Featured cherub of the week is CDH survivor, Evelyn Sanchez. Evelyn is the daughter of Marissa and Nick Sanchez. Marissa is our CDH International Colorado Ambassador and had this to share about her daughter:
“We waited with baited breath at the anatomy scan, which took much longer than anticipated. Our second child (a baby girl!) had just been diagnosed with Left-sided CDH. Her stomach, intestines, spleen and part of her liver had been found in her chest cavity. Immediately after telling us the name of her condition, the doctors curtly gave us the prognosis: a 10% chance of making it to the end of term. They recommended termination of the pregnancy. We were absolutely devastated, angry and confused. The doctors didn’t even explain what CDH was before handing us a death sentence. We went home in tears but immediately turned to prayer and began researching CDH on the internet. It was then that we found Cherubs. We spent days talking to other parents on the forums, learning more about the condition and requesting an information packet. We knew at the anatomy scan that we would always fight for our daughter’s life, so we decided to receive a second opinion at Children’s Hospital Colorado after a recommendation on the Cherubs website. We were amazed to find an entire team of doctors dedicated to CDH! After an MRI and some other tests – as well as an amniocentesis- the doctors at Children’s Hospital (including Jason Gien, and Dr. John Kinsella) gave our daughter a 90% chance of making it to birth and a 50% chance of survival after birth. Though the odds were stacked against us, we continued to fight for her, getting weekly non-stress tests and ultrasounds. A plan was set to induce 2 weeks early at 38 weeks and for mom to receive steroid shots to help with her lung development.
Evelyn Mireya Sanchez was born on December 5, 2012, at 38 weeks. A team of doctors from Children’s Hospital were present at the birth and stood by to intubate her. She proved to be incredibly hard to intubate and after a minute and a half of struggling to get the tube in, Dr. Gien miraculously arrived, pushed all of the other doctors out of the way and intubated her. She was then transported from University Hospital to Children’s Hospital next door via flight for life ambulance. She was immediately placed in a double room in the NICU and her machines for life support filled the entire space. She had picc lines in all of her extremities along with her belly button. Within the first 3 days, she suffered a pulmonary embolism and a fever. Things were very touch and go and we almost lost her several times, but she proved to everyone that she had a will to live. On her 8th day of life she was stable enough for Dr. Kinsella to perform her diaphragmatic hernia repair. Surgery went well, and after a week of recovery, Mom got to hold her for the first time at 14 days old. She did very well after surgery and was removed from the ventilator and put on oxygen at 20 days old. After many weeks learning how to eat and healing from surgery, Evelyn was finally allowed to go home at 7.5 weeks old (on oxygen and with an NG feeding tube).
Mom was pumping and feeding her through the NG tube, but after a few months it became necessary to switch her to formula. After this switch, Evelyn began throwing up and suffering severe gastrointestinal issues. We met with 7 different GI specialists who gradually put her on more and more hypoallergenic formula. When she was 7 months old, she began suffering from gastrointestinal bleeds and vomiting blood. We rushed her to the emergency room where she was admitted for 4 months. Endoscopies and colonoscopies showed sores in her digestive tract from her esophagus to her stomach, through her intestines and all the way to her colon. Many tests for allergies and immune diseases, along with bacterial infections, etc. were performed but with no conclusive results. She was not allowed to eat for weeks at a time to heal her gut, which was heart wrenching. She was living on TPN and lipids given to her through a picc line, and small sips of plain Pedialyte. Her condition continued to deteriorate and after 4 months in the hospital on TPN and Lipids, her body began to show signs of complications from extended use of TPN. We were told that there was nothing left to be done and that we would need to think about comfort care. We were absolutely devastated. She was our beautiful girl, so full of life, always with a smile on her face despite all that she was going through. Dad was able to get her discharged from the hospital to be home for Christmas and after a blessing, over the next few days her health began to improve. We were supposed to go back to the hospital for comfort care, but instead we showed up at the hospital with a completely healthy 1 year old. We can’t explain her recovery, it was a Christmas Miracle! Today she is a typical 6 year old girl. She loves dancing, kindergarten and making new friends. We are so grateful to the doctors at Children’s Hospital for all that they have done to help our daughter, and for Cherubs for being a huge support system and resource.”