Getting the story right.

Getting the story right.

There was a time – almost 3 years ago, when it would be a VERY big deal if the news media picked up on a story about how often newborns leave the hospital with undiagnosed heart defects.  Even more rare to actually mention newborn screening for heart defects (CCHD) using pulse oximetry.  Now, rarely a day goes by when it’s not in the news!  Just last week, there was a very nice piece in the News-Times (Danbury, CT) – Looking for a Baby\’s Heart Problems, about newborn heart screening. Fellow heart mom Marie Hatcher (Matthew\’s Hearts of Hope) has been an ardent advocate for screening in her state, almost single-handedly advancing legislation and working with hospitals and the department of health.  As much as we LOVE, love sharing these articles and news stories, it seems like there’s always some fact or detail that gets missed.  As a former journalist (waaay back), this is frustrating.  We know a news story only has precious seconds or a minute, and articles must be edited.  But there are a few details that we – as advocates – can’t afford to brush off.  Here’s one:

When a baby passes the screen, parents can be assured that their  baby “does not have a heart defect”.  This is very dangerous territory. Screening with pulse ox is hugely effective, but it does not catch all critical heart problems.  Research estimates it is effective in indicating about 75% of defects, those that typically show up with lower 02 readings.

This is where education is absolutely critical. In training for hospital staff. At the bedside with families. With policy makers. And with any journalist who is trying to do the service of sharing news about this important public health screening.

Here are the facts:

It is possible that the pulse ox reading is normal despite a serious CHD. Your baby should continue to have normal visits with the primary care doctor. Any unusual signs or symptoms in an infant should always be reported to a primary care doctor, including:

  • Shortness of breath – this might be due to a build-up of fluid in the lungs.
  • Difficulty feeding – this may occur because the baby is having trouble breathing.
  • Blue lips and skin – some heart defects can lead to mixing of blue (oxygen depleted) blood from the veins and the red (oxygen rich) blood from the lungs. This may produce a bluish colour of the lips and skin, called ‘cyanosis’.
  • Tires easily - sleeps more than is typical for a newborn or infant.

No current screening tool exists to detect congenital heart defects 100 percent of the time. Pulse oximetry screening should detect most heart defects (those associated with a low blood oxygen level). However, some heart detects may not be found on screening (those not associated with a low blood oxygen level). Parents are advised to review the signs and symptoms of heart defects in infants and children.

Alas, we don’t have editorial license with most of the reporters covering this new screening, but if you are in a position to be interviewed, or to provide a comment or correction, it helps everyone better understand newborn screening for CCHD.

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3 Responses to “Getting the story right.”

  1. Thank you for the truths you wrote about today. My daughter Madison was born with a coarctation of the aorta. We only found out before she was very,very sick because of a calamity of medical errors that led us to a children’s hospital and a great pediatric cardiologist. She had surgert at 7 weeks to repair her heart, she was already in congestive heart failure and now has damage to her left ventricle. She is now a heart happy 2 year old. I believe she would not be here today had we not been warned of the symptoms of CHF. Even as a 5th time mommy I was oblivious to the world of heart defects. Pulse ox testing is a huge step forward, but I pray we don’t forget that we still have a long road to walk to assure that no defect goes missed!

  2. Thank you for this as well. My son was born at a birth center then taken to a local hospital NICU since he was breathing quickly and diagnosed with TTN. He was on a pulse ox for the first 4 days of his life. We almost lost him at 4 weeks old because he had a coarctation of his aorta and led to a massive stroke. He is doing pretty well considering the insult to his brain. Unfortunately, the pulse ox won’t get everything, but it is a great step in the screening process!

  3. Another one here with a coarction of the aorta who nearly lost his life. We actually were in the hospital overnight because of the some “episodes” prior to the discovery of his heart. The pulse ox was only put on his hands. I now wonder if it would have done any good to put in on his feet since his legs had no pulse in them. While pulse ox is not perfect it’s a huge start and am thankful some babies will be saved because of it.