Welcome! Our son, Elijah Frederick Craig, was born on 8/04/12 in Reston, VA. He was diagnosed (post birth) with Trisomy 21 Down Syndrome with a large VSD and small ASD (holes) in his heart. His parents were told to expect open heart surgery within the first year of life.
The first 4 months of life for Eli consisted of weekly doctor visits, health screenings and physical therapy. For his parents, there was all the worry that comes with researching potential health issues with DS children, his lack of weight gain due to his heart condition, and the unknown future.
Eli and his parents were very fortunate to find the best pediatric cardiologist in the world, Dr. Thomas J. Hougen in Arlington, VA. Dr. Hougen performed all tests and examinations himself and made not only Eli very comfortable, but his parents. When the time came to decide on where the open-heart surgery would be performed, Dr, Hougen provided the options and then was able to get Eli scheduled at Children’s Hospital of Philadelphia (CHOP).
Eli was going to spend his first Christmas in the hospital at CHOP. Eli’s family arrived in Philadelphia the day before the surgery obviously very scared. The morning of the surgery Eli was his normal self, constantly smiling at his family, nurses, doctors and anyone else that that glanced his way…..if he only knew what he was in for. The Craig’s were very lucky to have many family members make the trip to Philadelphia; the support was amazing and very much needed.
The surgery took a few hours and Eli was placed in ICU to recover. There had never been a day in the life of his parents that was more stressful or painful. Seeing all the babies in ICU was very discouraging at first. That quickly changed as Eli’s family began speaking with the doctors, seeing the constant attention provided by the nurses, and meeting other families. The Children’s Hospital of Philadelphia is an amazing place…..it is truly amazing how they can transform a place where there is so much despair, worry, concern into a place beaming with life and hope.
Eli’s father had come up with the idea of Eli’s Heart before the surgery, but the time spent at CHOP confirmed the need. There was a family that was there from FL for a month this time and previously spent 10 months there, a family whose son was there for 4 months forcing the father to get contract work for a local construction company, and several other families that had been there for 3 months from various parts of the country. The expense just to spend a few days away from home is a burden to many families, especially considering the time away from work, medical expenses (current and future), and long term cost of supporting a child that may never be able to work.
Eli was planning on being in the hospital for up to 10 days, but was fortunate enough to be discharged only after 4. The best Christmas present ever was arriving home on Christmas Day. Since then, Eli has gone from 7lbs on surgery day to 17lbs just 10 weeks later. Eli loves to smile, loves to eat, loves to touch people’s faces, loves to pick out his pajamas at night, loves to watch people and loves being the little boy that means the world to his parents.