|
|
|
|
|
|
Remembering a CHD Warrior:
Steve Catoe
| |
It's My Heart wants to remember a true CHD warrior, Steve Catoe, this month. Steve lived his life in service to the CHD community as a friend, mentor, advocate, and voice and made an incredible difference in the lives of so many. He lost his battle with CHD this past week at his home in South Carolina. Steve was born with Tricuspid Atresia which is one of the rarer defects - in fact, only about 1 person in 10,000 has it. During his journey, he endured 3 heart surgeries and a pacemaker.
Steve authored the blog "The Adventures of a Funky Heart" where he shared latest research, stories, his advocacy, and his own story. His last entry of his blog chronicled the 66th anniversary of the first Blalock-Taussig shunt and issued a battle cry of sorts, asking the CHD community to band together and make it a goal to eradicate congenital heart disease. His last blog entries were inspiring as was his daily life.
He was a member and avid supporter of the Adult Congenital Heart Association. Steve was constantly in contact with parents and patients who were living with CHD. His vast research and experience gave his wisdom to impart with many who had a new diagnosis and needed hope or those who were weary from a long CHD journey.
Steve will be dearly missed. Our thoughts and prayers are with his family and friends as they mourn his loss. Thank you Steve for all you did and for your legacy in the CHD community.
|
|
|
It's My Heart Foundation Cruise FundraiserTake a cruise and raise money for It's My Heart too! Join us on a Royal Caribbean Cruise in 2011 or 2012 and raise $50 - $100 per ticket for the It's My Heart Foundation.For a list of the select cruises, itineraries, and registration forms CLICK HERE! Choices include: Alaskan, Eastern and Western Caribbean, and Bermuda cruises. 
|
|
 |
Follow Us on the Web
|
|
Support It's My Heart
| 
 |
|
|
| Heart Journey |
This is the heart journey of Sydney Monique VanShaar, as told by her mother Angela VanShaar
Our heart story is a little bit different then most, however, it begins in the usual way. Sydney was born April 15th, 1998 with Hypoplastic Left Heart Syndrome. Sydney had been diagnosed with HLHS at 18 weeks gestation. Three options were presented to her birth parents: palliative care, the 3 surgeries, or transplant. Because at that time our local hospital did not do neonate transplants it would mean either going to Denver or Southern California. The team here believed that palliative care would be the best option for Sydney and her birth mom, Teresa.
Teresa chose to look at Denver, UCLA and Loma Linda. Two years before Teresa had given birth to a baby girl that had died from diaphragmatic hernia shortly after birth - not giving Sydney a fighting chance was not an option for Teresa. Teresa reached out to all three hospitals and felt best about LLUMC Children's Hospital. A plan was made for Teresa to fly to Southern California when she was 32 weeks pregnant and wait for Sydney to be born. Sydney was born on her due date weighing 7 pounds even. After the usual battery of tests it was determined that Sydney was not a good candidate for the Norwood - Teresa's two options were either a heart transplant or palliative care.
Teresa chose transplant for Sydney and on her 7th day she was listed. Late in the evening of her 8th day of life her perfect heart was found. On the morning of April 26th, Sydney received her gift of life. Sydney was off the vent the next day, and discharged two short weeks later. Teresa and Sydney remained in Loma Linda until Sydney was six months post transplant before moving home to Utah. Once they returned to Utah, Teresa struggled to care for all of Sydney's medical needs. Despite Teresa's best efforts, Sydney was taken into custody by Family Services when she was almost 18 months old.
I'll never forget the day I met our girl. The state had called me three times asking for us to take Sydney. Twice I said no - I wasn't sure we could take care of a baby with a heart transplant. I agreed to take Sydney for the weekend, then through Thanksgiving and by Christmas we were hooked. Sydney had blonde fuzzy hair on her head, with the dark black cyclosporine eyebrows and hair on her arms and legs. Sydney was not walking yet - she only weighed 18 pounds. Sydney loved to be cuddled and loved on. The transplant team at Primary Childrens Medical Center loved Sydney - she had an appointment for a follow-up visit the day after she came to us. I brought her bucket of meds with me - the echo, labs, EKG and visit were new to me. I'll never forget Dr. Shaddy - he looked me straight in the eye and said "If you don't plan on keeping her forever, you need to find a family who will. This little girl cannot be moved over and over again."
We were lucky enough to become Sydney's forever family on September 12th, 2001. Sydney struggled with multiple hospital stays for upper respiratory infections her first two years with us. Later we learned that she was aspirating liquids and food, and also that she had reflux. Sydney received a G-tube and a Nissen when she was nearly three years old. Sydney also had her tonsils and adenoids out, several sinus surgeries and sets of PE tubes. Over this period of time we grew to love Sydney's birth parents and birth family. We have continued a relationship with them even today. We share holidays, dance and school programs, BBQ's on the lawn, and the ups and downs of life together.
