Friend
I am writing to you to ask for your assistance in raising awareness of Congenital Heart Defects (CHDs). Approximately one in every 115 to 150 babies born in the United States has a congenital heart defect (http://www.congenitalheartdefects.com/stats.html). They are the most common birth defects. Between your show and your magazine, you reach millions of people and can share information about Congenital Heart Defects with your viewers and readers. Increasing awareness of these birth defects is one of the first steps to preventing them.
Until recently, I didn’t know anything about CHDs and how they can impact a family and a community. That all changed in January 2009. In January, Jessica, a member of my church family, gave birth to a baby boy. His name is Ethin. Ethin was born with Hypoplastic Left Heart Syndrome (HLHS), a condition where the left side of his heart is severely underdeveloped. Treatment for this condition consists of a series of three separate open heart surgeries to reroute blood flow so that Ethin’s heart can function to the best of its ability. Jessica was finally able to hold Ethin just before he underwent his first open heart surgery when he was six days old. Ethin had some trials after his first surgery and so did his mom. Jessica has three other children and she was not able to see them for a couple of weeks after Ethin was born because of the distance between the hospital where Ethin was being treated and where they live. When Ethin was three weeks old, another family that was on the same journey, lost their baby girl. She was also three weeks old and had the same heart defect as Ethin. Jessica had become very close with this family as Ethin and their daughter shared the same room for a couple of weeks. Finally, just a few days shy of his one month birthday, Ethin came home. This was a happy but uneasy time for his mom. She was happy to have Ethin home, but uneasy as they were also hours away from the doctors and nurses who had taken care of Ethin since he was born. Unfortunately, Ethin was only home for about ten days before he made an emergency trip back to the hospital. He was there for about two weeks. Ethin came home near the end of February and he and his mom started to work on finding their “normal”. In addition to all the new baby things, there were medications and doctor appointments and the concern about keeping Ethin healthy. This time Ethin was home for about two and half weeks before illness took him back to the hospital – first to the local children’s hospital and then back to the hospital where the specialist are. Currently, Ethin is still in the hospital. On April 1, Ethin had his second open heart surgery. This surgery would not usually have been done until he was between four and six months of age; but because of Ethin’s health, the doctors felt he needed to have it done sooner. Ethin had serious struggles after this second surgery and six days later had to go back for another open heart surgery. This helped and Ethin’s health stabilized at least for a while. On April 16, Ethin was again in surgery. This time it was not an open-heart surgery, but a surgery to correct a complication from his previous procedure. Ethin is again on the mend. He is a fighter and so is his mom.
As a member of Jessica’s church family, I have had the privilege to pray for her and her son. However, I can not fully understand what she is going through on a daily basis – the ups and downs she experiences as her son fights to live.
As I mention before, just a few months ago I didn’t know anything about congenital heart defects. Since Jessica has had Ethin, I have come to know about another girl that lives in a nearby city that also has HLHS. I was listening to the radio one day and just caught a small piece on a news update about HLHS and a local benefit dinner. I checked the local stations website and found out that there was going to be a benefit dinner held to raise funds for a little girl named Sofi who has HLHS and is waiting for a heart transplant. Sofi has had the first two open heart surgeries to treat her condition but because of something that is happening with her heart, she needs a transplant.
These kids are fighters and they are full of life when they are healthy. Unfortunately, even small things (a cut, a cold) can turn into life threatening events for them and many do not make it though the challenges they face. That is why I think it is so important to bring about awareness of CHDs. As awareness increases about CHDs, hopefully funding for research into the cause, prevention and treatment of congenital heart defects will also increase. The ultimate goal of this effort is better treatment and prevention of congenital heart defects.
Thank you, Ms. Winfrey, for taking the time to read my letter. I hope you will consider helping this cause.
Sincerely,
Deanna Traxler
6/29/09
It is with great sadness that I am adding a post script to the letter
that I originally wrote in April. On Saturday, June 27, Ethin went
to be with Jesus. My heart is breaking for his mom, Jessica, and his
sisters and brother. Ethin was doing well and they were making plans
for him to come home in early July. Jessica had come home to attend
a benefit that was being held for her family. During the benefit,
she received a phone call that Ethin had coded and they were working
to keep him alive. I don’t believe I will ever forget the look of
shock, disbelief, and fear on Jessica face as she rushed out of the
building to get back to the hospital. On the way to the hospital,
she received the phone call from the doctors that there was nothing
more that they could do for Ethin. Ethin, her “CHD Warrior” was now
an angel. Too many parents have had to say good bye to their babies
because of a congenital heart defect.