Congenital Heart Defects

More importantly than Valentines Day, today, Febuary 14th, also marks Congenital Heart Defects Awareness Day. On a day we spend considering the matters of the heart, take a few minutes to think about just how much your heart matters.

1 in... 100 babies born, will have some form of a CHD. It comes down to approximately 1 baby every 15 minutes in the United States. This isn't an uncommon problem - it's far TOO common. However, it's not something that anyone expects. No one plans this kind of thing in their life. No one wants to see their baby hooked to machines and monitors. When we imagine our lives, our children's lives, we see them as being bright eyed and vibrant, playful and energetic...the way every child should be, should have the chance to be. However, for 1 in every 100 babies, and their parents, this is not how life plays out. There is a new land, a new world, and frankly - it's scary.

We were the lucky ones. My daughter, Gabby, was diagnosed with heart defects when I was 18 weeks pregnant with her. As terrifying as it was, and as grim as her prognosis was, I KNOW without a doubt, that in getting a diagnosis of heart defects before she was even born, we were incredibly lucky. Far too many babies aren't diagnosed until after birth - until after problems begin. Babies that don't have enough time before they need life saving surgery, who are diagnosed to late. It's not to say that a prenatal diagnosis is a fail proof way to save your child...but when your child's battle is being waged inside their little bitty body, you want any advantage you can gain.

Even if your baby looks healthy prenatally, there is a fabulous, reliable, inexpensive test you should be requesting for your newborn - a pulse ox. Oxygen saturation levels can be GREATLY effected by CHD, and this is a test that takes moments and can save your child's life. Several states have passed laws requiring newborn screening for CHD. Such mandate is under consideration in several other states. Many hospitals are screening babies WITHOUT mandate, simply because it is known to be in the best interest of the babies. Request Pulse Oximetry. Spread the word about it. One baby with CHD that goes home without a diagnosis, is one baby too many.

I thank God EVERY SINGLE DAY for guiding the hands and hearts of Dr. Gary Loffland, and all of the other FABULOUS doctors and nurses we encountered in our time at Children's Mercy Hospital in Kansas City, Missouri. They have saved the lives of my amazing Gabriella twice now, once at 7 weeks when they did surgery for her aortic coarctation, and again 5 days after she turned 3 when they replaced her Mitral Valve. Without them, my beautiful baby girl, would be my beautiful angel. There are not enough words of gratitude in this world for the amazing gift they gave me, and everyone else who knows Gabby - watching her grow up into the inspiring young lady she is becoming. I hope someday I can be half as brave as my 5 year old. She is truly my hero.

I am including a link, to Cora's Story. Cora was a sweet, tiny, beautiful little girl, who was born with CHD. She was diagnosed too late, and is now watching her family from above. Cora's family, has spent over three years now, pushing for CHD awareness and pushing for mandates requiring Pulse Oximetry. Because this test was not done on Miss Cora, she isn't here today. Click Here to Read Cora's Story Also, the Febuary 14th Project, Every 15 minutes, as put together by Cora's amazing Momma. Every 15 Minutes....

Please, familiarize yourself with the common signs and symptoms of CHD. Watch your child, and push for pulse ox. Spread the word. Maybe someday, no baby will slip through the cracks.

Cora lived about 30 minutes from me and your story is nice Im glad your daughter is well I cry every heart story I hear like Cora story baby Liam im glad your family had a good outcome and pray for the children who are going through CHD ..

I'm a heart mama to a beautiful little boy. Today is actually his 2 year anniversary to his big OHS repair.

He was born with multiple defects.

He wasn't diagnosed until after he was born. He was born blue and wheezing. His saturation levels were 60% on 40% oxygen. They plummeted to 40% on 60% oxygen. So they had to operate, luckily only key hole, he was 2 weeks old. He had another at 6 months. And a full repair on the 15th feb two years ago. He spent his first birthday in the children heart ward. We shared cake with all the heart kids in there.

His entire story is on my profile. Along with a link to his OHS journey.

my son was also not lucky enough to be diagnosed prenatally. just moments after birth it was apparent something was very wrong. by the time someone thought to do a pulse ox, it was in the 30s. he was life fleeted to a bigger hospital and almost died 3 times on they way there.

thankfully mine has a happy ending tho. we are 3 heart caths and 2 OHS out with more in the future but he is a thriving 15 month old who im thankful for every day.

my little guy wasnt diagnosed prenatally. he had TAPVR. emergency open heart surgery at 36 hours old, now at 17 months is doing fabulous.

