After the emotional rollercoaster of labor and delivery, I received news that no parent wishes to hear: “Your baby has a congenital heart defect (CHD).” In my case, my daughter, Lily, was diagnosed with Transposition of the Great Arteries, a condition requiring immediate surgical intervention to avoid fatal consequences. Suddenly, I found myself immersed in a world filled with cardiologists and intensive care units, as my baby was taken from my arms and placed into the care of medical professionals, missing all the typical first moments like her first bath or nursing session.
If you find yourself in a similar situation, here’s some practical advice that I desperately needed during those initial days:
- Holding Your Baby May Require Assistance
Every new mom longs to cradle her newborn. However, babies with a CHD will likely have multiple wires and IV lines attached to them. Expect a central line at the umbilical site and other IVs in her hands or feet. Ensure you are comfortable and have taken care of your needs before attempting to hold her, as transitioning her back to the bed can be challenging. - Breastfeeding Might Not Be Possible Right Away
While the nurses in the Pediatric Intensive Care Unit (PICU) may encourage you to breastfeed if that was your plan, don’t be disheartened if it proves difficult. The medical equipment and your baby’s labored breathing can complicate nursing. Even if you can’t breastfeed before surgery, you will have the opportunity to try again later. In my case, I didn’t start breastfeeding Lily until she was six weeks old, and we eventually weaned off the bottle and successfully breastfed for two years. Remember, feeding should be as stress-free as possible. - Prepare for a Cranky Baby
It’s common for infants with CHD to be fussy, and there are several reasons for this. Often, these babies receive prostaglandin, a hormone that helps keep a necessary heart opening from closing. This medication can cause irritability and fever. Additionally, since swaddling is often not an option due to the medical equipment, you might simulate that comforting embrace by gently pressing on your baby’s arms. - A Spinal Tap May Be Required
While the term “spinal tap” can be alarming, it’s a standard procedure to ensure your baby is healthy enough for surgery. This test checks for infections or meningitis and is vital before major operations. - Rest Before Surgery Day
Leaving your baby in the PICU overnight can be daunting, but being well-rested will enable you to support your child’s recovery more effectively. Consider having a trusted friend or family member stay with your baby while you take the time to recharge. - Expect Emotional Ups and Downs
Life in the PICU can be a whirlwind of emotions. Monitors will beep at every dip in vital signs, and it can be overwhelming. Remember that the “normal” ranges might not apply to your child. For example, oxygen levels in babies with CHD can be in the 70s or 80s, which is expected. The brain tends to be the last organ affected by low oxygen, so don’t overly worry about potential brain damage. - Visitor Restrictions Will Apply
Most intensive care units limit visitor access to immediate family only, especially during flu season. If you have siblings at home, consider sharing photos and videos of the baby to help them feel connected. - Many CHDs Are Correctable
As surgery approaches, engage in deep breathing and mindfulness techniques. Accept help with meals and household tasks. Keep in mind that countless children recover and thrive after heart surgery.
Today, Lily is seven years old, and I often forget the severity of her condition at birth. Though those early days seemed like a lifetime ago, healing—both emotional and physical—does occur.
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Summary
Having a newborn with a congenital heart defect can be overwhelming and emotional. Understanding the challenges of holding, feeding, and caring for your baby, while preparing for surgeries and managing hospital protocols, is crucial. This journey may be fraught with uncertainty, but many children recover successfully and lead thriving lives.