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June / July 2014 Newsletter
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There is Hope!
The ONLY weekly internet talk radio show devoted
to the congenital heart defect (CHD) community

 

In this issue:

 
  • What's New on Heart to Heart with Anna

  • June & July Show List

  • Featured Article - Oral (Feeding) Issues

  • Book Review - My Brother Needs an Operation

  • Editorial - Sometimes Plans and Dreams Suddenly Change


What's New on Heart to Heart with Anna

 

 

Special Guests for Heart to Heart with Anna

By: Anna Jaworski
 

Dear Heart Friends:

It is with great joy that I am able to announce two very special Guests for the only talk radio show for the congenital heart defect (CHD) community available every week!

On Tuesday, June 10th our topic was: Failure to Thrive: Oral Aversions and Nutrition. Since so many of our children with CHDs suffer from the diagnosis of "Failure to Thrive" and often have oral aversions or food preferences that makes providing our CHD children with proper nutrition, this is a show you won't want to miss!

I'm pleased and excited to announce that one of our Guests for the show will be Kristi King! I read a terrific article on the Texas Children's Blog by Kristi. I loved how she talked about clean eating and healthy living. For our failure-to-thrive children, nutrition is even more complicated than trying to eat "clean." "Healthy living" for our families is not like it is for other families but I know that Kristi King is going to be able to share some insights with our CHD families about how to help our children to make the most out of their nutritional intake.

The other Guest I'm excited about is not currently scheduled for a particular day yet, but I hope to have him scheduled soon! This month, I went to a book signing at Books-a-Million for a brand new book called Special Heart by Bret Baier. Bret Baier, as many people know, is the Host of Special Report with Bret Baier on Fox News. Bret Baier is on a book tour for this book right now and I strongly encourage my heart friends to take the time to buy this book, read it, and if you're lucky enough to be in a town Bret Baier is visiting, to go to the book signing.


"Heart to Heart with Anna" is now on Tuesdays from 11:00 to noon Central Daylight Savings Time on BlogTalkRadio. You can learn more about the show by visiting the "Heart to Heart with Anna" website. If you are interested in being a Guest, please click on "Be On The Show" and fill out the form with your information.

 

June & July Show List

 

We would love to hear from you! To leave us feedback about our shows you can do so on the website, on our facebook page or contact Anna at Anna@HeartToHeartWithAnna.com

Important Note:  Our broadcast time has changed to 11 a.m. CDT. every Tuesday and will be available in the archives shortly after the broadcast is concluded. 
 

 

Tuesday, June 3rd, 11:00 a.m. CDT

Rainbow Babies

"Rainbow babies" are babies who are conceived after women have experienced a stillbirth or after a baby has died. We will discuss the process one woman has decided to go through in order to have her own rainbow baby, who is helping her and how others who have lost a baby to a congenital heart defect might find hope in giving birth to a healthy baby.  Listen Here

Tuesday, June 10th, 11:00 a.m. CDT

Failure to Thrive: Oral Aversions
and Nutrition for CHD Survivors

One of the problems many of our CHD children suffer from is "Failure to Thrive" and because the children with critical congenital heart defects usually have surgery within the first days or months of their lives, they may develop oral aversion (very probably because of being intubated for extended periods of time). This can make feeding our CHD children a great challenge. Listen to our show to hear of others who have dealt with these issues and find out how they have overcome problems.
 Listen Here

Tuesday, June 17th, 11:00 a.m. CDT

Dealing with a Long Hospital Stay

Children with critical congenital heart defects need surgery within the first days or weeks of life. It is not uncommon for these hospital stays to be filled with complications and situations where a long stay is inevitable. This show will deal with ways to help parents and children endure a long hospital stay. Our Guests will be a Heart Mom whose daughter was in the Cardiac Intensive Care Unit for the first ten months of her life and a Child Life Specialists. Together we'll discuss the issues that arise from an extended stay in the hospital so the transition from hospital to home is as seamless as possible.  
Listen Here

Tuesday, June 24th, 11:00 a.m. CDT

Sports and Boys with
Critical Congenital Heart Defects

Boys born with critical congenital heart defects are frequently not able to participate in sports like their heart-healthy peers. Because of the multiple surgeries needed, the frequent need for pacemakers or the concern about arrhythmias and the other complications that can accompany critical congenital heart defects, survivors of these defects frequently have to avoid contact sports or sports that are intensely aerobic in nature. This show will feature the father of a young son as well as a father/son pair who have experience with topic.  
Listen Here

Tuesday, July 1st, 11:00 a.m. CDT

How Military Families Deal with Having a Child with a Congenital Heart Defect

Military families lead a very different life than civilian families do. Military families come from all walks of life and, when their children are diagnosed with heart defects, the challenges can vary according to location, branch of service, and of course separations that come at the most unexpected times. Despite these challenges, military families try their best to find ways to balance all aspects of their lives with a positive attitude.
Listen Here

