Congenital Heart Defect Awareness Week

Guest post by Rodrigues

Joaquin waiting for surgery.
Joaquin was twelve hours old when a nurse heard a murmur in his heart.  Minutes later, a technician rolled an echocardiogram machine into the nursery, and attached more machines to monitor the steady whoosh of blood through his pink body.  We were ordered up to a NICU station filled with more beeping machines, bright lamps, and most of all, our worries and questions.  Finally, a cardiologist arrived to describe Joaquin’s three congenital heart defects.

This week is Congenital Heart Defect Awareness Week.  This week also marks one year since Joaquin’s heart surgery at 8 days old.  My memory of the panic, pain and confusion we experienced at that time is much like my memory of childbirth, existing in a protective haze.  A year later, I still bring out those memories in manageable slices.  Today I remember the questions.  Here are some of the big ones.

What is a congenital heart defect?

A congenital heart defect is a heart defect present at birth.  It is the most common kind of birth defect and the most frequent cause of death due to a birth defect.  This is partly because the term covers such a large range of heart problems.  Some heart defects are caught during prenatal care.  Others, like Joaquin’s, are more difficult to detect.  In fact, we had an ultrasound the morning of what ended up being Joaquin’s birthday, and were told everything was normal.

Is it genetic?

Congenital heart defects may be related to genetics, but not necessarily.  This was a particularly important point for us to make to our families.  Once everyone knew about Joaquin’s heart, it was kickoff for the game of “Who gave the baby the heart problems?” Even though our cardiologist informed us that Joaquin’s particular issues were not necessarily inherited, our families soon began tattling on each other’s hearts.  There were lots of defensive claims of healthy hearts tracing through generations.  The thing about this kind of back-and-forth is the feeling that someone must be at fault, which brings us to…

What causes a congenital heart defect?

With such a wide range of heart conditions included in the term, causes are likewise varied.  Sure, some are passed down through genetics.  Some might be caused by a difficult pregnancy or trauma early in pregnancy.  Many have no known cause.  In our experience, it was futile to play “hypothetical causes” with our son’s condition, and a little painful when others did.  I had pneumonia and intense morning sickness during Joaquin’s gestation, and worried that the combination somehow starved his developing heart into deformity.  As everyone tried to guess where Joaquin’s heart went wrong, I secretly dreaded learning that it was my fault.

Joaquin at his 1st birthday!

What can be done for babies born with heart defects?

Again, the wide range.  Some kids will need restricted activity, medication and frequent checkups.  Some will get a one-time surgery and be competing in Iron Man competitions in thirty years.  Joaquin grew out of one heart issue, had surgery for another, and may need surgery and a repair of the initial surgery as his heart grows.  The cardiologist will always be on speed dial.

In the end, I wouldn’t advise family and friends of parents going through our experience to hold back their questions.  Even when they hurt, we knew these questions came from a place of love and worry.  They were asked by people who wanted to understand exactly what was going on and show their mutual concern.  What I would suggest to loved ones is: research.  Nothing shows caring more than being able to say, “So I read about coarctation of the aorta last night, let me see if I have this right…”

As for us?  A year after having his ribs spread, aorta snipped and then sewn back together, Joaquin is your usual toddler.  The most important room in his life these days is the one he shares with his brother.  I’ve stopped panicking when he sleeps for a long stretch at night.  It took the support, love, expertise and unexpertise of many people to get us to this point, and of that I am very aware.

Comments on Congenital Heart Defect Awareness Week

  1. Oh, oh how I feel you. My son has supra ventricular tachycardia and was whisked from the delivery room to the NICU without as much as a word to his father and I. He spent 8 days there, and 9 months on four different kinds of medication. Luckily for us, his cadriologist (the best in our area) declared his SVT resolved until another episode (which he hasn’t had in over a year), so we didn’t have to resort to surgery.
    But I remember the first time he slept through the night and I awoke in a panic, thinking I’d lost him. And every time he’d fall asleep in his car seat I’d bust out my stethoscope from his baby bag to double check his heart rate.
    So though they’re different situations, as the mama of one heart baby to another, I feel you.
    BTW — my son will be two next month. 🙂

