Reflections After My Baby's First Open-Heart Surgery

I handed my newborn baby, Nylah, over to her heart surgery team at Children’s Hospital Los Angeles seven days after she was born.

Seven.

During the first week of life, mommies are normally busy bonding with their new babies, concentrating on breastfeeding, cuddling them to no end. I didn’t get the chance to do any of those things. Two days after being born with the congenital heart disease (CHD), Tetralogy of Fallot (TOF), Nylah was airlifted from Orange County to CHLA for life-saving heart surgery. So I did what any mommy would do — I forced myself out of my hospital bed to prove to the nurses I could walk two days after my c-section. That way I could be discharged and go to my baby’s bedside in the cardiac intensive care unit.

We found out about Nylah’s heart defect when I was 20 weeks pregnant, so I had some time to do research and prepare myself emotionally for the medical battle she was born into. But the truth is, no amount of time would have ever fully prepared me for what comes along with her CHD/TOF diagnosis. Standing helplessly on the sidelines as Nylah went through her first open-heart surgery at just one-week-old, weighing a delicate 5-pounds, 11-ounces, devastated my heart a million times more than I ever anticipated it would.

From the outside, Nylah looks perfectly “normal” and “healthy,” or at least that’s what people say. The only indicator of what she has gone through is the faint scar that looks like a zipper running from right below her neck to the middle of her abdomen.

Through it all, Nylah was resilient and brave. If there was any positive, it was that her surgery taught me how to continuously trust the surgical team who would save her life, and how unbearable pain and guilt somehow transformed into strength during my weakest moments.

1. The aftermath of surgery is almost unbearable. 

I’ll never forget seeing Nylah for the first time after surgery. I was scared to death. Although I counted down the minutes while she was in surgery, I was terrified to see her. The ICU nurses explained to us her chest may be sewn together, or it might remain open and sewn together a few days post surgery. I remember saying “OK” and nodding my head, and quietly in my mind saying, “Dear God please let the surgeon be able to sew her back together because I don’t think I can handle the sight of her chest being open.”

After they told us surgery went well, the first question I asked was, “Were you able to close her chest?” The answer was yes. I remember exhaling in relief. But then I saw my baby with an IV needle in her neck, and IV needle in her ankle, an IV in her right wrist, wires protruding from her belly button, a catheter, breathing tubes in her nose… the list goes on. Her chest was sewn back together, but she was barely recognizable to me between the swelling and all the machines and wires that were helping keep her stable. We fought back the tears as much as we could when she would cry because we knew she was in pain; we were helpless. All we could do was sit by her incubator, hold her when we were allowed to, and talk to her so she knew we were always there.

2. Heart babies are bonafide miracles.

The doctors and nurses at CHLA told us on several occasions how incredible heart babies recover after surgery, but I didn’t believe it until I saw it with my own eyes. As an adult, I know I could never get through the type of surgery and recovery as gracefully as Nylah did. I could barely even muster the strength to look at her when she returned from the OR. But trust me when I say it was a true miracle to witness my tiny Nylah transform from the condition she was in after surgery, to the warrior she became over the 11 days she was hospitalized for recovery.

3. It wasn’t my fault.

Everyday I struggle with guilt for what my baby has gone through, and when I think about the unforeseen procedures and surgeries that are still in her future, the guilt gets harder to carry. I always question myself asking, what did I do? Why did this happen? Why Nylah? And while I already know the answer — it was a genetic abnormality — sometimes I still can’t get over feeling like it was in some way my fault. I am almost positive I will always feel guilty, but I remind myself what I feel is nothing in comparison to what Nylah has gone through.

4. CHD is a journey, not a surgery.

People often ask me if Nylah is “cured” since her first heart surgery is behind her. The short answer is, no. She is not cured. The longer answer is that Nylah, and all babies born with CHDs, can never be cured. CHDs are a lifelong disease. Nylah will fight against Tetralogy of Fallot her entire life. The journey is full of uncertainties because every case is different and unique to the child.

Nylah got through her first surgery, but we knew we would be taking her back to CHLA one day. Our hope was it would be when Nylah was 6-12 months old, but just a few weeks ago we learned unexpectedly her pulmonary valve has essentially stopped growing. So now her surgery will be a lot sooner. Today we are awaiting a meeting with her surgeon at CHLA, and there is a high probability that she will undergo another open-heart surgery within the next few weeks.

So now we are in the midst of the waiting game again. We spend the days looking at Nylah grow and watching her smile and coo and do all the things “typical” babies do. But in the back of my mind, fear, anxiety and sadness swirl around every second while I think about what she has to endure once again.

In the meantime, I will keep falling asleep and waking up every day with my hand on her heart making sure it’s still beating, feeling it pump beneath my fingertips, because at least in those moments I know for certain she is OK.

#prayforNylah

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