Approximately 40,000 babies are born each year in the United States with a Congenital Heart Defect (CHD), that’s 1 in 100 children. CHD’s are the #1 leading cause of birth-defect related deaths. CHD’s have more occurrences than Spina Bifida, Down syndrome, and hearing loss. 1/3rd of children born with a CHD need lifesaving treatment before they are 1 year old. Most CHD’s have no known cause and many cases are unknown prior to birth, as was the case with Ella Grace.
After a normal and healthy pregnancy, Ella Grace was born on April 5, 2017 at 39 weeks and 2 days gestation. Emily’s labor was complication free and after routine hospital tests and observation (hearing, feeding, oxygen, etc.) Ella Grace and Emily were sent home two days later. April 14, Ella Grace began to forcefully vomit, was hard to wake and had little appetite. These were the first signs of her near-death experience. After a brief pediatric visit, a rush to the ER, a life flight to the medical center, Ella Grace was diagnosed with hypoplastic transverse arch, cortication and VSD. At 16 days old, Ella Grace had open heart surgery to repair her aortic arch and close her VSD.
The main purpose of this fund raiser, set up in honor of Ella Grace, is to significantly increase the awareness around Congenital Heart Defects and search out new or revised (hopefully non-evasive) in utero protocols as well as testing to identify CHD as early as possible.
We hope to raise awareness for all expectant parents and believe there are a few significant areas that should be evaluated for increasing the likelihood of catching a CHD early…hopefully in utero:
1. More sophisticated ultrasounds, where a large amount of attention is focused on the heart, including the valves and aortic arch.
2. A standard echocardiogram performed on every newborn within 24 hours of birth.
3. More sophisticated 4-point blood pressure analysis prior to the baby being released including tightening the spread between the upper and lower limb blood pressure readings.
4. Should any of these tests show evidence of a possible issue, begin administering small doses of PGE to allow time for further diagnosis and to keep the infant from getting into a survival type state after coming home which will require an order of magnitude more PGE to excite the PDA to keep it from closing as the body natural wants it to. This will lower the risk of the side effects associated with PGE.
While we are not experts in the area of CHD, we feel strongly that funds dedicated to CHD awareness will help increase the likelihood of identifying this deadly disease very early in pregnancy or life and in the long run save the lives of many babies.
With that said, in honor of Ella Grace Roberts, we ask that you please make a contribution to Texas Children’s Hospital. Your gift not only honors Ella Grace, but also helps Texas Children’s give every child the opportunity for a healthier future. Thank you for your love and support.