Scary Shit Series – Congenital Heart Defects


There are a couple of reasons I want to write about congenital (meaning present at birth) heart defects in this series. One is to suggest what the hell to do if you’re told your baby has one, and the second it to tell you what to watch out for once your baby is born in case it was missed.

Everybody knows that hearts are pretty important – hence the inevitable freak out if you’re told in an ultrasound that your baby might have a defect in theirs.

Heart abnormalities are among the most common form of birth defects – more than 32,000 infants are born with them every year (1 out of every 125 to 150). Some of them won’t be apparent for many years, while others are a problem right off the bat and need medical attention immediately.


The good news is that almost all heart defects can be treated with today’s medical advancements. Phew, good.

If your baby is diagnosed with a heart defect (often at your 20-week ultrasound), the advice I was given was to get a referral to the best cardiologist you can find before the baby is born. Then make sure the cardiologist and the pediatrician you choose can (and will) communicate with each other. Pretty obvious – although, I am constantly floored at how many professionals won’t play nicely in the sandbox even when a child’s health is in question (but that’s a soapbox I’ll drag out on another day).

Then do your homework and get familiar with your child’s condition so you can make informed decisions. (Check.)

Most importantly, get ready to look and feel like an idiot. I should mention that this goes for all facets of parenthood (see chart here). If you ask questions and you’re met with rolled eyes and an exhale, just remember that there is nobody on the planet that cares more about what happens to your kid than you, so you need to know what the ‘sitch is. You will look stupid and you will often look like a deranged honey badger so just accept it and move on.

Whether you child has, or has not, been diagnosed with a heart defect, here are some of the symptoms to tuck in your back pocket to watch out for:



  • Tires easily during feeding (i.e. falls asleep before feeding finishes)
  • Sweating around the head, especially during feeding
  • Fast breathing when at rest or sleeping
  • Pale or bluish skin color
  • Poor weight gain
  • Sleeps a lot – not playful or curious for any length of time
  • Puffy face, hands, and/or feet
  • Prolonged or unexplained fever
  • Often irritable, difficult to console


  • Gets out of breath during play
  • Difficulty “keeping up” with playmates
  • Tires easily/sleeps a lot
  • Change in color during active play or sports
    (looks pale or has a bluish tint around mouth and nose)
  • Frequent colds and respiratory illnesses
  • Slow growth and weight gain/poor appetite
  • Complains of chest pain and/or heart pounding

Now, I know you see the problem here.

These symptoms are pretty typical on any given day with any given kid (aside from turning blue) so don’t go off the deep end like my friend’s daughter does anytime things get scary and pull your sundress up around your head while making a “IYEEEEEEE” sound like a bomb siren.

If your child has two or more of these symptoms, talk to your pediatrician about it being a possibility and they may give you a referral to a Pediatric Cardiologist. This isn’t a slam on doctors either, if you are coming in worried about a fussy baby that isn’t eating well, then colic, protein allergy and reflux may be the first issues they’ll rule out before they start alarming you with heart talk, so if you are noticing some of the other stuff, pipe up, my honey badger.

“Why in the hell don’t they test these kids for congenital heart defects before they leave the hospital?!” you ask. Well, they do in some places.

It’s called a pulse oximetry screen (or a pulse ox) where sensors are placed on the baby’s skin to determine the amount of oxygen in the blood and pulse rate. The test is painless and takes only a few minutes and is done when a baby is 24 to 48 hours of age, and all hospitals have this equipment (from what I can tell – if you know for sure let me know because I had trouble finding that online).

Not all hospitals do the screening so you may need to ask for it, although, many states and provinces are adding it to their newborn screening routine which is great considering it’s a non-invasive test, that is relatively cheap, easy to do, and it can throw a red flag up on something that can have a devastating impact on someone’s life if left unchecked.

Even though a pulse ox isn’t foolproof, they can detect up to seven possible critical congenital heart defects. If you are feeling especially bold, ask for four limb blood pressures on your baby as well, because it can often catch some of the flags that the pulse ox could miss.


Can you still hear me or are you too far out on the ledge of fear? I SAID ARE YOU TOO FAR OUT ON THE LEDGE OF FEAR TO HEAR ME?!

