For Parents By Parents
I deeply believe, and have seen through experience, that moving these learning networks forward, as the norm not the exception, is paramount for improving short and long-term outcomes for chronically ill children”.
–Stacey Lihn, Sisters by Heart and NPCQIC
New care transitions video (by parents for parents) from
NPCQIC and Sisters by Heart
YOU ARE NOT ALONE
Hello Parents, Grandparents, Relatives, Friends and Caregivers,
You have probably arrived here because a child that you care about has been affected by HLHS. We are here to let you know that you are not alone and to offer some support. We are parents of children with HLHS. We have traveled the early road and continue on the journey with our children and families. Our goal is to wade through the vast amount of information, which can be confusing at best, and provide some practical help in simple terms to both clinical providers and each other.
In 2012 we launched our Facebook Group, to help organize our experiences/input in a constructive way which will help all of our clinical teams, including doctors, nurses, nutritionists, and others. Members of our care teams will post questions on a regular basis – questions that only you can answer! Questions about your experiences, what you liked, what you did not like, what made sense, what was confusing etc. This is a place where we want to hear your constructive comments – suggestions that would have made things better. Please make every effort to focus your responses to the questions that are posed. NO PERSONAL COMMENTS, INCLUDING NAMES OF PATIENTS, PROVIDERS OR CAREGIVERS YOU MAY HAVE SEEN IN THE CONTEXT OF CLINICAL CARE, ARE TO BE USED.
Please log onto Facebook, then click here to join the group.
As parents, we have been given space on this website to create a link which will provide real life working tools for all of you. Check out the links for various resources that might be helpful to you and your care team.
The NPC-QIC, a JCCHD initiative, (“the Collaborative”) is a mouthful. As complicated as the name sounds, it is funny that its purpose is so simple—to improve the health of children born with congenital heart defects. The Collaborative currently has participants representing over 40 different hospitals from around the country. The list includes (but is not limited to) doctors, nurses, dieticians, social workers, and proudly, parents, coming together to share information and experiences to improve the way forward for our children. We want you to know that our voices as parents have power and we are heard and valued.
As always, we encourage you to participate and advocate for your child’s care - in the hospital, at the doctor’s office, and at home. If you are interested in getting involved with this group of parents, please contact Kay Fricke at Kay.Fricke@cchmc.org and she will assist you.
The Parents of The Collaborative