Jeffrey Cameron was only 10 days old when he was diagnosed with Hypoplastic Left Heart Syndrome (“HLHS”), a type of congenital heart defect (“CHD”). Their doctor gave the Cameron family three options - a heart transplant, a series of open-heart surgeries or what is known as “comfort care.” For Jeffrey’s mother, Lenore, this last option was essentially “do nothing and let your child die.” Based on the doctor’s discouraging prognosis for their son, the Camerons brought their son home from the hospital for comfort care. “We were under the impression after hearing from the doctors that even if we gave him a chance with the staged surgery, his chances of surviving all of them weren't good and if he did, he wouldn't have a quality of life.” Lenore explained, “We were given little to no hope of him making it.” One out of every 100 children is born with a congenital heart defect, making this condition the number one birth defect in the country. Despite the apparent regularity of this condition, Lenore was largely unsuccessful in her attempts to find local support groups for herself and others with CHD children. So Lenore decided to organize an outing at a Chuck E. Cheese restaurant in Massachusetts with other families she had found. “It met my needs,” Lenore said, “and afterwards I thought, we need something. There isn’t anything else out there. So Little Hearts was born in January 1998.” Little Hearts, Inc. was a way for Lenore to offer support and hope to other parents in her situation. Founded in Cromwell, the organization currently has over 1,200 members across the country and the world. Families across the globe are able to connect and find support for their CHD children through their web site,
www.littlehearts.org. The site offers both services and resources for these parents. “We do have a lot of information on our web site.” Lenore said. “What’s on there is really just to share the hope with others. We have families in other countries today that have members; we have an email support group. We have a mom from Kuwait. We have a mom from Ireland. Recently, we just got a mom from India. And so they can subscribe to our email support group. If they have a question about their kid, they can just post it. It’s not like going to a meeting. You can just go on the computer and it’s just so much easier.” In addition to the email group, Little Hearts offers a variety of support services and special events to educate others and raise awareness about CHDs. “Parent matching” allows mothers and fathers to connect with a network of other parents whose child has the same or a similar heart defect. Conversely, the “Parents Helping Parents” program allows an “experienced” parent to offer support to others whose child is currently undergoing surgery or treatment. “What works for some parents,” Lenore related, “is that we get membership forms from parents’ older children who don’t need the support but they’re sending in a membership form because they want to help another member. So all they do is check off on the membership form ‘Give out my name for a match’ and maybe that’s all that they want. And so it’s really helpful.” Little Hearts also holds an annual picnic the first Sunday of June, where the kids and their families can enjoy kayaking, moonwalks, or face-painting and balloon-making clowns. The 2005 picnic was held at Winding Trails in Farmington. “Last year there were something like 120 families and that’s about 300 or 400 people.” Lenore stated, “We do piñatas, the kids just love that. The kids just get so excited. They can’t wait to get some of the candy. We have this one little boy, who I think said it best. He comes from New York and he said to his parents, ‘Mom, I’m so glad I was born with a heart defect because if I wasn’t I couldn’t have come to this picnic.’ And this kid went through a lot. He almost didn’t make it. ” Another annual tradition is a writing campaign to the governor to request that February 14 be declared Congenital Heart Defect Awareness Day. “Parents, when they go through this,” Lenore explained, “they want to do something to help and this is one way of just sending in a letter. They get a proclamation [from the governor]. I just had one mom from Maine who wants to get the proclamation. She works at a hospital and she wants to set up a display of CHD day. She can display the proclamation and just bring awareness to congenital heart defects because a lot of people aren’t aware of it. You don’t become aware of these things until it happens to you.” Most kinds of CHDs can be detected in a pre-natal exam through an echocardiogram (a type of ultrasound that takes pictures of the heart using sound waves). A specialist, rather than the obstetrician, typically performs this procedure. Although the defects can be detected prior to birth, the causes of the condition are widely unknown. Certain types of medication including isotretinoin and lithium, as well the obvious alcohol and drug abuse, can possibly increase the chances of a CHD. However, a woman diagnosed with a viral infection such as rubella also has an augmented risk for her unborn child. Scientists have isolated several gene mutations that may also be responsible for CHDs. There are over 35 kinds of CHD, most of which can now be treated or cured by surgery or medical devices such as pacemakers. The medical technology of the last 25 years has allowed a half a million children diagnosed with CHD in this country to live into their adult years. Lenore’s son Jeffrey is now a happy and healthy 9 year-old boy. The Camerons, after trying comfort care for 6 days, ultimately decided to get a second opinion. They were told that the three-stage heart surgery had a 75% chance of being successful. “He’s had all three surgeries.” Lenore stated. “In third grade, they start the one mile run and he actually looks forward to it. He did the one mile run in 4th grade and came in 36th out of 47 kids.” While her son may not be actively involved in sports, that’s okay with both Lenore and Jeffrey. “His brother does football, soccer, and every time he signs up, I ask Jeff if he wants to and he says no. But he eventually went and told me, ‘I don’t think I can.’ So that was a heartbreak. But it doesn’t bother him and he has other interests. Life isn’t about sports.” Although many CHD kids can still experience weakened stamina and may become winded more so than others without their condition, the future seems bright for kids born with these heart defects. Of course, there are still instances where the CHD cannot be treated. “It’s a heartbreak when we lose kids. There’s a little boy in that poster up there,” Lenore related, pointing at a poster on the wall of her new Cromwell office, “and it’s just like, how did that happen? Fortunately, it’s not common. They usually do well, if they went through all three surgeries. They usually do well for HLHS. Where we lose the kids is usually following the 1st surgery. But they’re getting better at what they do out there, that’s the thing. For example, the oldest [person] that has what Jeffrey has is only probably 22, so we don’t know what their adult life will be like. So it’s a wait and see. You just see how the others do. But we also don’t know what the future brings for our heart-healthy kids, so that’s the way I look at it. You have to otherwise you go crazy.” Donations to Little Hearts can be mailed to Little Hearts, Inc., P.O. Box 171, Cromwell, CT 06416 or made on their web site
http://www.littlehearts.org.
