Losing a child to a CHD

I am so thankful that Carlie is considered "healthy" and that we have not had any issues since before her Glenn, but the reality is, many babies die from a CHD each year, each day, and it is so heart breaking! Being a heart Mom, I have followed the stories of MANY families; the first one I want to share is of Baby Cate. I only learned about Cate and her family about a week or so ago, but I was drawn in right away. Her family's faith is so inspiring that when I would read their blog, my heart would ache for them but somehow it felt as though they were comforting us, their readers. Tuesday morning Cate passed away from complications of surgery that she had a couple weeks prior (she had Tetralogy of Fallot), she was just seven months old.

Another family's journey that I have been following is Baby Emily. Emily was born on June 17, six weeks before her due date, with HLHS and was doing well. She had her Norwood on Monday and the updates on Emily's carepage were good; everything seemed to be according to plan. Yesterday I checked her carepage, and I was shocked to learn that Baby Emily had passed away that morning, she was just a week old.

The last family I met through an on-line support group that I belong to. Seamus was born in November 2006 with HLHS. For whatever reason, Seamus had problems recovering from his surgeries. After his Norwood, Seamus was in the hospital for about six weeks. In May 2007, Seamus was taken into surgery to attempt his Glenn and TAPVR correction but the surgeon wasn't sure if Seamus would be able to handle the surgery. Once they opened him up, the surgeon determined that Seamus would not be able to handle it and so it was postponed. In November 2007, Seamus' Glenn was attempted again and this time was able to be completed but a couple of days later, they had to redo his Glenn because of complications. After many ups and downs, Seamus was released from the hospital on Christmas Eve. Things seemed to be moving along smoothly when suddenly, Seamus passed away on January 20. My heart broke for this family, I couldn't believe that they lost their little boy, he was just 14 months old. Through all of this, Kati and Bruce knew that they were meant to parents. They long for another child and have decided that they would like to adopt. This is what Kati wrote on her blog, "...As we work through our grief, one thing keeps coming up, how much we loved being parents and how excited we are to have that opportunity again...We've set up a website and are actively looking for birth parents. We know we're not the traditional adoptive parents that mothers looking for homes for their kids find, but we're hoping that it works in our favor and that something about us resonates with the right person. We're open to a boy, a girl, twins, any shape, any color, as long as they are healthy. As our friends and family, if you hear of any situations where a mother or family is planning to bring her pregnancy to term but can't keep the baby, remember us. We are also open to babies that are a couple of months old. We would love to share the child with the birth family through letters, pictures, and also visits once they are old enough to understand who their "Tummy Mommy" is...". If any of you reading this know of anyone who can help Kati and Bruce become parents again, please reach out to them, they have so much love to give.

I believe that one day all babies born with a CHD will live long and healthy lives, but that won't happen until awareness and research receive more funding. Too many people are unfamiliar with CHDs, I know that I was prior to becoming pregnant with Carlie. As heart Moms and Dads we have to spread our child's story so that one day everyone will be familiar with Congenital Heart Defects and how CHDs are taking the lives of our precious children.