Pick them up and put them down!

It's a proven fact that exercise improves your fitness level. If you have a CHD, that's important: Strengthening a damaged heart can make it work better, function longer, and be more resistant to shock if you happen to have a health crisis. In short, exercise can extend your life.

For any exercise to be effective, your heart and respiratory rate have to increase - safely! So be sure to consult your doctor before beginning any exercise program. If your doctor clears you for exercise, be sure to ask if he/she recommends a certain type of exercise. Be sure to start slowly and build your strength.

Music can make your exercise routine go by faster and keep you going when your body says "Wait a minute!" You also tend to move with the beat: faster music makes you work harder. Don't believe me? American Pie is a classic song, but just try to exercise to it. 500 Miles by The Proclaimers works much better!

This website will sell you "workout music" with faster or slower beats, depending on how intense you want to exercise. Or you can download your favorite MP3's. Either way, if your doctor approves, get out and get moving!

CHD and Neurodevelopmental Risks

Risk of attention and behavior problems for kids with CHD
Children's Hospital of Philadelphia
Public Release, 7 April 2008

Schoolchildren who required surgery as infants for congenital heart disease (CHD) run a significant risk of having problems with inattention and hyperactivity, and often require remedial services in school. “These children are at risk for academic and behavior problems, and our findings reinforce how important it is to provide them with ongoing follow-up and neurodevelopmental screening,” said study leader Amanda J. Shillingford, M.D., a pediatric cardiologist at The Children’s Hospital of Philadelphia.

The researchers, who reported their findings in the April issue of Pediatrics, studied a group of 109 children, aged five to 10, who had undergone cardiac surgery for complex congenital heart disease at Children’s Hospital when they were newborns. Of that group, 53 children--nearly half of them--were receiving remedial services at school, and 15 percent were in special education classrooms.

Based on questionnaire responses from their parents and teachers, although the majority of the children with CHD scored in the normal range, the rates of high-risk scores for inattention and hyperactivity were three to four times greater than those found in the general population.

Previous studies at The Children’s Hospital of Philadelphia and other centers found that school-aged children with complex CHD tended to have normal cognitive abilities but were at risk for problems in visual and motor skills, as well as impairments in speech, language and executive functioning (executive functioning refers to capacities for attention, planning, decision-making and problem-solving).

“As survival rates have improved,” said Shillingford, “the important longer-term issue is quality of life for patients and their families as they reach school age and beyond. We hope our findings will help raise awareness among parents, teachers and physicians about the children’s risk of neurodevelopmental problems.” Shillingford added that a next step for researchers is to conduct larger, multicenter studies, with more formalized diagnostic tools, and to develop formalized follow-up protocols for these children. Such follow-up programs are currently being designed at Children’s Hospital.

7 For 7: How CHD Changed My Life

This post is a little personal, but something I was inclined to write after the last few weeks of complete submersion in the CHD community. I found that the very same things that have changed so drastically in my outlooks and life are shared by many families with CHD. Here are the top seven things that came to mind as I thought of how our lives have changed forever.

1. Realizing What a Gift Life Is. The miracle of life is more poignant than ever before. As an emotionally-reserved kind of person, I'm amazed at the overwhelming emotions I have when it comes to babies. I cry in part out of joy, in part out of longing for those moments that were lost with my daughter, part in sadness over the babies I know that were lost, and mostly over the miracle that I see. Life, simply, has so much more meaning to me.
   
2. My "Uninsurable" One. I've unfortunately learned the hard way what the real status of health care in America is, and it infuriates, sickens and saddens me simultaneously. When my daughter was first born and crisis hit, we were left with several six-digit "balance" billings that took over 213 hours to get down to "manageable" sums. When my husband switched jobs, we found out our daughter was "uninsurable" from an endless parade of providers.
3. Learning to Let it Be. With my first child, I spent hours upon hours in instructive play, and when my second child came out with a "defect," was determined to do the same to keep her at or ahead of the milestone charts. Instead, her unique personality and the obstacles she's overcome have made me stop and relax and enjoy those moments of play for the sake of play, snuggling without talking, and letting the house go to hell in a handbasket while we chase each other in circles.
4. Financial Challenges. I hate talking money, and frankly, have felt ashamed at the toll the entire experience has taken upon our family's finances. Like I should have somehow been prepared, or been able to avoid the impact it's had. The co-insurance costs, counter billing, hotel or hostel stays and travel costs can add up. Not to mention the medication, doctor and specialist co-pays, loss of income from extra time off of work, extra child care... the list goes on and on. It's incredibly hard to talk about but needs to be said. We are lucky - we've taken a hit, but we're surviving. Other families have lost everything and are fighting not only for their child's life, but for their family's ability to survive financially. Every CHD family I have met has been affected financially - whether upper or lower class, or somewhere in between! It's not something you can plan for or prevent.
   
5. Learning How Tough Marriage Can Be. My husband and I have definitely had our ups and downs since we got married 12 years ago, but nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from your spouse than ever. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on her sibling), and you lose a lot of yourself in it. Having a partner beside you going through the same thing, but with differing ways of handling things (because none of us are truly alike in how we deal with stress and grief!) is both wonderful and incredibly hard.
   
6. Smiling at Tantrums. I used to roll my eyes at parents in stores that had tantruming children, thinking how my child would never behave that way thanks to my parenting prowess. Someone upstairs wanted to take me off my high-horse, and did so with my second child, who has CHD. My daughter has some insanely intense tantrums, which worry me (developmentally) but also reassure me. I'm thankful her heart is strong enough to support them. I'm thankful I get to hear her voice. Most of all, I am thankful for her life. Now I'm the one being glared at, and I often smile, knowing that that person has no idea that this screaming banshee in my grocery cart is an ultimate survivor.
7. A New Perspective. My friend Christy, mom to Sydney (see the 7 faces entry 2 days earlier), wrote, "Having a child with CHD had totally changed my prespective in life. I do not sweat the small stuff like I used to. I have learned to cherish the moments with my children. For the smiles...drools....tears....temper tantrums....arguments....laughs....for their strength....courage.... and most of all, for how much they teach me about life and unconditional love." Well said, Christy, and ditto to that!!