Kristine & Cora's Law: Congenital Heart Defects

I have been putting this blog post off for way too long because I wanted to find the right words to put here. It all sounded great in my head while I was in the shower and the words typed here doesn't seem to want to flow.

I've never met Kristine Brite and have never spoken to her on the phone. I've only chatted with her via Twitter. I followed her through her first pregnancy, offering advice when asked and enjoyed her tweets about how she was feeling.

Near the end of November 2009, I read her tweet about being in labour. I was excited and I was looking forward to her sharing pictures of her baby and getting Mommy updates.

A week later when I was on Twitter, I wondered out loud if Kristine had her baby. A few minutes later I checked my @replies and was told beautiful Cora was born on November 30, 2009 and passed away on December 6, 2009. I was instantly heartbroken.

You see, Cora had an undetected congenital heart defect or CHD. Kristine had a healthy pregnancy, smooth labour and delivery and birthed a healthy baby girl...even the doctors and nurses said so.

Congenital heart defects affects 1 in 100 American babies and 1 in 76 Canadian births. Those are extremely high statistics. For some reason during the early weeks of pregnancy the heart doesn't develop correctly. Some congenital heart defects are from chromosomal abnormalities, but most congenital heart defects are unknown.

If your physician suspects CHD in your unborn baby, they may elect to do an fetal echo that uses sound waves to create a moving picture of the heart. This is usually done at 18 to 22 weeks of pregnancy.

Despite the high statistic rates of babies born with congenital heart defects pulse oximetry is not performed universally after birth. Pulse oximetry involves using a sensor that can be attached to the finger or toe to measure how much oxygen is in the blood.

Why pulse oximetry is not used universally?

From the American Heart Association

In the research reviewed, the test’s ability to detect critical congenital heart disease varied widely, from zero to 100 percent.

According to the statement, most studies that have analyzed pulse oximetry in newborn screening were relatively small, and screening protocols differed with respect to both age at screening and cutoff levels for an abnormal screen.

A normal oxygen reading is between 97-100 percent.

Because oxygen levels in healthy newborns can vary considerably in the first 24 hours of life, the authors note that testing after 24 hours would appear the best strategy. False positive rates were just .035 percent in infants screened after 24 hours.

“The statement is important because there hasn’t been any strong guidance so far regarding the use of pulse oximetry as a diagnostic technique in newborns,” said William T. Mahle, M.D., FAAP, chair of the writing committee and associate professor of pediatrics at Emory University School of Medicine in Atlanta. “Some hospitals across the country have adopted it and others haven’t, so we wanted to review the available evidence and offer a consensus opinion on the topic.”

But Kristine is changing that with Cora's Law.

Kristine Brite and her beautiful daughter Cora is one of the few people to join ranks with other women who I have crossed paths with and who have touched me and have impacted my life in some way although I've never met or spoken to them personally.

Kristine, you're a remarkable woman who has turned a tragedy into something very beautiful. You and Cora are saving lives.

You can help Kristine raise CHD awareness or offer your support through these avenues.

Follow Kristine Brite on Twitter @KristineBrite or subscribe to her RSS Feed

Bookmark or subscribe to her blog Cora's Story

Join her on FaceBook Cora's Story on FaceBook.

Let's support and help Kristine and Cora save lives.