Faith, born 2008
Faith, the last of six children, was born on August 8, 2005. My husband and I found out when I was pregnant that she had a heart defect. While I was pregnant, it was misdiagnosed but nonetheless, she still had one. Faith was born at 36 weeks with a Double Inlet Left Ventricle (DILV) with Pulmonary Stenosis (PS),TGA and a bulboventricular foreman.
Faith had her first surgery on January 18, 2006 which was her bi-directional Glenn. It certainly wasn't easy to see her in that situation but it was necessary to keep her alive Faith did well after her surgery but ran into a host of other issues during the year. For starters, she ended up getting Lyme disease which made her pretty miserable for a while. Then we noticed Faith a severe case of sleep apnea. After a brain MRI at Boston Children's, she was diagnosed with Chiari Malformation. While hers is only a 1, it is still more than we were prepared to handle. Luckily so far, however, it doesn't seem to impact anything else except her sleep.
On March 12, 2007 Faith was admitted again to have a cardiac catheterization to help raise her oxygen levels. At that time, she was hovering around 77%. After they did the procedure, they found she only had one blood vessel that needed a coil and the inevitable was upon us.
Faith was back in on July 12th for her Fontan procedure. The surgery was performed earlier than anticipated due to her low oxygen levels, however, the day of surgery, they got an 84 reading. Faith had a more difficult time during her hospital stay this time. She ended up having to stay on the pumps longer due to air that had formed around her left lung. She also was older and realized she really didn't enjoy the hospital staff no matter how much they smiled at her. At times, she even glared at us with disgust. After Faith's surgery, it was disappointing to see her oxygen levels only to go to about 80% but after her body adjusted, she got up to 92% nine months after her surgery.
Faith is blessed to be in a large family that cares for her so much. Faith's older sister, Amanda, is very close to her and had written a short story telling of how her baby sister's heart defect has impacted her life. She wrote it for school but reading it was very enlightening to us on how this doesn't only affect the patient and parents, but everyone that loves our little heart babies. Faith is doing well and we are looking forward to a much more active and healthy summer this year.
Story by Faith's mother, Catharine - NEW HAMPSHIRE