Tuesday, June 28, 2011

Current Research Studies of the Top Ten Best Children’s Heart Hospitals


As a parent of a child with HLHS, I often think about what concerns other heart parents have about their children. Although our children have a common diagnosis, they are very different developmentally, physically, socially, and emotionally. A general internet search of Hypoplastic Left Heart Syndrome leads us to basic information on the diagnosis, heart anatomy, surgeries and transplant and very little else, but leaves us with many questions. How does a child develop HLHS? Can HLHS be prevented? What does this mean to a child with HLHS? What does this mean to a family of HLHS?  How best to share our information with one another? How can we help the doctors put the pieces together of this puzzling heart defect? One goal of mine is to find ways to expand on the current published knowledge parents can access regarding HLHS. I also strongly encourage parents to participate in research studies involving our special kids. This is the key to answering the many questions we have about HLHS.  In the meanwhile, I would like to share with you some of the current research studies the Top Ten Children’s Heart Hospitals are currently working on to better care for our children.

Children’s Hospital Boston

Principal Investigator: Jane Newburger, MD
Protocol Title: Brain Structure and Function in Adolescents after the Fontan Operation
http://www.childrenshospital.org/research/clinical/TrialDescr.cfm?id=236

Principal Investigator: Pediatric Heart Network Multi-Center Study
Protocol Title: Single Ventricle Reconstruction Study Extension

Principal Investigator: Pediatric Heart Network Multi-Center Study   
Protocol Title:  Fontan Follow-Up Study Basics
Principal Investigator:  Mark C Wesley, MD   
Protocol Title:  Pharmacokinetics of Tranexamic Acid (TXA) in Children Undergoing Repair of Congenital Heart Defects Utilizing Cardiopulmonary Bypass
Principal Investigator: Michael Agus, MD  
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery 
Principal Investigator: John M Costello, MD MPH
Protocol Title: Effects of Perioperative Nesiritide or Milrinone Infusion on Recovery From Fontan Surgery 

The Children’s Hospital of Philadelphia

Principal Investigator: Jack Rychik, MD
Protocol Title: Sildenafil After the Fontan Operation (SAFO) 

Principal Investigator: Robert E Shaddy, MD   
Protocol Title: Evaluation of Panel Reactive Antibody in Children Following Stage I Palliation for Hypoplastic Left Heart Syndrome

Principal Investigator: Felice Su, MD
Protocol Title:  Understanding Dexmedetomidine in Neonates After Open Heart Surgery


U-M C.S. Mott Children’s Hospital

Principal Investigator: John Charpie, MD, PhD    
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery


Texas Children’s Hospital

Principal Investigator: Tia Tortoriello Raymond, M.D.   
Protocol Title: Trial of Vasopressin and Epinephrine to Epinephrine Only for In-Hospital Pediatric Cardiopulmonary Resuscitation


Lucile Packard Children’s Hospital

Principal Investigator: Stephen J Roth, MD, MPH  
Protocol Title: Aminophylline to Prevent Acute Kidney Injury in Children After Cardiac Surgery (KID PRO AM).


Children’s Healthcare of Atlanta Pediatric Hospital

Principal Investigator:  Brian Kogon, MD
Protocol Title: SPY Imaging System: It’s Role in Pediatric Cardiac Surgery 

Principal Investigator: Shannon E Hamrick, MD      
Protocol Title: Magnetic Resonance Imaging (MRI) to Evaluate Brain Injury in Congenital Heart Disease (CHD Brain) 

Principal Investigator: Denver Sallee, MD  
Protocol Title: Abnormal 3-D MRI Flow Patterns in Adolescents Patients with Bicuspid Aortic Valve


Children’s Hospital of Wisconsin

Principal Investigator: Steve Zangwill, MD      
Protocol Title: Erythropoietin and Pediatric Cardiac Surgery (EPO) 

Principal Investigator:  Rohit Rao, MD  
Protocol Title: Multi-Site Near Infrared Spectroscopy (NIRS) Monitoring of Children During Exercise 

Principal Investigator: Nancy Ghanayem, MD  
Protocol Title:  Near-Infrared Spectroscopy (NIRS) Neurodevelopmental Outcomes (NIRS ND)


