Meet Emylie

 Emylie was born with Spina Bifida, was born with Myelomeningocele Spina Bifida, a permanently disabling birth defect. Spina Bifida occurs when the spin of the baby fails to close during the first months of pregnancy. She was also born with Arnold Chiari II Malformation and hydrocephalus. The Arnold Chiari is a malformation of the brain disturbing the natural flow of spinal fluid and causes hydrocephalus, "water on the brain". 

Within 24 hours of Emylie’s birth she had surgery to close the opening in her back. She slept on her stomach for the first two weeks of her life, having to wear her diapers backwards. Two weeks later, Emylie got her stitches out of her back and the next day went in for surgery to get her shunt to help with the hydrocephalus. (The shunt drains the extra fluid in the ventricles of the brain down into her abdominal cavity).

When Emylie was four weeks old she woke up and seemed to be having trouble breathing and sounded congested. A visit to the doctor determined that she probably had a virus and needed to be admitted. Emylie took her first ambulance ride to Primary Children's Medical Center. Emylie spent the day in the ER, and had episodes where the nurse had to "bag" her because she started to go blue. They did many different tests and as all of them came back normal...the doctors agreed she must have a virus but figured it would be best to admit her so she could be monitored more closely. A couple hours after getting in a room, Emylie stopped breathing and a 'code blue' was called. Again they bagged Emylie to force air into her lungs; while they revived her a nurse noticed she did not have a gag reflex. The medical staff decided to transfer Emylie to the Pediatric Intensive Care Unit where she could be monitored more closely and be put on high flow oxygen. The high flow oxygen wasn't sufficient enough, the next step was c-pap which didn't work either and by morning she was intubated. The doctors were not sure what was wrong. After a couple days of additional tests the doctors found out Emylie had pressure on her cranial nerves,  a very rare symptom of the Arnold Chiari Malformation and that she also had another rare abnormality, a syrinx. The pressure on her nerves caused Emylie to lose her cough, gag and swallow reflexes and central apnea. We were told she would need a tracheostomy and feeding tube to live.

At 5 weeks old Emylie got her trach, feeding tube and ventilator. Between hospital stays, medical procedures and doctor appointments, Emylie has spent a lot of time at Primary Children’s. She has had over fifteen surgeries, numerous MRI’s and CT-scans, chest x-rays, many procedures and tests, hospital stays from common illnesses that at times were life threatening.

Emylie is 8 years old. She has worked hard and is able to spend as much awake time as she likes off the ventilator, breathing on her own. She requires constant care with nurses who care for her at night while her parents sleep and who also attend school with her. Emylie learned to army crawl, is able to sit independently, has taken 20-30 steps with her walker. Early on Emylie learned over a 100 signs to communicate but over time that faded as she miraculously learned to make sounds past her trach and today is able to talk, something doctors said wouldn't be possible.  Emylie got her first powered wheelchair at age 2. Today Emylie has a manual wheelchair as well as her powered wheelchair. She uses her powered wheelchair the majority of the time, going to school and getting around the house.

Emylie loves to play with her family, go for walks, read books, play games on the computer, playing Barbies, all things imaginative like house, school, etc. Playing with her big sister Elizabeth and her friends (this includes some of her nurses) are always a highlight.  She enjoys watching Bewitched episodes, Studio C, Brooklyn and Bailey, and clips of the Ellen show.  She also enjoys a good movie, Annie being one of her favorites and more recently Moana.  

Emylie has an easy going personality, is a tender-heart and is very loving. Her smile melts your heart.  Emylie’s personality has helped create the calm among her challenges and daily life. Since birth she has conquered each day with grace and beauty. Emylie is a miracle. We know she is watched over by angels and are so grateful to have her in our family. We are all better for having her in our lives!