Madeline’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Madeline’s father, Tim, will share her story.

When Madeline was born in May of 2005, my wife, Bridgette, and I used to comment on how lucky we were that we had such a healthy baby girl. Many of our friends also had young children and they were constantly going to the doctor for the usual childhood ailments — colds, strep throat, GI issues, etc.  However, Madeline was never sick — the only time we had to take her to the doctor was for the normal early child checkups and shots.  

Looking back on those first few months, we probably should have “knocked on wood” when we talked about Madeline’s health. 

Madeline_3.jpgOn a sunny Sunday afternoon in March, 2006, while on a walk in our neighborhood, a dog ran up to a chain link fence and barked which, in turn, startled Madeline — she began crying really hard and then appeared to pass out. Alarmed, we called our pediatrician’s office and were advised to bring her in the next day. At the appointment, Madeline became so agitated that she passed out again and was transported by ambulance to Le Bonheur Children’s Hospital.

After several hours in the emergency department we discovered that Madeline was, in fact, a very sick little girl. She had four previously undiagnosed congenital heart defects – an atrial septal defect (ASD), pulmonary hypertension, Wolff-Parkinson-White (WPW) syndrome, and mitral valve stenosis. Our life was literally turned upside down in a matter of hours — we went from having what we thought was a very healthy baby girl to having a child that we were not sure would survive the next few months much less into adulthood. 

Madeline underwent open-heart surgery at Le Bonheur in March, 2006, and has remained a patient on Le Bonheur’s cardiac service ever since. She has seen a number of specialists over the years and has had many follow-up procedures here at Le Bonheur including echocardiograms, caths, EKG’s, etc. We also travelled to Boston Children’s Hospital in 2006 for a specialized procedure for Madeline.

We are very fortunate that we have a world class children’s hospital in our city and that I have excellent health care benefits through my employer. We realize that many families of CHD children are not as fortunate as we are both from a resource standpoint and a location standpoint — many families have to travel long distances to get adequate care for their children. Without this world class, local medical care and these resources, we know that Madeline may not have grown up to be the happy, healthy 11-year-old that she is today.

Having this kind of care available to all families is so important. We were surprised to learn — as are most people that we share this with — that more children are affected by CHD than all childhood cancers combined. Again, we were very fortunate to have excellent employer provided health insurance, but we know this is not the case for many, if not most, families. This is why programs such as Medicaid, the Children’s Health Insurance Program (CHIP) and other public health insurance programs are so crucial to ensuring that all CHD children have a fighting to chance to live happy, healthy and active lives like the one our little girl has been so fortunate to enjoy.

More information about congenital heart defects can be found at the Center for Disease Control & Prevention (CDC).

Don’t forget to check out other first-person accounts about kids with CHD on our blog page.

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