Only one percent of all funding from the National Institute of Health is distributed toward pediatric research, which means that less than one cent per dollar is able to be donated to this specific cause. Independent donations and fundraisers are fundamental in impacting the future of congenital heart defects.
Not only is funding important, but awareness can help encourage people to become an organ donor, or to make blood donations whenever possible. Every three seconds in the United States, someone requires donated blood. Often these are patients undergoing heart surgeries, including children born with congenital heart defects.
It is also important for the families of a child suffering with a congenital heart defect to know that they have support. Whether the outcome is blessedly resolved easily, or sorrowful, each family has a unique but common struggle.
It has been especially important for us here at Cathy's Creations to encourage parents to feel loved and supported through their difficulties because we are aware of, and friends with, so many people whose children are struggling or have lost a difficult battle with congenital heart defects.
Among them is an infant named Emily, who lost her battle at the painfully short age of only ten days old. Born in May 2010, Emily was diagnosed with a heart murmur. At two days old, during a routine exam on the murmur, it was discovered that Emily suffered from HLHS, or Hypoplastic Left Heart Syndrome, a condition in which the left side of the heart stops developing early in the pregnancy, sometime between seven and twelve weeks gestation. Desperate measures were taken to save her life, but her heart could not handle the stress. At just over a week old, Emily passed away. Emily's Heart Bracelet, and more details of her amazing story, are available on our website.Chloe, born in 2004, shares a similar and heartbreaking story. Born with the same devastating condition, Chloe also lost her life despite a team of doctors prepared to assist in any way possible. Her parents have since created the Chloe Duyck Memorial Fund, which promotes awareness for CHD and also helps to raise money in order to provide funding for research in pediatric congenital heart defects.
In order to promote awareness of CHD, and to help this extremely under-funded cause, we would like to ask you to participate in a donation-based random drawing for our CHD Awareness Bracelet:
(This bracelet is available for purchase with proceeds to be donated to the same cause that will be supported by this contest.)
In order to enter to win, we ask that you make a donation in any amount you are comfortable with, whether it be a dollar or significantly more, to this Paypal address: cathy@cathyscreationsjewelry.com. In order to achieve as large of an impact as possible, and to give everyone a chance to contribute to this worthwhile cause, we are running this contest for the month of February and will draw a winner on March 1, 2012.
Donations that exceed $50 will receive two entries into the contest.
All of the money raised will support Hope 4 Tiny Hearts, the Chloe Duyck Memorial Fund. This is our second year participating in a fund raising activity for this cause, and last year we raised $2500.00! This amount was donated in full to the Cardiopulmonary Research Science and Technology Institute.
Our goal this year is to meet or exceed this amount.
Please consider a charitable donation for this worthy cause. While we are drawing a bracelet winner on March 1st, we are aware that anyone and everyone who can spread the word, share this blog, and donate anything from a moment of their time, to dollar from their pocket, are the true winners. We appreciate the love, generosity, and unconditional support from everyone willing to participate.
In the comments section, we invite you to share a story or name of someone you know who is affected by a congenital heart disease. Please also feel free to share if you have donated your money with this person in mind.
Thank you!
My daughter, Molly was born on May 4, 2010 with a very complex heart as well as Heterotaxy Syndrome. She was born with an ASD, VSD, common AV canal, interrupted IVC, PVS and Dextrocardia. She was transferred to Children's Hospital Boston where she spent the next 8 months of her life in the CICU. She had her first heart surgery for PA banding at 8 days old, her first open heart surgery for a biventricular repair at 6 weeks old and her second open heart surgery at 8 weeks old to repair her mitral valve and have a pacemaker placed. She had a very difficult time coming off of the ventilator and ended up with a tracheostomy as well as a gtube. She also battled a very serious blood infection as well as chylous effusions for 6 weeks. She was finally discharged on January 4, 2011. In March of 2011 she came off of the ventilator and oxygen. In August of 2011 her trach was removed. She is now almost 21 months old and while her heart is still healing she is doing amazing. Her latest echo shows normal heart function, normal pressures and mild regurgitation on her mital valve. She was very very sick and to look at her today you would never know that there was a thing wrong with her unless you saw what was under her shirt. She is a true miracle and proof that modern medicine as well as living 40 minutes from the #1 cardiac hospital in the country does work!