Tuesday, July 8th, 11:00 a.m. CDT

Gastrointestional Issues and Feeding Tubes in the CHD Community

This episode will investigate what kinds of equipment might be needed to help a baby with a congenital heart defect if that baby cannot nurse or feed normally. Listen as one mother shares her experience with her baby who needed a feeding tube. We'll also talk with a clinical psychologist who specializes in early infancy and childhood as well as eating disorders and tube feeding. Discover how one mother and a company over six thousand miles apart helped one little boy wean successfully from his feeding tube without ever leaving home!
Listen Here

Tuesday, July 15th, 11:00 a.m. CDT

Adult Congenital Heart Defect Survivors Finding Love

Two adult women born with complex congenital heart defects share stories about what it was like to grow up and find love in an uncertain world. As a bonus, the husbands will be on the show too! Many parents of children with congenital heart defects wonder if their children will survive infancy and can only hope and pray they will someday be adults. This show will address some of the fears and concerns adults with heart defects have, but above all, we'll talk about the joy of finding one's true love regardless of being born with a heart defect.
Listen Here

Tuesday, July 22nd, 11:00 a.m. CDT

Breastfeeding your CHD Baby

Breastfeeding a baby with a congenital heart defect has unique and special challenges. Many babies with critical congenital heart defects are taken away from the mother before having a chance to nurse at all. These babies also frequently have open-heart surgery within the first days or weeks of life and are often intubated and paralyzed which can interfere with the baby's natural sucking reflex. We'll discuss these topics and more with two heart moms who have breastfed their babies and a nurse who is a breastfeeding specialist.
Listen Here

Tuesday, July 29th, 11:00 a.m. CDT

Working Parents vs. Stay at Home Parents

When a family is told they have a baby with a life-threatening illness, does one of the parents have to stay home with the child? Why do some parents choose to become stay-at-home parents? Why do some parents decide to continue working. In this show we'll discuss the pros and cons of staying at home versus going back to work. Is the health of the child at risk? What about insurance? What about quality of life of the child? of the family? These are just a few of the issues we'll discuss in this show.
Listen Here

 
Keep listening in August for more great shows and exciting new topics!

--------------------------------------------------------------------------------------------
 

If you would like to be a guest on the show, or have a show idea,
please email Anna Jaworski: 
anna@hearttoheartwithanna.com


Visit www.HearttoHeartwithAnna.com for more info

 
Featured Article


Oral (Feeding) Aversions


Eileen C. Pearlman, M.A.,
Speech/Language Pathologist, CCC/IL-Lic
 

Definition
The definition of ‘oral aversion,’ according to MedicineNet.com, is “Reluctance, avoidance, or fear of eating, drinking, or accepting sensation in or around the mouth. A familiar example of oral aversion is a baby's refusal to breastfeed. Types of medical trauma such as prolonged intravenous or nasogastric feeding, gastrointestinal and respiratory disorders that may be associated with discomfort with eating may also contribute to the development of oral aversion.” Other causes of oral or feeding aversions are due to force-feeding, choking episodes, pain or discomfort when eating, or sensory processing disorders when eating.
 

The truth is “newborns are born to suck.” However, we know that this is not always possible, often due to medical conditions that require other forms of feeding. Sucking is important for strengthening the oral-facial muscles to prepare for eating and speaking. There are ways to improve/encourage the strengthening of oral-facial muscles. It is critical to seek the appropriate help for your child if they are experiencing oral/feeding aversions because aside from being used to obtain nutrition, adequate oral-motor function is the basis for eating and speaking.
 
Signs and Symptoms
  • Fussing or crying when food is presented
  • Gagging
  • Vomiting
  • Disinterest in food when food is presented
  • Skips feedings without distress
  • Appears hungry, but refuses to eat
  • Clamps mouth shut and turns head away from breast, bottle, or food
  • Consumes less milk or food than expected
  • Poor growth or “failure to thrive”
Clearly, these are just some of the signs/symptoms that may be present. If other behaviors are noted during feedings, it is important to let your physician and other team members treating your child, know what you are observing.

Prevention and Interventions
It is important to accurately diagnose and find the best course of treatment, once oral aversions are suspected or recognized. The earlier the intervention, the better, so that desired patterns can begin to replace those that are causing the problem(s). A speech/language pathologist (SLP) and/or occupational therapist (OT) that specialize in feeding, as well as a swallow study to rule out dysphagia (difficulty swallowing) and acid reflux are some of the first things that should be considered. Acid reflux can be diagnosed by a barium swallow study, in addition to a number of other ways.
 