Cincinnati Children’s Hospital Medical Center

Principal Investigator: Katherine Krawczeski, MD     
Protocol Title: Intravenous L-Citrulline to Treat Children Undergoing Heart Bypass Surgery 


Nationwide Children’s Hospital

Principal Investigator: Vidu Garg, MD
Protocol Title:  Genetics of Congenital Heart Disease

Principal Investigator: Aymen N Naguib, MD           
Protocol Title:  Measures to Lower the Stress Response in Pediatric Cardiac Surgery

Monday, June 13, 2011

Back to the Basics

Every spring, I perform the customary ritual. Spring cleaning. I clean all of the windows, dust the winter’s cobwebs away and scrub my house from top to bottom.  And most definitely, I clean out the closets.  Why is that every year I have to do this? Well, winter is a long season and this is how I welcome in the clean fresh spring air. And as far as the closets, well, quite simply, kids grow and so out go the pants and sweaters from fall.  Of course it doesn’t stop there.  The kids have grown since last summer so the summer clothes have to be sorted too!  Now in our house, only Carter as the youngest can get hand-me-downs from Augie – and it stops there because Augie’s next older sibling is a girl, and the next oldest is a boy, and the very oldest is a girl, so they all have to get new clothes, which means I have a lot of sorting and boxing to do and then a trip to the donation center. 

Which brings me back to the basics.  Spring cleaning is a ritual we perform every year in our homes. So this year, I’ve decided to do this not only to our home but to our mind and bodies as well. I feel this is very important for a heart family.  This venture of mine stems from two campaigns; first, the We Can! Program sponsored by the National Heart Lung and Blood Institute, National Institutes of Health to enhance children’s activity and nutrition, and second, the book I have been reading titled, “Simplicity Parenting,” by Kim John Payne, which offers simple strategies to simplify your home to reduce stress and over stimulation.  

How does all of this relate to a child with a congenital heart defect?  Physical fitness, good nutrition, fun with the family, and a safe and clean home, are basics. In my home, and in my readings, I have found that learning to live with a chronic condition is not only challenging for the child who is affected, but for his/her family and friends as well. Our school-aged heart kids may be fearful, feel they are different, and may struggle emotionally and socially. My theory is that happy and relaxed, healthy parents will raise calmer, well-adjusted, healthier children. 

Spring cleaning to me – it’s a holistic approach to life.  Consider spring cleaning your family!

http://www.med.umich.edu/yourchild/topics/chronic.htm

Thursday, June 2, 2011

Can We Talk?


In the roller-coaster life of a child with a heart defect, sometimes parents need someone to turn to when they want to have a conversation with somebody else who understands what their daily life is like.  We’ve all been there – the sympathetic nodding of the head, the jumbled response, the pause in conversation – When all a parent wants to say is I’m frustrated because my child …… and I don’t know what this means.  It’s the unknown, the unpredictability, and the everyday challenge of living a normal life.   I’ve spent some time researching support groups and I’ve listed the ones I think have something to offer to everyone.  

Mended Little Hearts
Mended Little Hearts partners with hospitals to offer resources to families diagnosed with a congenital heart defect and provides support to families by trained volunteers through Hospital Visiting, Internet and Telephone Visiting, Group Meetings and Social Events.
http://www.mendedlittlehearts.org/

The Congenital Heart Information Network
CHIN has a very nice Community section where you can communicate with others in the Chat Room during regularly scheduled discussions, join an Online Support group, visit the Family Room to read other families’ stories and share yours, see the Portrait Gallery with photos and stories of members, and visit the Memorial Garden which was created to honor the "brave warriors" who are no longer with us.  Visit their Resources page for a list of Book Reviews and links to local, regional and national support groups.

Saving Little Hearts
Saving Little Hearts is an organization that is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Care Packages to children undergoing heart surgery.

Little Hearts, the Children’s Heart Society, and Heart Defects Families Association
These non-profit, volunteer based organizations provide support groups to parents and parent-matching programs.


Whether you decide to join a group and become an active member or just drop in from time to time to visit the resource pages, I hope you find comfort in the knowledge that you are not alone in your struggle.  There is a community of families, volunteers, and dedicated medical professionals who are there to support, educate, inform, and connect with you in a very positive way.