When Sydney was nearly 6 she became ill quite often - low fevers, weight loss, body aches, but nothing that the doctors could really put together. After nearly two months and three cases of pneumonia, a CT scan was done of her lungs (the day after Christmas). In her lungs the doctors found three small masses. I thought I was going to faint. Sydney was admitted to PCMC in Salt Lake the next morning and would not leave for over six weeks. This was a trying time for us as her little friend Aspen from clinic had died two months earlier. The hospital was full and Sydney ended up spending part of her time in the last room that Aspen had been in on the floor. It was a very emotional time for all of us.
After about ten days Sydney was diagnosed with PTLD (Post transplant lymphoproliferative disorder). Because Sydney was nearly six years out from transplant this was a surprise for the team. Sydney was taken off of all of her anti rejection medications for 10 days and only restarted one of them at a much lower dose. Sydney had a PORT placed as her little veins could not support all of the pokes. Sydney had the good fortune of having Dr. Ampofo from Infectious Diseases help her to receive rituximab to fight the PTLD. They thought we would lose her at one point. Sydney is a fighter and surprised everyone. At last count Sydney has had close to 80 procedures/surgeries and more then that in hospital stays. Sydney thinks she should have her own same room on the 3rd floor at PCMC! Sydney is down to only four regular medications - with some of them twice a day. Sydney still receives extra calories at night via her G-tube, and is in a special education classroom at school to help her catch up. Sydney is still very small for her age - just under 60 pounds. She loves animals, dancing, riding her bike, TV and her sisters a bit more than her brothers.
We have people ask us "Why would you adopt a child like Sydney knowing she has all those medical problems?". Our answer is very simple - she's our child. For us it doesn't matter how she came to us, or that she started out with a broken heart, that she has out lived her life expectancy, or that she wondered how her baby brother would eat since he didn't have a G-tube. It comes down to the fact that our family wouldn't be complete without Sydney. We thank God daily for her donor and his parents for giving us the chance to be Sydney's family. For us each day is precious and a gift to be with Sydney.
|
Sharing our Journeys
|  Share your story with It's My Heart! We want to hear about your Heart Journey. Your story may be selected to be highlighted in our monthly national newsletter! Just send us your story written in a few paragraphs-be sure to include your (or your child's) diagnosis (how and when), your treatment plan, and an update on how you (or your child) is doing now. Please send a picture to go with your story and submit it at heartstories@itsmyheart.org |
CHD in the News
| New pump made for infant heart surgery
From UPI.com
WEST LAFAYETTE, Ind., Nov. 9 (UPI) -- U.S. researchers say they've developed a new heart pump that could help infants born with congenital heart defects survive necessary surgeries.
Scientists at Purdue University have created a "viscous impeller pump" for children born with univentricular circulation, a congenital heart disease that is the leading cause of death from birth defects in the first year of a child's life, a university release said Tuesday.
Continue reading the story here.
New device lets Utah woman go home a day after heart-valve implant
BY KIRSTEN STEWART
From The Salt Lake Tribune
Published Nov 16, 2010 10:04AM
When you've had three open-heart surgeries, you don't hesitate when your doctor says he can replace your failed valve without opening your chest - even if it means waiting more than a year to test the unproven procedure.
"I've got a 2-year-old son to keep up with," Charli Noyes said Monday during a news conference at Primary Children's Medical Center in Salt Lake City. "I can't afford to spend weeks in recovery."
The 20-year-old Sunset woman is the first in the Intermountain region to receive the Melody transcatheter pulmonary valve, the first artificial valve capable of being implanted via a catheter. Doctors at Primary Children's implanted the valve through a small incision in her leg at 8 a.m. Thursday. She walked out of the hospital just after noon the following day.
"I even went to the drugstore to get ice cream," she said.
Three other patients from Idaho, Montana and Arizona also successfully underwent the surgery last week - the culmination of a year of planning at the hospital and 15 years of design and testing by devicemaker Medtronic Inc., said Collin Cowley, director of Cardiac Catheterization at Primary Children's.
"It's really a substantial step forward in the evolution of providing care" for patients with congenital heart defects, Cowley said.
Continue reading the story here.
U.S. death rate from congenital heart defects continues to decline
From The American Heart Association online
DALLAS, Nov. 22, 2010
The U.S. death rate from congenital heart defects dropped 24 percent from 1999 to 2006 among children and adults, according to research reported in Circulation: Journal of the American Heart Association.
A congenital heart defect was the underlying cause of 27,960 deaths - an age-standardized rate of 1.2 deaths per 100,000 people - based on data from death certificates.
In a comparable study published in Circulation in 2001, deaths due to congenital heart defects dropped 39 percent from 1979 to 1997.
Keep reading here. |
| CHD in the Media | Marathon spotlight: Runners on why they're running
BY LAUREN JOHNSTON
NYDailyNews.com
NOVEMBER 6, 2010
I've been in contact with so many inspiring people who have been pushed to run the [New York City] marathon for beautiful, sometimes painful, but always moving reasons.
There are 45,000 stories coursing through the streets of New York City on marathon day. In this last week before the marathon, I'm highlighting a few of these stories from marathoners, as told in their own words. Meet Bob Alexander - or if you're a runner on Twitter you know him as @Heart_Inspired.