Okay, congenital heart defects are still relatively rare so it’s unlikely your baby will have one, but I wanted to do this post because I keep reading these heartbreaking stories about families that slipped through the cracks because the heart defect that their child had wasn’t caught and treated early enough simply because a test wasn’t offered and the signs weren’t known.

It’s a good-to-know-hope-you-never-need-it knowledge like CPR or the Macarena.

So put this info in your back pocket, go about your business, and for God’s sake, pull your sundress back down, my beautiful honey badger. You’re scaring the neighbours with your siren screaming.

Great Resources:

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  • A pulse ox caught my daughter’s CHD at one-day-old as she began to go into shock. She survived, and 3 open heart surgeries later, is a happy nine-year-old!

  • We were the unlucky ones. Our daughter was born and we were discharged within 12 hours. Everyone cooed about how perfect she was… She had purple extremities and a subtle flow murmur. Knowing what I know now, I should have demanded a pulse ox, an echo… anything. Everyone told us that both of those things were normal. We went to the hospital the next day for jaundice/PKU testing and it was nearly impossible for the nurse to draw blood. We went back days later for a well-baby checkup. I told the doctor my baby was just too tired, and that she was very off colour. He listened to her heart for 10 seconds and sent me home. On day 8, my baby wasn’t breathing properly, we called an ambulance and within two hours we watched our daughter die on an emergency room table. We had to tell our son that his sister was gone forever. We found out that she had HRHS and upon investigation, it was visible in the ultrasounds, but for whatever reason, it was never addressed. We pushed and pushed to have our regional coroner take a closer look at our case. The regional coroner decided it was too complex for himself and it ended up being reviewed by the chief coroner of Ontario. Our daughter’s case was then reviewed by the paediatric death review committee of Ontario who has found faults with the hospital as well as the ultrasound clinic. Our devastation is compounded every time a medical professional suggests that our daughter should still be alive.

    • I am so, so sorry. I can’t imagine how devestating that must have been. Situations like this just anger me because the system totally failed you and your daughter. I’m truly sorry for your loss.

  • We lost our baby at 21 weeks due to a severe tof diagnosis. Absolutely heartbreaking. It amazes me the tests that could be performed (that aren’t covered by insurance) to find these defects are not done unless there has been a prior issue.

  • My daughter had a CHD and I pushed for pulse ox when she was born and it didn’t catch it. Took me a year of being a crazy mom to find a dr who would take me seriously. FINALLY got her diagnosed and she had open heart surgery at 3 years old. Trust your gut, mama’s!

  • This post is old. I’m gonna’ comment anyway. 🙂 I had 6 ultrasounds during my pregnancy (for various things, 20 week anatomy scan, size, position, etc). Absolutely no problems were detected. I was paranoid throughout my entire pregnancy but assured everything was fine. When he was born blue every doctor and every nurse said it was just bruising from being born to fast. I still don’t know if that’s a real thing. I never would of thought I’d have a baby with a heart defect. I didn’t drink, didn’t smoke meth, didn’t eat lunch meat. When I was packing up to leave the hospital they had to do the pulse ox screening- it was made mandatory in my state just 6 months prior. 12 days later my baby had open heart surgery for a congenital heart defect. I have absolutely no doubt my baby would be dead if it wasn’t for this test. Demand a pulse ox! It’s fast, cheap, easy and pain free and it could very well save your kid’s life

  • I was a baby sent home with an undiagnosed chd …. I was 12 when it was discovered purely by accident after I had an xray because I had a chest infection and an awesome sauce radiologist spotted that I had notches on my ribs and they couldn’t find a pulse in my legs … I had it corrected and see my cardiologist every year I’ve even spawned a baby of my own and whilst I was poked and prodded far more than necessary in my opinion we were both fine here’s a little nugget of information because I have a chd I have a 1/50 chance of having a baby with one xx

  • Just came across your blog. My son is the baby in the CBC Article you posted. Jesse is a very lucky little guy to have been born at a hospital that does pulse oximetry. My daughter was born elsewhere, and they STILL don’t do it at that hospital…such an easy test that saves lives! Thanks for bringing awareness to the importance of asking for this test before being sent home.

