In our efforts to save our little girl and make sure she has plenty of medical coverage and aid we've started the "SAVE SCARLET HLHS Awareness" Organization. Starting with Bracelets at $5.00 each we are realizing just how many people are really here for us. I have had nearly 100 people tell me they want orders of bracelets or enough to sell themselves and its truly remarkable the love and compassion we feel. We have also had people be more than willing to help us design shirts, as well as websites to help promote HLHS Awareness and Saving Scarlet. Shirts are in the brainstorming stage of the artist and he is willing to start them whenever one is agreed upon. We have not yet determined the prices of the shirts. Well be spreading awareness at the EXTREME THING this year at a booth with our T-Shirt supplier company ALTR (A life to Remember), we are honored they would be so willing to have us share it with them to help our daughter. Scarlets life is definitely one to remember :)
Support is another thing we are feeling an abundance of, whether its from prayers, donations, or talents being offered to help raise money, all of these things and much more just give us more joy than could ever be expected during a time like this. Blessings are coming, with the start of my new job, cake orders, and babysitting, were making enough money to get some of her necessities, as well as creating more room for her. Now were just waiting for Vince to get a job so Papa Monkey can do work too :) Hes very supportive and has expressed through tears how incredibly grateful he is for his family and friends that are helping us through this time.
Tomorrow is a big day! Another ultrasound and meeting with both doctors (Gorski-Ultrasound and Rollins-Pediactric Cardiologist) Hoping for more good news, the amnio indeed came back positive in every way, our little girl is healthy aside from her congenital heart defect as far as they can see through the chromosomes and genetics. So excited to see our little monkey growing and wiggling inside. We will definitely show those photos as well. I know this kind of Congenital heart Defect, like many, are hard to understand.. I borrowed some facts from our Friends the Hamiltons blog about CHD facts.
7 FAQ’s
- What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
- Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
- How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 40,000 babies are born with a defect each year. Tucker has Hypoplastic Left Heart Syndrome (HLHS) and it occurs in 4-8% of babies with CHDs.
- Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
- How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects. The easiest way to know for sure is to have your baby's blood oxygen levels checked. All new parents should ask for this to be done immediately after birth and then again after about 24 hours of life!
- How serious is the problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHDs in the United States each year as die from all forms of childhood cancers combined. (author's note....Can you believe this statistic?? Another fact is that5 times the amount of money spent on CHD research is spent on childhood cancer research!!) Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
- Are things improving? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
Thank you to all who have helped us thus far and all those that have the prayers in their hearts, they are keeping us strong. We love you all and thank each one of you.
With all our love,
The Sock Monkey Family!
Alexis, Vince, and lil Scarlet