  2. my son also had a heart defect called Tetrology of Fallot, he was very purple i only got to see him once when they took him to the one hospital then another where they found it, then spent 2 months there, followed by a surgery when he was 6 months and will have to get a couple more until his heart stops growing, then he also has a pacemaker to boot. but boy oh boy is he just a cute lil ball of 16 month old energy 🙂 its a good thing we have the technology we do today or else im pretty sure he wouldnt be here along with so many other cardio-babies

  3. The website is of Patrons of the Hearts, which is a charitable orginaztion out of Jacksonville, fl that was started by the parents of one of my best friends. Their mission is to To evaluate and treat children with congenital heart disease from underdeveloped countries. They have a great story and had fostered a little baby girl a few years ago from Ethiopia before and after having heart surgery. They took the little girl back to her home in Ethiopia and discovered that her mother could not take her back because of a number of issues. Having already fallen in love with this baby girl, they brought her back to America and have adopted her. She is one of the most adorable and spunky children I’ve ever met and just amazes their family each and every day.

  4. My partner’s sis has a congenital heart defect, and at 22 is proof positive that you can grow up to be a healthy, happy adult with a heart defect! 😀

  5. As a young woman (offbeat bride sneaking over here for the awesome content!) with a congenital heart defect thank you so much for writing this! I never knew there was an awareness week. I too had surgery young (4 months) but want you to know I’m leading a largely normal life at 23. While we might never ride roller coasters and the pre-dentist trip antibiotics can be a pain it could be worse. I might even be able to carry a child someday if the cardiologist feels my heart is strong enough.

  6. My son was born with coarctation of the aorta, VSD and ASD and had surgery at 10 days old. How similar we are! Glad to see you all are doing well, and we are too. Thanks for posting and bringing awareness to this week!

  7. So so glad to see this! I had SVT from birth on, and I had surgery to correct an atrial-septal defect at age 2 — 30 years ago. It was rough, and now that I’m pregnant I’ve been pretty terrified of passing something similar along, but my doctor has been spectacular.

  8. My oldest daughter Zoe, was born with Hypoplastic Right Heart Syndrome (HRHS), Pulmonary Atresia, and Ebstein’s anomaly. She has had 3 heart surgeries all before she was 4 years old. She has had multiple trips to the cath lab. All of these meant a trip out of state as we live in Alaska and her surgeons are in Seattle. (BTW I LOVE Seattle Children’s Hospital! Cannot say enough good things about it!). She is now 7 years old, happy, healthy, full of little girl drama, and you would never guess to look at her she had such a rough start. I am a heart mom through and through. Yes, there is CHD awareness week! CHD Awareness day is on Valentine’s Day! It’s a Day for Hearts for more than 1 reason! My girl is my walking talking miracle child, and I cherish every day with her.

  9. Thank you for this. My husband was born with a congenital heart defect, has had two heart surgeries and will need at least one more. What I find most encouraging is the growth of adult congenital heart programs at hospitals around the world. People with congenital heart defects are living longer and longer, which means new kinds of care are being developed to keep up.

    • It’s really great, and actually still an area that needs growth. Surgeons do an awesome job of making sure these kids survive and thrive, but when they hit adulthood it can be hard to find a doc who has the understanding of their condition. So many of them work with acquired heart issues. Are you familiar with the ACHA? My daughter is 8 but I get info emailed to me from them.

      • There is a LOT of focus on keeping his heart healthy and safe until it is fully grown, because having to replace a valve or fix his aorta increases the chance that those fixes won’t grow with his body over time. With all the advances in caring for little ones with heart defects, I can imagine that the number of adults needing care for these conditions would skyrocket, too. I hope that influences more development. I feel unspeakably lucky that my son was born in this place and time, for sure. Even a few years ago, major open-heart surgery was needed for procedures that can now be done by balloon catheter. It is still terribly frightening and carries risk, but the progress and hope for little guys like him is truly wonderful.

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