–by Mary Helen Darah
Tanya Laney, the mother of twelve-year-old Caden, is on a mission to educate and raise awareness for congenital heart disease (CHD). Her son is a “heart warrior” who has benefitted from being part of Conquering CHD, Northwest Ohio Chapter. She and co-leader, Amanda Hoover, utilize the local chapter to provide knowledge, hope and lifelong support to those living with congenital heart disease. “The organization brings together individuals who are battling CHD,” stated Laney. “It is so important for kids like my son to be around others dealing with similar issues. When Caden was first born, Conquering CHD was not in northwest Ohio. I asked his physicians and anyone I could think of if there was a support group because frankly, it is a lot to deal with. I am so happy we now have a local chapter.”
Laney is hoping her involvement with the organization will bring awareness to the condition. “CHD is the number one birth defect in the USA,” she stated. “I was not personally aware of CHD until my son was diagnosed at birth. Often children are diagnosed in utero. Conquering CHD NWO has been so helpful to us and I am honored to be part of the organization. In addition to being an informational resource, Conquering CHD sends cookies to local hospitals and kits to parents that are full of information,” she said. “One of my favorite things in the kit is a list of questions to ask health professionals. It was so helpful for us because things get overwhelming and you don’t think of the simplest things to ask. For example, my son cannot ride roller coasters. Who knew? The list gives you questions to ask your doctor that you may not think of off the top of your head.”
February is Heart Month and Feb. 7-12 is Congenital Heart Disease Awareness Week. “During this week, Card My Yard is having a sign at Levis Commons,” stated Laney. “We encourage families to come and take photos by the sign then post them on social media. Social media has been one of our biggest allies and sources of spreading awareness.”
Annually the group hosts a 5k in September. “We are hoping to host it at the Toledo Zoo this year and incorporate all age groups,” said Laney. “Also, my son had a toy drive for tiny heroes. Caden started the drive and now we are collaborating with Conquering CHD. We received 6,000 toys in three months. We dropped them off to Mercy Children’s Hospital, ProMedica Russell J. Ebeid Children’s Hospital and to C.S. Mott Children’s Hospital in Ann Arbor. It was so helpful for parents. When you are a parent of a child with a heart condition, you do not want to be out and about shopping, especially during a pandemic.”
The local chapter is continually expanding its reach. “We are really growing,” said Laney. “Amanda Hoover is the lead of the adult CHD support. People don’t realize that many patients cannot go to a regular cardiologist. Even if you are 30 years old, many patients go to pediatric providers because they have more experience with the disease. Thankfully, survivors are living longer, healthier lives and the adult support pieces have been very beneficial.”
In addition to being part of Conquering CHD, Laney encourages those with the disease to be their own advocates. “I am constantly encouraging my son to be his own champion. Kids are at an awkward age and it’s tough to deal with the disease in addition to the normal growing pains they experience. They want to speak up for themselves but are insecure. We strive to give kids a voice. Many of these kids face multiple open-heart surgeries. My son has had four heart surgeries and is teetering on having another surgery. We battle the mental health piece as much as the physical aspects that come with the disease. We let kids know that it’s ok to be scared and that it’s ok if you look at life a little differently than your peers.”
Laney hopes the community supports the Conquering CHD events and becomes more aware of CHD. “People can help by joining the 5K but even more importantly, learn how to use an AED (automated external defibrillator),” she said. “Get your children involved. My son has a friend who has severe medical issues as well. If it were up to his other friends, they would not know what to do in case of an emergency. Also, consider hosting a CPR class or check out one of our monthly webinars. My hope is that everyone can have a heart and help out our heart warriors. You may not see their scars but they fight battles every day.”
Visit Conqueringchd.org for more information. The Conquering CHD sign for photo taking will be in place until Feb. 14 at Levis Commons in Perrysburg.