On May 21, 2009, Andy and Brandi Mead met during a lunch hour for a routine OB appointment and, very unexpectedly, Sydney Mead was born a few hours later. The events that unfolded after this moment have been everything but ordinary and the Mead family has grown in faith and patience during the past several six months.
Sydney Mead was born in Jackson, Mississippi and spent 110 days in hospitals before arriving at her home for the first time on September 4, 2009. She was transferred after birth to Children’s National Medical Center in Washington, D.C., where she had open-heart surgery.
Sydney has a condition called Williams Syndrome. It’s a genetic disorder that affects about one in 30,000 newborns and is commonly associated with congenital heart defects. Sydney’s heart condition is known as coarctation of the aorta, which involves a narrowing of the large artery exiting her left ventricle. Part of her aorta was narrowed, making it hard for her heart to pump blood through the artery and on to the rest of the body.
Ani and Jeremy Karg are the parents of four daughters, Madi – 9, Selah – 6, Veiyah – 1, and Aderah, Veiyah’s twin, who passed away on Sept 10, 2008 before she was born. Veiyah and Aderah were born on Sept 25 2008, Veiyah with serious heart complications. Veiyah is fighting her battle daily, and from the sound of her at home in the background during the interview for this story, she is up for the fight. Over the past year, Veiyah has had several emergencies, and right here, right now, she is doing well.
Veiyah at age 3 weeks, at her first BT shunt surgery
As Ani and Jeremy went through these emergencies, and before Veiyah had her first shunt implanted in her heart, the chief surgeon told them that they needed to be in the present moment each day with their sweet Veiyah, don’t hold her back, let her live her life in her own way, at her own pace. He told them to live in the moment.
Ani and Jeremy have learned the most important thing for them as a family is to “Be Right Here, Right Now.” They don’t spend time contemplating the future – there is not time with their busy household of three children, one who needs constant care. And, they don’t want to think about what the future holds because they know that their lives can change, literally, in a heartbeat. What they do focus on is making sure Veiyah has all the opportunities for improving through surgery and medication. They trust in God, and they trust their doctors to find the best possible answers. They focus on their family in each moment, drawing close together, supported by extended family, friends, Jeremy’s work colleagues, their church in Cedar Rapids, Iowa, and the Erika Kate Foundation. Read more
Lauren at CHONY pre-transplant
I will admit that I did not truly understand or appreciate the meaning of Thanksgiving before this year. For me, Thanksgiving was about finding the perfect turkey, scouring the pages of Bon Appetite for the best side dishes, eating dinner with those I loved, saying a blessing over the meal, and then bracing for the holiday gift buying rush.
It is a life altering experience to have an 8 yr old child in the ICU on cardiac and respiratory life support awaiting a heart transplant. While she was held in a drug induced coma, I had many days and nights to reflect on how we lived our life. It is so easy to get caught up in the hustle/bustle of the day. I realized I had let many things slide through the cracks. My career was important and I loved it but it secretly put a wedge between me and my family. I was caught in the desire to succeed. In an instant, as my daughter’s health went from perfect to failing, the perks that went with the career suddenly meant nothing. All that mannered was the health of the little girl whose face peeked out from behind the blanket. I realized I had not spent enough time with her. I realized even though my son excelled in school and swimming, he still needed his mom and was so worried about his sister. The things that I had worked so hard to acquire meant nothing, indeed, I wished I had none of it, it was truly not important at all.
Our children’s pediatrician had said to me many times that the most important thing in life is your health. How true is this? I wrote constantly about the days spent in the hospital. I journaled almost every day. I think this entry sums things up…. Read more
Mark and the Berlin Heart
In late Summer, 2002, Melissa Kisner, from the Cleveland suburb of Parma, Ohio, was entering the final weeks of her third pregnancy. Her first and second trimester had passed uneventfully, but late in her third trimester, her obstetrician was growing concerned about the apparent small size of the baby she was carrying. A detailed ultrasound at 38 weeks revealed a cause for concern. Melissa’s baby, a boy to be named Mark, was in heart failure due to a critically stenosed aortic valve. Melissa was frightened about the finding but was comforted to know that a team of cardiologists at Rainbow and Babies Children’s Hospital in Cleveland, Ohio was up for the challenge. Read more
This month EKF is remembering Ariyan Elle-Marie Ferdinand, who would have been 4 years old on August 16th. Ari had been treated for dilated cardiomyopathy since she was 4 months old. Ari passed away on April 20, 2009 as she was waiting to receive a heart transplant at Children’s Hospital at Montefiore, in Bronx, NY.
In the aftermath of Ari’s passing, her family is trying to focus on the good memories, the way Ari lived with such spirit, and how she touched all those around her. Ari’s mother, Aschelle, says “We laugh and talk about her all the time and we believe that she really knew how to live.” They always called her ‘the trooper’. Ari didn’t want to be different, so she just kept going, not slowing down, always doing exactly what her brothers were doing. She was an outgoing, positive, and happy little girl who loved Elmo, Dora the Explorer, and dancing. Even when hospitalized, on good days she was talking with everyone and reminding the nurses what to do. Read more
