The Words No Parent Wants to Hear

“There are some issues with Evan’s echocardiogram.”

Kendra took the initial phone call from the NICU nurse, called me, and relayed the message. There was something wrong with Evan’s heart, but they wouldn’t elaborate until I arrived at the hospital for his 8pm feeding. I hung up the phone and held back tears as I pushed my dessert plate away from me. My mom and I had gone out to Boston’s North End with two of her friends for restaurant night, and planned on heading to the hospital after dinner to visit with the twins.

EvanEvan was born with a heart murmur, as was Kate. Many newborns have them, and generally they are not indicative of a problem with the heart. However, Evan’s murmur was loud – enough so that as we approached the date he would be discharged from the NICU, the neonatologist ordered an echocardiogram, “just in case.”

When I arrived at the hospital, the nurse practitioner briefly explained what the cardiologist from Boston’s Children’s Hospital had discovered – Evan had a small hole in his heart, and an extra flap of muscle inside his right ventricle. Both had formed in utero around 25-28 days gestation. She assured me it wasn’t life threatening, nor emergent. Somewhat relieved, I called Kendra and let her know the news.

On Thursday afternoon, I met Kendra at Addie’s preschool, and we drove into Boston to meet with Evan’s cardiologists. (I still can’t believe my ten-day old son has a team of cardiologists.) As we listened to them explain his heart defects in greater detail, we quickly ascertained that his condition was much more serious than we had understood. Evan has one of the most common congenital heart defects – a ventricular septal defect (VSD), coupled with one of the rarest – a double-chambered right ventricle (DCRV).

Ventricular Septal Defect

Image courtesy the American Heart Association

A VSD is a hole in the wall that separates the heart’s left and right ventricles. Many times these holes are so small that they either close up on their own, or cause no adverse effects. When they are larger, as is Evan’s, they allow blood to flow back and forth between the two lower chambers of the heart, which causes blood to flow backward into the lungs, making both the lungs and heart work harder. Symptoms include failure to grow, a blueish tint to the skin, easily tiring during physical activity, and rapid breathing.

Unlike VSDs, which are one of the most common congenital heart defects, Evan’s other defect – DCRV – makes up approximately 1.5% of all cases of congenital heart disease. Because of this defect, Evan has a random extra band of muscle around the interior lining of his right ventricle that effectively splits the chamber in two – hence the name, double-chambered right ventricle. Right now, this defect is working in his favor as it is obstructing some of the backflow of blood into his lungs. If it was not present, the size of his VSD would require more immediate surgery, but instead, it has bought him some time to see if the VSD gets smaller or closes.

If by some miracle the VSD closes, and the muscle band in his right ventricle regresses, he effectively will be cured. Obviously we are praying for miracles, but the more realistic possibilities end with open-heart surgery. The VSD could close, but the muscle band grow larger; the VSD could remain open and the muscle band grow larger; the VSD could remain open and the muscle band could regress. Only time will tell what the future holds for Evan.

Right now Evan is thriving and breathing easy. He has no outward symptoms of his heart defects. However, infants’ blood vessels take four to six weeks to fully open, so things may change in the next two months as the blood begins to flow faster through his body. We have an appointment with his cardiologist in two weeks to assess his progress.

Kendra and I are trying to stay positive. On the plus side, his particular defects can be fixed (albeit with open-heart surgery). The prognosis for a long, healthy, active and adventurous life is great. Evan has already proven to be a fighter, and we will support him as his grows older and conquers this hurdle.

Evan

About Jen

Outdoor adventurer and traveler. Writer, Photographer & Communications Professor. Wife. Mom of twins plus one. Tubbs Snowshoes Ambassador. Blogger at gayfamilytrips.com.

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39 Responses to The Words No Parent Wants to Hear

  1. Meghan J. Ward August 31, 2013 at 11:06 pm #

    Sounds like your little man is in good hands. I’ll be thinking of all of you as you settle into this news and take steps to getting him in tip-top condition.

    • Jen September 15, 2013 at 1:23 pm #

      Thanks Meghan :D

  2. sjcourchesne August 31, 2013 at 11:17 pm #

    Indeed, it is something no parent wants to hear. I’ll be thinking of you guys and hoping for a uncomplicated resolution. And congrats on your babies!

