Saving Little Hearts - helping children with congenital heart defects

When you have children you have to learn to tell yourself all the time, that babies are not all born healthy, and whether they have 10 fingers and 10 toes is really not so important. It's all just part of parenting. If you aren't willing to accept having a child with a problem, you just shouldn't have kids because the odds are there. Most people out there aren't taught this and until you have something hit you up close in the face, you just aren't aware that it doesn't always go the way you expect. We have learned and grown from our experience so far. When you are hit with something like this, it doesn't mean we aren't good parents. It just means that we are learning about something that no parent ever expects to have to learn about.

In October 2003, my husband and I learned again that we were pregnant with our second child. We were considered a high-risk pregnancy due to the fact of me having gestational diabetes and at 18 weeks we learned our baby to be would be a little girl. This tickled both of our hearts because we already have a son. Our family would be complete.

Our daughter, Kylie, was born March 31st, 2004. She had a head full of dark hair and had blue eyes. She was 7 pounds 8.4 ounces and was 20 inches long. She was beautiful. Three months after our daughter was born we started to notice strange symptoms; swollen legs, bluish face and extremities, fussiness, and trouble breathing which I suspected might be related to a heart murmur doctors had told me was innocent. Her heart murmur was not innocent. Kylie is now 15 months old, she was diagnosed at 4 months of age with congenital heart defects called pulmonary stenosis (her case was severe at the time), where blood flow from the heart to the pulmonary artery is blocked, and atrial septal defect, a hole in the walls of her top two chambers. They are life-threatening without surgery. Kylie had intervention done on her Pulmonary Valve back in Sept 2004. She currently has minimal blockage and the hole in her heart. She will need to take antibiotics for any surgical and dental procedure. Kylie will continue to see her team of cardiologists. So far she has been through numerous blood tests, x-rays, hospital stays, doctors visits and ER visits. She has Sensory Integration Dysfunction and other developmental delays. She receives OT every week for once a week and she receives PT every other week for once a week.

Over the following months, before we met the cardiologist that would do Kylies procedure, we have had follow-up visits, but other than that we had no contact with anyone in the "world of CHD". When I searched online for information, I was overwhelmed by the number of surgeries & interventions so many children had experienced, and the number of pages dedicated to "heart angels". It was just too much for me and husband, Justin told me to stop looking at these. I needed to find someone to talk to and several support groups I found were in other states. I continued and still continue to talk to other "heart parents" in other states. Myself and another heart mom, Holly, recently became the 7th Chapter for Mended Little Hearts. The group is called Mended Little Hearts Of South Eastern Pennsylvania, we meet every other month for meetings at their local hospital to help other parents.