After people find out I am a Congenital Heart Defect Survivor who had open-heart surgery on Dec. 23, 2009, they ask me, why on earth would I run the New York City Marathon just 10 months after heart surgery. Well, that is a complex question, but I'll try to answer it. I run the 2010 NYC Marathon for two main reasons.
First, I'm running the 2010 New York City Marathon to raise awareness for genetic heart defects. Mine went undetected my entire life and was not detected until Oct. 22, 2009. Being an endurance athlete for 31 years, my cardiologist can't believe I survived. My wife pushed me relentlessly to get a physical, but being male, a marathon runner and Ironman triathlete. I resisted.
Finally I gave in and saw my personal physician, which is when he heard a heart murmur. A few days later, I had a stress Echo Cardiogram test and my heart went into V-Tach while I ran on the treadmill set at a 15% incline. My cardiologist saved my life that day. Two months and 1 day later I had open-heart surgery at the Cleveland Clinic and spent Christmas Eve in the Cardiac Intensive Care Unit (ICU).
My message, please see your physician and get an annual check up and I mean a full check up, because heart disease and heart defects do not run in my family, well until me. So listen to your body and see your physician at least once a year! By the way, the cardiologist tells me I saved my 23-year-old son's life. I had Tyler checked and he inherited my genetic heart defect. But because it was found early, he will be fine. Tyler runs his first marathon next spring and we plan to run it together.
Second, I run the NYC Marathon for children affected by heart defects, many still fighting for their lives. I want to send the message that I am a heart defect survivor, but it does not define my limitations. I want to give them and their entire families hope.
These are some of my True Heart Heroes; I will feel the wind for you!
Hudson, Bowen, Tiana, Abbie, Aidenne, Joshua, Peyton, Carlie, Ewan, Mason, Gabriella, Ethan, and Bailey.
http://www.nydailynews.com/blogs/running_dialogue/2010/11/marathon-spotlight-runners-on-8.html
|
Upcoming Events
| Northern New Jersey Chapter: Breakfast with Santa, Kids Tricky Tray, and 50/50
Sunday, December 5, 2010
The Brownstone, Paterson, NJ
For Info, click here.
Houston Chapter: It's My Heart Blood Drive
Thursday, December 9, 2010
1775 St. James Place, Suite 130
Houston, TX 77056
Info: To schedule an appointment, visit www.giveblood.org and login to Digital Donor. Enter sponsor code U925 or contact It's My Heart, Inc. at (713) 334-4244
Detroit Chapter: Raise a Glass to CHD Awareness
Wine Tasting and Silent Auction
Saturday, February 5, 2011
7:00pm - 10:00pm
Andiamo Novi
42705 Grand River Avenue
Novi, Michigan
Fresno Chapter: CHD Awareness Run/Walk
Saturday, February 12, 2011
Woodward Park, Fresno, CA
Register online here.
Houston Chapter: Keep the Beat It's My Heart Annual CHD Awareness Walk
Saturday, February 19, 2011
Sam Houston Park, Houston, Texas
Register online here.
|
|
CHD Birthdays | |
 
Will Gillette Harrison Root
December 1, 2005 December 2
 
Michael Palazzo Glada Luna McGettrick
December 2, 2009 December 6, 2005   Addison Crawford Cabell Stewart
December 14, 2009 December 25, 2008
Hailey Bates
December 28, 1998
We also want to recognize Trenton Kohl Woody (December 3, 2009- May 30, 2010) Photo not available.
Is your child born in January? Please send us your child's birthday and picture so we can all celebrate your child's birth with you! E-mail to
newsletter@itsmyheart.org.
We also want to celebrate all your angel's birthdays too! So, please send us their information so we can include them as well!
|
| Family Matching |
When you or a loved one is faced with the diagnosis of a CHD, it is important to know that you are not alone. Through our extensive Family Matching database you are able to connect with other families who have gone through or are going through similar situations. You will be matched based upon diagnosis and/or proximity. Sharing your experiences is an important way to connect and learn from others' experiences. If you would like to take part in this program please go online at www.itsmyheart.org and fill out our Family Matching form. |
Donations
|
One Time Donations from:
Encana Oil and Gas Annual Cook off Teams "Gater Bait" and "Hollow Logs" in honor of Miss Emma Lowther by her cousins Heather Winkler and Bridget Gauntt
Shirley Hoehl to support the cause
Brad Bourland in honor of Erica Bourland
Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way. All donations are tax deductible. Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc.
|
|
It's My Heart Chapters | |
The mission of It's My Heart provides strength and support for those affected by Heart Defects. It's My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It's My Heart creates alliances and networks among families, groups, hospitals, and the community.
The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.
If you are interested in organizing a chapter or walk in your area, please contact the It's My Heart National Office at (713) 334.4244 or (888) HEART.07 or e-mail chapters@itsmyheart.org.
Click here to find the IMH Chapter nearest you:
Fresno, CaliforniaSouth Florida Northern New Jersey
Cleveland, Ohio
Columbus, Ohio
Portland, Oregon
|
|
|
|
|
|