My daughter wasn't diagnosed until after birth either. My doctors suspected something was wrong but she had other health issues that were causing the heart defects to be overshadowed. She was born with VSD, ASD and a transitional AV canal but thankfully didn't need surgery for any of her heart issues. She will be going to see her cardio next year just to make sure everything is still ok.

I just stumbled upon this and I'm so glad your daughter is doing well. My DD was diagnosed the day after she was born with a VSD. At a week, we went to Utah to see how bad everything was. She had multiple defects, but it was the hurry up and wait game. That game ended in March of 2010, when an Aortic Valve leak was detected on a routine echo. By August she was on the table for her OHS and she is now a happy, healthy 4 year old.
With DS, my Midwife scheduled a Fetal Echo when I was 24 weeks to make sure all was well with him. When he was born, he was hooked up to the pulse ox, listened to and x-rayed to make sure he was good to go and he is, thankfully.

Cora's story is sad, but I'm glad that the need for pulse ox at birth is being pushed.

Thank you for posting this.  

Quoting Elle With Three &1/2:" More importantly than Valentines Day, today, Febuary 14th, also marks Congenital Heart Defects Awareness ... [snip!] ... symptoms of CHD. Watch your child, and push for pulse ox. Spread the word. Maybe someday, no baby will slip through the cracks."

My child was born with a couple heart defects. My levels were off at my drs so I was sent to have a 2D ultrasound and they had me all prepped for a child with down syndrome, and I didn't know until she was born and blue that she had heart defects. :/ She was born with ventricular septal defect which was fixed later that night after she was born, and transposition of the great arteries that was fixed with open heart surgery five-days later.

I am not sure what the chances are of another child with it, but at my specialists ultrasound visits, everything is normal, but tbh, I won't believe any of it until he's born without any problems. I'm just worried because the first time they had no clue.

If anybody has a child with TGA or VSD, how often does your child see a cardiologist? My daughter goes once a year, next visit in April, and it may be changed to every couple years they said at her last appointment.

<blockquote><b>Quoting UH-LEX-US:</b>" If anybody has a child with TGA or VSD, how often does your child see a cardiologist? My daughter goes ... [snip!] ... daughter goes once a year, next visit in April, and it may be changed to every couple years they said at her last appointment."</blockquote>



My kid has DORV w/ ps, VSD and TOF.

He saw the cardiologist, every other week, every other month, then every 6 months and now it's once a year.

Quoting Mummy-2-2-Monsters:" <blockquote><b>Quoting UH-LEX-US:</b>" If anybody has a child with TGA or VSD, how ... [snip!] ... ps, VSD and TOF. He saw the cardiologist, every other week, every other month, then every 6 months and now it's once a year."

How old? I'm hoping mine can be every couple after April, but really once a year is no biggie. I know everything is okay but I get nervous for the appointments. She had the same doctor since birth until last year, and I don't care for the new doctor. Always looks too serious with results just scares me sometimes.

<blockquote><b>Quoting UH-LEX-US:</b>" How old? I'm hoping mine can be every couple after April, but really once a year is no biggie. I know ... [snip!] ... birth until last year, and I don't care for the new doctor. Always looks too serious with results just scares me sometimes."</blockquote>



He is 3.

My daughter goes once a year. She's actually scheduled for an Echo this Wednesday. She had OHS for PS, VSD, muscle bundle in her right Ventricle and Aortic Valve leak.
I'm sure if the Echo goes well, we will probably be going every two years.

Quoting Monique and Dominic's mom:" My daughter goes once a year. She's actually scheduled for an Echo this Wednesday. She had OHS for PS, ... [snip!] ... in her right Ventricle and Aortic Valve leak. I'm sure if the Echo goes well, we will probably be going every two years."

That's good   Doctor told me 2 visits ago it should be every few years as she gets older, and she's gonna be almost 5 by the time she goes so.  

Quoting UH-LEX-US:" How old? I'm hoping mine can be every couple after April, but really once a year is no biggie. I know ... [snip!] ... birth until last year, and I don't care for the new doctor. Always looks too serious with results just scares me sometimes."

my son was born with D-TGA and we go every 3-4 months, hes only 16 months old now tho it would scare the crap out of me to only go every few years or even once a year id rather go more often lol