TCHIN was the first organization that I was introduced to after giving birth to my first son who had a complex congenital heart defect called Hypo-Plastic Left HEart Sysndrome. TCHIN's website had all the information that I needed to help me through my journey and to connect with others in the same position as we were. I don't know what I would have done without TCHIN back then!
My daughter was born 17 years ago with Hypoplastic left heart syndrome, and there was very little information available. I clung to a copy of an article about a little boy who had the same thing because it made me feel we were not alone. I became involved with the Congenital Heart Information Network at the beginning, and how watched it evolve. This group has been a wonderful resource for me. It has educated me on procedures that my daughter has had - I have no medical background, and her issues have been complex. I have met families who are going through the same thing, so I don't feel alone and isolated. In turn, I hope I have been able to provide hope and information to people just starting down this path. I'm giving back, and that helps me, too. I would really feel lost if this group did not exist!!
My son was diagnosed with a heart defect, couple days after being born and a few hours before we left the hospital. I was told he'd need open heart surgery sometime in the first two years of life, or he wouldn't survive. I was told to see the cardiologist in his office in a week, that we'd be monitoring my son's progress to allow him to grow as much as safely possible before the surgery. And then I was told to take him home and enjoy him. Of course, I was terrified. C.H.I.N. provided me access to many families who had faced the same kind of situation and were there to provide support. Most importantly, in addition to knowing there were people going through the same fears and challenges as I, they also provided me with vast amounts of information. We actively evaluated options for surgical centers and surgeons, in part from feedback from community members. My son had a successful repair to his heart. And over the years, as he has also faced developmental challenges that are more prevalent among kids with CHDs, Ive returned to the site many times to see if others were confronting similar challenges and what they've done about them. This site and its community are incredibly valuable to the many families supporting children with CHDs. I can't recommend C.H.I.N. highly enough.
CHIN has been serving the community impeccably for about 15 years and has always been there for me when I needed information based on adult cardiology. I admire their groundbreaking use of patient-professional relationships which has helped many others besides myself !!
C.H.I.N. has been extremely valuable to me and my family as we navigate the long and winding road through life with a child who has Congenital Heart Defects. The links to information on their site, stories about children and adults with CHD, and wonderful relationships I have made with other families through their online support groups has helped me more than I can even say.
My family has been involved with CHIN for 11 years in the capacity of donor, volunteer and client. Our youngest child was diagnosed with Hypoplastic Left Heart Syndrome and has required multiple open heart surgeries, heart catheterizations and other medical interventions since birth. Early on especially, I could not leave home much due to her medical fragility. We did not know anyone else locally who had gone through anything similar. It was a very scary and lonely time, even with support of family and friends. Through CHIN, I came to meet other families going through the same things. If I had questions, fears, joys, I knew I could turn to my CHIN family for answers and support. Truly, I do not think I would have gotten through the early years with my daughter without needing counseling if it hadn't been for CHIN. Today, we have gone several years without more than annual visits. But I still rely on CHIN for information about the latest research and treatments. CHIN members are very well educated about Congenital Heart Disease treatments, as well as school-related issues. Even though my daughter is thriving today, I still rely on CHIN for information and support. Without it, I would be at a loss for information, even though I read many studies. Studies just aren't the same as hearing first-hand accounts of the latest treatments and problems for those with HLHS. CHIN fills that void.
Our daughter was diagnosed with Hypoplastic Left Heart Syndrome in utero. When hospital staff prepared us for her delivery, The Congenital Heart Information Network was recommended as a site to visit for support and accurate information, both of which have been invaluable resources as we've navigated her medical needs for the past seven years. We also appreciate the advocacy and awareness components which we know will extend and improve our daughter's quality of life. We are continually grateful for the support and advice we receive on the parent email board; we learn information that we never thought to consider and are empowered in our ability to care for our daughter.
I came across The Congenital Heart Information Network years ago after my child was diagnosed with a defect and an experimental procedure was recommended. The local cardiologist had no resources to give me to find out all that I could. Scouring the internet uncovered C.H.I.N., the knowledgeable members there, information, resources, contacts, and most importantly, support for a fellow parent struggling through the shock of my toddler's diagnosis, treatments, and open-heart surgery. Years later I again turned to C.H.I.N. for a different child: my newly diagnosed teenager. The support was there from teenagers with defects and parents of those teens. I learned about the special concerns older children have when undergoing surgery (social, academic), what assistance to ask of teachers, and how to be better prepared to help my child mentally and physically. I'm forever thankful. Without a doubt C.H.I.N. is the single most important place/resource that "carried" me through these experiences.
My son was born 15 years ago with hypoplastic left heart syndrome and I went searching for help and found the Congential Heart Information Network. I have gotten both practical and emotional support and been able to connect with others with similar situations. This group of parents facilitated by tchin have truly become my friends who understand. They have seen our family thru 3 open heart surgeries and a difficult heart transplant just last year. It made a huge difference to our family to know there were others around the country and the world providing thoughts and prayers for my son as well as "been there, done that" support. Things would have been far tougher without tchin. I recommend them often to other parents in similar situation. As a matter of fact, I did so again today.
I have been involved with this organization since its inception. When my daughter was about 11 years old - in 1994 - I got my first computer. I looked and looked for information on her heart defect and began correponding with other parents of heart kids. C.H.I.N. has evolved through time into a great place for information and support. I have made many "heart" friends via this forum. I had finally found a place where I could talk to people who were having the same experiences as my family was faced with. I cannot say enough wonderful words about C.H.I.N. and its founder, Mona Barmash.
When my son was diagnosed with a severe heart defect, we were devastated. It was not until I found this site which offered support, information, and so much more, that I did not feel alone. As the years went on, my son developed another rare condition because of his Fontan heart surgery called PLE, and when i notified tchin.org that families dealing w/ PLE were dealing w/ unique situations and there really was no support groups, they added a separate PLE support group- When a loved one-especially a child- has a rare medical condition, it is devastating-knowing others are there 24/7 for information, shared experiences, and support helps in ways words cannot even begin to express. This site is a blessing.