Sofia’s CDH Story
Sofia was born on October 6, 2021, at 35 weeks via c-section, a whole 2 minutes before her twin sister, Emma. She weighed a mere 4 lbs 8 oz. Having a twin pregnancy, I was automatically considered high-risk. I was diagnosed with IUGR (Intrauterine Growth Restriction) in the 3rd trimester, yet her Congenital Diaphragmatic Hernia (CDH) diagnosis went undetected until after birth.
When Sofia was delivered, I immediately saw her being whisked away while I heard an alarm for a “Cold Blue” (life-threatening breathing event) as they tried to get her to breathe. I couldn’t see Sofia behind all the medical personnel trying to revive her. Both my daughters were taken away to the NICU while I was taken to recovery, where a doctor came in to tell me about Sofia’s diagnosis. I couldn’t comprehend what she was saying, but the gist of it was that her left lung was an undeveloped lung, and her spleen and intestines were in her chest cavity where her lung should be because her diaphragm did not form in the womb. I was completely out of it, freshly out of surgery and on pain medications. I felt like this doctor wasn’t even speaking English. She told me that they were preparing to transfer her to the Children’s Hospital, and if I wanted to see her, I had just a few minutes.
I was taken to a NICU room with Emma hooked up to oxygen and Sofia already hooked up to oxygen and multiple other machines. I could barely see her face because of all the tape and tubes attached to her, nor could I touch her with more than a finger. The room was filled with about 15 medical personnel prepping for her transfer. Sofia was promptly transferred to Comer Children’s Hospital via ambulance, where they have a knowledgeable CDH team. I did not fully understand what was happening, and I was too scared to Google CDH because part of me didn’t even want to know. I was equally angry, sad, and confused. Emma came home 1 week later, but Sofia remained in the hospital. Since she was premature, she weighed too little for her repair surgery. There were times they tried to take her off the ventilator to see if she could breathe on her own, but she would immediately turn blue.
Surgery day finally came on November 4, when she received a successful repair surgery. A couple of weeks later, she required an additional surgery, which was less invasive. She was finally able to breathe on her own and feed from a bottle for the first time on November 21. Sofia continued to fight and grow stronger for the next month; with each visit, she had fewer tubes and fewer beeping machines surrounding her. Sofia remained in the hospital until December 21, so she is forever the best Christmas present to our family.
Today, Sofia is 3 ½ years old. She is strong-willed, vocal, stubborn, and a leader. She knows what she wants and fights to get it. I have no doubt these traits helped her fight for her recovery. Sofia’s yearly follow-up appointments and x-rays have all been met with good news, so we continuously pray it stays that way.
I found Tiny Hero a few months after she was born. I only wish I had known about this community earlier; it is a gift of knowledge and hope.
