. Even his geneticist was surprised at how well he was doing given his specific chromosomal condition.
And while Edmund definitely has some obstacles, he came home after a month in the NICU on absolutely zero medications.
Edmund continued to thrive after coming home from the NICU for those next two months, but in November 2022, when he was around 4 months old, he came down with RSV, respiratory syncytial virus, and took a turn for the worse very quickly. He was hospitalized for three weeks in the PICU, spending two of those weeks on a ventilator because his lungs were so sick. On his worst day we were preparing ourselves with the possibility of saying goodbye to him when he spontaneously made a miraculous recovery and once again defeated the odds that were given to him. He came back home with us on December 8th and has continued to thrive ever since.
Photo courtesy of Anna Denny
This past March, Edmund underwent mandibular distraction surgery to move his jaw forward and help with his breathing, and now we are preparing for his heart surgery this coming summer.
And here we are at 9 months old and Edmund continues to be such a fighter! Through all of the trials that he has endured, he never fails to have a smile on his face and find joy in even the smallest things in life.
I feel blessed that God instilled in my husband and me the value of life no matter what sacrifices may come with it, and I’m so thankful that we were not scared into thinking that abortion was our only option. God has allowed Edmund to be a source of inspiration to not only us, but also to his medical team and all of those who have followed on his journey.
I hope that Edmund’s beautiful smile will show others that medical conditions do not mean “sorrow” and that joy can be found in all life, whether “healthy” or not.