ReplyDeleteMy daughter, Adalynn, was diagnosed with a VSD during my pregnancy. With this diagnosis, there were other concerns, which we learned later is given the name Rhizomelic Chondrodysplasia Punctata (RCDP). This is a rare genetic disorder that is terminal. When Adalynn was born, it was also discovered that she had a heart defect other than the VSD. She had stenosis of the aortic arch and needed complete reconstruction. She was life flighted to another hospital, kept on medicine to keep her arch open, and at two months of age underwent surgery for both repairs. The surgery was successful for the repair, but not successful in the amount of time she had to be placed on bypass for the surgery due to extensive bleeding. She was placed on ECMO life support for 17 days, which is just another bypass machine. November 30, 2011, Adalynn passed away as a result of the difficult heart surgery she underwent. I never knew the amount of children affected by CHD, now I do. I want to bring awareness and research to help detect heart defects. Living away from home for almost 4 months, I met many children with a heart defect. Many children will go on to live normal healthy lives, but others will continue to need more surgeries. I will do what I can do to support this awareness!
ReplyDeleteMy Andrew was born April 6, 2005-one of the most amazing mornings of my life. We spent a few extra days in the hospital due to my being Group B Strep+, and at 3am the morning of our release I woke up and decided to check on him in the bassinette next to me. I noticed a froth at his tiny little mouth, so I took the bulb aspirator to his mouth to get out what I thought was probably a little drool. In the mere seconds it took me to pick up my sleeping newborn he went from a healthy pink to the scariest blue. I simply remember somehow getting to the other side of my bed to hit the call button and screaming. In a flash a nurse was in and out, my hands now empty-my own heart dropped to the floor. Every ounce of life in me drained as thoughts swirled through my head. The only thing to focus on was the funeral of Pope John Paul II, so I intently prayed. An amazing nurse came in with a possible update, but mostly to check on me and just hug me as I was all alone for that forever (in real time, actually 3 hours) until the NICU doc came in to let me know that he had coded and CPR performed. He was still with us, but would be spending some time in NICU. I was finally able to see my little one, touch him, know that he was ok albeit attached to more wires than i could imagine. After numerous tests, it was found that Andrew had Patent Ductus Arteriosis (PDA) and that many children simply "grow out of it." We trusted in the pediatric cardiologists as they were "the experts". The experts had us wait 6 months for Andrew's heart catheterization-which took place October 17, 2005 at Joe DiMaggio Children's in Hollywood, FL. The head of Pediatric Cardiology was his surgeon and his local anesthetic procedure should only take an hour. 4 hours later, we receive word that Andrew was in recovery and was being taken up to his PICU floor. Unfortunately the Ped. Card.s in Palm Beach County misdiagnosed his PDA and what was supposed to be a simple closure resulted in Andrew having an adult heart septal occluder being implanted in his heart for the closure and because local anesthetic didn't work on him, he needed general...the childs dose didn't knock him out, but finally an adults dose did! The months lost waiting resulted in Andrew having numerous developmental delays and brought to light a few other medical issues he would have to continue to deal with such as a submucous cleft palate, torticollis, underdeveloped palm muscle. Andrew had 80% closure when the implant was locked into place. 100% within a month of the procedure. He went from a baby who gained less than a pound in 6 mos. to a baby who gained 10lbs in a month. As of 2011, Andrew no longer has to see a cardiologist regularly, only IF he has any issues. We still monitor his submucous cleft palate annually with his plastic surgeon, and his torticollis was reversed with physical therapy. He continues with OT and ST in school, and we are on the cusp of having him tested for possibly high functioning autism/aspbergers.
ReplyDelete