What to Anticipate When Your Baby is Diagnosed with a Congenital Heart Defect

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After the exhausting experience of labor and delivery, the last thing any new mother expects to hear is, “Your baby has a congenital heart defect (CHD).” In my situation, my daughter, Lily, was diagnosed with Transposition of the Great Arteries—an issue that necessitates immediate surgery to save her life. Suddenly, I found myself navigating the complicated world of cardiologists and ICUs, with Lily taken from my arms before I could even experience her first bath or nursing session. Instead, she was subjected to endless medical procedures, and while the medical staff tried to explain her condition, I was overwhelmed and needed straightforward guidance.

If you find yourself in a similar position, here are some practical tips that I desperately wished I had during those initial days:

1. Holding Your Baby Requires Preparation. Every new mom looks forward to cuddling her baby. However, with a CHD infant prior to surgery, there will be multiple wires and IV lines connected to her. Expect a central line at the umbilical cord site, along with other IVs in her hands or feet, plus monitoring wires. Before attempting to hold her, make sure you are comfortable and have taken care of your own needs—like using the restroom or grabbing a snack. Once she’s in your arms, returning her to the bed can be tricky.
2. Breastfeeding Might Not Be Possible. The PICU nurses may encourage you to nurse if that was your plan, but don’t be disheartened if it proves difficult. The numerous lines and a CHD baby’s labored breathing can make breastfeeding challenging. She might be on a breathing machine (CPAP or ventilator), which makes nursing impossible. If you can’t breastfeed before surgery, don’t worry. I didn’t nurse Lily until she was six weeks old, and we successfully transitioned from bottle to breastfeeding for two years. Don’t let this add stress to an already overwhelming situation.
3. Be Prepared for a Fussy Baby. While it might seem obvious that a sick infant would be upset, there are underlying reasons. Some babies receive a hormone called prostaglandin to keep a crucial heart hole open until surgery, which can cause fever and irritability. Additionally, CHD infants often can’t be swaddled due to the need for monitoring. You can provide comfort by gently pressing on her arms, simulating a swaddling effect.
4. A Spinal Tap May Be Required. The term “spinal tap” often evokes fear, but it’s a necessary procedure to ensure your baby’s health before major surgery. It tests for infections and is standard protocol for open-heart surgery.
5. Rest Up Before Surgery Day. Leaving your baby in the PICU might feel unbearable, but resting will better equip you for your child’s recovery. Consider having a trusted friend or family member stay with her overnight while you recharge at home.
6. Expect Emotional Ups and Downs. Life in the PICU is filled with anxiety. Monitors will beep if a vital sign drops, and it’s easy to obsess over the numbers. Understand that what’s “normal” for healthy infants may not apply to your CHD baby. While a typical newborn has oxygen levels above 95%, babies with CHD may be in the 70s or 80s. This is expected, and the brain is the last organ to be deprived of oxygen.
7. Visitor Restrictions Will Apply. Most ICUs limit visitors to immediate family, and during cold and flu seasons, children under twelve may not be allowed. If you have siblings at home who can’t visit, share pictures and videos of the baby to keep them involved.
8. Remember That Many CHDs Are Correctable. As surgery day nears, practice relaxation techniques. Have friends bring meals and help with chores. Keep this reassuring thought in mind: many children not only survive but thrive after heart surgery.

Lily is now seven years old, and I often forget the severity of her early condition. Though those days felt endless, they eventually became just a memory. If you’re seeking more insights, check out this blog post for additional support. Also, if you’re considering at-home insemination, Make A Mom offers reputable syringe kits designed for ease of use. Additionally, Progyny’s blog is an excellent resource for navigating pregnancy and home insemination.

Summary: Navigating the world of congenital heart defects can be overwhelming for new parents. From managing breastfeeding challenges to understanding medical procedures, it’s essential to stay informed and seek support during this difficult time. Remember, many children with CHDs go on to lead healthy lives after surgery.