As with any attempt to change behaviors, it is important that the interventions are consistent and presented in a positive manner (as with any speech/language therapy intervention). If your child is under the age of three-years-old (in many US states), they might qualify for Early Intervention and should be seen by an SLP and/or OT who specialize in feeding disorders.
 
There are a number of different treatments for oral aversions and each treatment depends on the cause of the aversion. For example a diagnosis of acid reflux, would probably have medication as the key component, while, sensory processing issues would call for a very structured desensitization program. For infants, toddlers, and children who are tube-fed, there are interventions that can be done with the assistance of an SLP and/or OT, who can help to encourage the strengthening of the oral-facial muscles, even while the children are being tube-fed. If this is not a recommendation made by your physician, ask for a feeding evaluation to be done by a speech/language pathologist and/or occupational therapist that specialize in feeding.
 
 
Resources
http://grey.colorado.edu/
http://www.pediatricfeedinginstitute.com/wp-content/uploads/2012/04/27-Severe-Oral-Aversion-OT-Advance-with-reference-2012.pdf
http://www.arktherapeutic.com/post/205


Sources
http://www.medterms.com/script/main/art.asp?articlekey=23918
http://www.babycareadvice.com/babycare/general_help/article.php?id=93
http://www.choa.org/child-health-glossary/f/fe/feeding-difficulties
http://www.realpediatrics.com/sleep.html
 
Featured Book

 

My Brother Needs an Operation


Written by: Anna Marie Jaworski
Illustrated by: Linda Ball

Baby Hearts Press, 1999
ISBN: 0-9652508-2-2

For complete book description, sneak peek into selected chapters, book trailer and purchase information, please visit: www.babyheartspress.com




By Shirley Priscilla Johnson 
 
I want to exalt Anna Jaworski for writing one of the most thoughtful books that I have read in a very long time. Inspired when her son Alex had to be hospitalized for open-heart surgery, the author saw the trauma on her other son, Joey, and realized there was a need not being addressed in this area. Her work has met this need with flying colors.
 
Of course when a child must undergo an operation, we all zero in our attention and affection on them, and we should. However, without meaning to, we often forget the other children in the family and do not realize the emotional conflicts that they are encountering. This book will open your eyes to their feelings.
 
Ms. Jaworski does a wonderful job in "My Brother Needs An Operation" in showing, with honest words and colorful illustrations, what will happen during this time.
 
She establishes the family relationship, the different activities they share and the bonding between siblings.She speaks of the fear that the sibling feels when he hears his brother will be in the hospital and she begins to deal with that fear in many constructive ways. She takes you into the mind of the child, what he is thinking and feeling. Excellent!

Ms. Jaworski includes in the back of the book a Hospital Diary and Activity Pages. This is great. She has pages for the child to fill in his name, feelings, draw pictures and play games.

I can not even imagine the heartache a parent feels when their child must undergo an operation, but I will tell you this. If you are experiencing this trauma, and you have other children in your home, this book is a must for you. It is one of the most outstanding books, touching the emotions of a hurting child, that I have read in a very long time. If I could stand and applaud this author, I would. But all I can do is write a review that I hope will touch you enough to make you seek out this book, if you have this need or know someone who does, it is a must read.
 
My Brother Needs An Operation, words from the heart of one who knows.

Highly Recommended!
 


Sometimes Plans and Dreams Suddenly Change
 

By Callie Rickard
Editor and Graphic Designer

 
The love of a family is life's greatest blessing” 
  - Unknown

 
Family planning is a huge decision for any couple. There are dreams discussed and it is an exciting and sometimes difficult time as the couple marches forward into parenthood. When parents are presented with the discovery that their new baby has a congenital heart defect, whether still in the womb or shortly after birth, all those plans and dreams can suddenly change.

My husband and I didn't rush into marriage, we dated for 8 years before finally getting married in the summer of 2002. We were excited and hopeful to begin our family and we quickly learned that we were expecting our first baby a few months later.

DJ was born the following summer, and with great joy and elation we welcomed our baby boy into the world. We would soon find out just 2 days later into our happy bliss, that DJ was born with a critical congenital heart defect that required immediate intervention or he wouldn't survive. He would end up being our best miracle gift ever as we brought him home on our first wedding anniversary, 12 years ago.

Having a child born with a congenital heart defect can change a couple's family plan completely. Our dreams have suddenly changed from what we once had hoped them to be. In mine and my husband's case, it sped them up. And we decided that for us and for DJ we wanted him to be a part of a big close family. By DJ's 2nd birthday, we had added a brother Alex, and a sister Diana. And what a blessing it has been to watch them grow up together so close in age and develop a close bond and friendship.

Just because our plans change, and our dreams take another course, doesn't mean that our family is less blessed, maybe we are even more so.

 
 


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