    • Jen September 15, 2013 at 1:25 pm #

      Thank you :) It’s easier to keep positive with all the thoughts and love being sent our way!

  3. Nina August 31, 2013 at 11:46 pm #

    I have a friend who had this issue. I can safely say he has lived a very happy and active life to date. Praying for a miracle!!!

    • Jen September 15, 2013 at 1:17 pm #

      Thanks for the positive thoughts :)

  4. Melissa Avery (@melissabravery) September 1, 2013 at 12:02 am #

    Praying for your little boy. He’s precious, a little fighting guy.

    • Jen September 15, 2013 at 1:26 pm #

      Thanks Melissa :D

  5. J & B September 1, 2013 at 5:55 am #

    Our thoughts and prayers are with you all. Thank you for sharing.

    • Jen September 15, 2013 at 1:25 pm #

      Thank you for the thoughts and prayers – we will take any we can get :)

  6. Cat Marcoux September 1, 2013 at 10:50 am #

    My best friend growing up had a heart defect and ended up having open heart surgery as an infant (1986). She has lived a very happy, healthy and normal life and is currently pregnant with baby #2. I can’t imagine what you gals must be going through, but I wanted to share a story with a happy ending. I’ll be thinking of you and sending positive thoughts your way. Remember, babies are tougher than they look! :)

    Cat

    • Jen September 15, 2013 at 1:17 pm #

      Thanks Cat :) So far he’s proven to be a strong little bug :)

  7. JessLif September 1, 2013 at 11:52 am #

    Sending you so many many good thoughts and thoughts of strength. Your incredible family will pull together and that is bound to help all of you. I will be thinking of you!

    • Jen September 15, 2013 at 1:17 pm #

      Thanks you! We appreciate the positive thoughts and energy!

  8. Mary Ham September 1, 2013 at 4:22 pm #

    Saying a prayer and keeping my hopes up that the problems will correct themselves over time.
    However….if that is not case then medical intervention is top notch in this area and thank God for medical insurance……stay strong and positive….

    • Jen September 15, 2013 at 1:18 pm #

      Thanks Mary! I am so glad we have good insurance and Boston hospitals!!!

  9. twogromsandamom September 2, 2013 at 2:15 am #

    Hang in there, mamas. Your baby is in excellent hands and you’re surrounded by a loving community that will help you through this. Sending my warmest thoughts.

    • Jen September 15, 2013 at 1:18 pm #

      Thanks for the warm energy :) We are lucky ladies!

  10. Deb and Dee September 2, 2013 at 9:15 pm #

    Dee and I are sending “shout outs” to the universe that Evan will continue to thrive and conquer…..as his two moms hold the most beautiful fortitude to help carry Evan (and ALL of you) through this. XO

    • Jen September 15, 2013 at 1:18 pm #

      Thanks ladies!!!! Hoping to see you soon!

  11. Mommy Hiker September 3, 2013 at 11:16 am #

    Sending you all of our love and positive, healing energy from LA!!

    • Jen September 13, 2013 at 9:12 pm #

      Thanks :)

  12. Velo Mom (@velomomjen) September 3, 2013 at 6:00 pm #

    Miracles do happen and remaining positive while accepting the situation is the best thing you can do. Your strong loving family will get through this! In the meantime I will keep you all in my prayers and thoughts.

    • Jen September 13, 2013 at 9:12 pm #

      Thanks Jen! :) You have been in ours as well – you continue to inspire me with your strength.

  13. 911shazza September 3, 2013 at 11:10 pm #

    Will say an extra prayer for you. I still vividly remember our NICU days. So scary!! Sounds like Evan is in good hands. And sounds like he is quite the little fighter!!

    • Jen September 13, 2013 at 9:12 pm #

      He is a fighter. I feel like now that we’ve been through the NICU, we’re part of a secret society… it’s not really an experience you can fully describe, right?

  14. Rich Kolb September 6, 2013 at 10:55 am #

    I have a friend who is a heart mom, if you’d like I can point her your way to see if she has anything to share.

    • Jen September 13, 2013 at 9:11 pm #

      I would love that. Thanks Rich!

  15. Aaron September 10, 2013 at 4:35 pm #

    Thanks for sharing you story. Sending positive energy you way :)

    • Jen September 13, 2013 at 9:10 pm #

      Thanks Aaron :)

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