  • I’m not sure how old this blog is, but I just stumbled upon it via Pinterest. My son was discharged from the hospital after the pediatrician heard a murmur. We were sent to get an echo done when he was one week old. They found 2 small holes (ASD and VSD). We were told not to be concerned because the holes were so small, and we were never referred to a ped. cardiologist. At 2 1/2 weeks old we took my son in for a weight check because he stopped eating over the weekend and would scream. Hours later we learned he was in heart failure and two days after that he was having surgery to repair a coarctation. He also has a bicuspid valve. I wish I would have known the signs before it happened. I hope this blog helps many mommas. Thank you for writing this!

    • Thank you so much for your kind words and I’m so happy to hear your son’s operation was successful (I read your comment holding my breath there). Fingers crossed a few people will see the signs and catch it before it gets too far : )

  • Let me tell you this shit isn’t fun to find out when you’ve just found out your two week old baby needs a surgery for pyloric stenosis. I’m still slightly angry that it wasn’t caught in my two ultrasounds. I got bombarbed by nurses at the children’s hospital we were transferred to, "Well didn’t you know when you were pregnant?" No bitch leave me alone…. He had a large VSD and could not, could not gain weight! He had already lost weight from the pyloric stenosis and I nursed him around the clock sobbing because he would literrally pass the fuck out and could not stay awake to latch on. I remember frantically opening his mouth and just spraying boob milk into it. Then we gave him breast milk in bottles and he gained a few ounces. Then we put formula into the breast milk…. a few more ounces….then the doctor told me I had to give him high calorie formula and I yelled and cried in the office. Then when my son’s surgery came around when he was two months old and I was served a very large slice of humble pie. There were poor babies who needed heart transplants and had been in the hospital since they’d been born. I recently attended a funeral of one of my baby’s neighbors 🙁 My son was very, very, very lucky. He was in and out of the hospital in a week after open heart surgery. He was 8lbs at two months old when we left the hospital but has continued to gain weight and is now 13 months old and crawling, cruising, assisted standing, and babbles and smiles. I wish I could go back and change my behavior. I was so frustrated and hormonal and hated lugging my son to appointment after appointment when I just wanted to enjoy having a newborn. I now know how blessed we are and now I get to enjoy the rest of my son’s beautiful life.

    • I realize this comment was posted a while ago, but wanted to let you know my son has a similar diagnosis: DORV, TGA, VSD and interrupted aortic arch.. Fortunately it was detected through an ultrasound. All repairs were done in one surgery when he was 2 days old. We are already home from hospital – he will be one month old tomorrow. I’m amazed at how far he’s come in a few short weeks. He’s my little miracle as well.

      There was an immediate need for surgery in our case. I’m so happy your son’s diagnosis was caught in time. Looking forward to reading more about his story.

  • I love your writing style, and this post was really informative, so thank you. But what happened to the Scary Shit Series logo with the Trex and the shark and the guns?

    • The rambo raptor with the shark steed was simply my intro to the series. I’m trying to use it sparingly to maintain its freshness and overall bad-ass appeal ; ) Although, I would happily wallpaper my entire house with it if I could because I love it so much.

  • Unlike the other comments, I do not have a child with this defect, however I am a Mother-Baby nurse and I guess you can say babies are my business 🙂 We started the pulse ox testing at our hospital about 5 months ago and with the most recent research coming out to support this as a way to catch heart defects before discharge I know that it is becoming mandatory for most hospitals around the country. Also, pulse ox equipment should be available in EVERY hospital since it is a basic tool for assessing a baby after birth. I hope this helps 🙂 By the way…love this blog!!

  • Thanks for this. I was one of those mothers whose baby went home undetected. All hospitals have the equipment because it’s part of neonatal resuscitation protocols. November 30 is Newborn Heart Defect Screening Awareness Day (Pulse ox). Would love it if you’d help me spread the word:, the website is under construction so I promise it will be full of resources by the 30th.

  • My son was born with CHD, he had ASD, VSD and Hypoplastic Arotic arch, he had open heart surgery at 2 weeks old, he was NOT diagnosed prior to birth, after birth he developed a need for oxygen, which led to a slew of other things…as far as CHD’s his is a pretty standard repair, they’re hopeful this will be his most invasive surgery, BUT you never know, he sleep with a pulse ox, and has oxygen at night, if only i could go back and talk to my 38 week prego self and give her more information on what the first month of my son’s life was going to be…he will have a second surgery next month for a cleft lip/pallet. Heart babies are strong, resilient, and so loving ,they’re daily reminders of the miracles of life!

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