My Nonprofit Reviews

coachk - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits


578 profile views
1 reviews

Review for Congenital Heart Defects Families Association, Kansas City, MO, USA

Rating: 5 stars  

Erin Ann Kelley was born in Nashua, NH on 11/1/93. Right before she went home from the hospital her pediatrician heard what he believed to be the murmur of a VSD and recommended that she see a pediatric cardiologist. When she was 8 days old an echocardiogram revealed a moderate sized VSD, moderate sized ASD, right sided aorta with left ligamentum, and aberrant right subclavian artery. These last two defects combined to form a complete vascular ring, encircling her trachea and esophagus. She was not showing any signs of distress so her parents took her home with instructions to watch for signs of congestive heart failure. When she was 3 weeks old a bout with RSV sent her into heart failure. She was placed on Lasix and digoxin. Over the next 11 months she had recurrent RSV, bronchiolitis, and ear infections. She was in and out of the hospital repeatedly until her first birthday. At the age of 1 it was revealed during a routine echo that the ASD had spontaneously closed. With these findings her cardiologist felt that it was worthwhile to continue to watch her to see if the VSD would also close or get smaller. He felt that the vascular ring would eventually need to be repaired but that this could wait until she was older. Over the next few years she did well. She was smaller than other children her age but could still keep up. At the age of 8 she began to have problems breathing and swallowing solid food. Her cardiologist felt this was due to the vascular ring which tightly encircled her trachea and esophagus. In May 2002 she underwent a video-assisted thoracotomy to repair the vascular ring. The doctors still believed it was premature to repair the VSD, even though it had not changed in size over the years. After the VATS procedure she seemed to have fewer problems swallowing, although her breathing was still labored when she was active. The doctors did not feel this indicated any problems and recommended continued monitoring of the VSD, which they felt would not adversely affect her over the course of her life. However, by the age of 10 her parents were not comfortable continuing this conservative treatment. Erin seemed to tire very easily. On February 6, 2004 Erin and her parents traveled to NYC to consult with cardiologists at NYU Medical Center. After an echocardiogram revealed that her heart was considerately enlarged and leakage from several valves was occurring, they recommended surgical repair. Fortunately surgeons at NYU have developed a minimally invasive open-heart procedure which eliminates the trauma of a sternal approach. Instead, an incision through the right side of the chest between the ribs allows surgeons to access the heart. This approach is both cosmetically and medically desirable. The resulting scar is cosmetically superior, infection rates are lower, and healing time is greatly reduced. During surgery it was discovered that Erin had developed a double chambered right ventricle, which is a rare and very serious complication of a VSD. Surgeons were able to repair both the VSD and the DCRV and Erin had an uneventful recovery. After surgery she developed a right bundle branch block. She also has a very small residual VSD with a leak next to the surgical patch, so she is in the small group of people who still require antibiotic prophylaxis before dental appointments and several other procedures. She was back to school 10 days post-op and went skiing just 6 weeks after surgery! Today Erin is a healthy teenager who plays field hockey and lacrosse competitively and helps me coach a youth soccer team.

I've personally experienced the results of this organization in...

An appreciation of how my daughter's defects will affect her life.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?


Role:  Client Served & Received education and support.