'I Didn't Know If My Son Would Live': Nikki DeLoach on Her Newborn's Risky Open-Heart Surgery

Former Awkward star Nikki DeLoach opens up to PEOPLE about her son Bennett's heart defects and surgery

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Published on November 6, 2017 03:53 PM

Nikki DeLoach BabyCredit: Courtesy Nikki DeLoach — Photo: Courtesy Nikki DeLoach

Nikki DeLoach was devastated to learn at five months pregnant that her unborn son, Bennett Christopher Goodell, had multiple heart defects and might not survive. Now the former Awkward star, 38, opens up to PEOPLE about her family’s emotional journey to bringing Bennett home:

I was so excited to go to the doctor.

I remember with my first pregnancy how at 5 months they’re able to use 3-D technology to let you almost see what your child’s face and hands and fingers look like. It was just amazing and I couldn’t wait to do it again. But as I lied there watching the technician do a fetal echocardiogram, I noticed she was spending a lot of time on one specific area. My husband [entertainment lawyer Ryan Goodell] saw my face and asked what was wrong. I asked the technician if everything was okay and she said, “You’ll have to wait for the doctor.” I instantly knew in my heart. I told my husband, “Something’s not right. Something’s not right … ” He said, “Don’t jump to conclusions,” but I just knew something was wrong.

Then the doctor came in and gave us the news that our baby had multiple heart defects. I was inconsolable. He had a ventricular septal defect (or VSD), which is a small hole in his heart, his aorta was narrow, his coronary artery would have to be moved, and he had a transposition of his great arteries, which meant the two arteries that go into his heart were going into the wrong chambers.

531171531CC00004_2015_InSty — Jason Merritt/Getty

Even thinking about it now makes me so emotional because you love your kid so much. I already knew what it was to love a child because I already had my son [William, now 4,] and all of a sudden we didn’t know if we were going to get to continue on with the pregnancy. I thought I knew what it was like to have my heart broken, but when you get news like that about your child you can literally feel your heart break into two pieces.

The next few months were incredibly difficult as they did test after test. The waiting for the results was awful. And then we’d be told, “The results weren’t clear. We need to do another test.” And then more waiting. For an entire month we were waiting to find out if our pregnancy was something that we would be able to continue with. I didn’t know if my son would live. It was paralyzing.

But there were two things that kept me going: my family and my faith. My son put a smile on my face every day no matter how upset I was and I had faith that everything was going to work out for the highest good of all. I truly believed that.

When you go through something like this, there is an instinct to not say anything and just hide out and isolate yourself. But I had gone through really serious, suicidal postpartum depression after the birth of my first son and I learned that isolating yourself is the last thing you need to do. You need to reach out to others and let them hold you up, let them be an anchor for you when you cant be an anchor for yourself. For me, my anchor became my husband. We have never been closer than after going through this together.

And reaching out to our community was so important. It was through a friend of mine that I was connected with Kelly Zajfen, she’s the woman behind the children’s clothing line Little Minis and her daughter had gone through heart surgery. I told Kelly our story and she instantly put us in contact with a whole team of people at Children’s Hospital Los Angeles and they immediately made me feel welcome and as though we would be in the best hands possible when the time came.

Bennett was born Sept. 20 — a birthday he shares with Papa, my late grandfather — and the very next day we were in the hospital headed to CHLA in hopes they could save his life. On Sept. 25 Bennet went in to surgery and cardiothoracic surgeon Vaughn Starnes did the impossible by successfully completing procedures that most kids do not survive.

But we weren’t out of the woods yet. For two weeks we stayed by Bennett’s side as he recovered from surgery. They had to leave his heart open for a few days so I could literally see my son’s heart beating outside his chest. They would have to blow him up like a marshmallow as part of the process of keeping him alive.

None of this was easy to watch, and four nights after the surgery I was in a particularly vulnerable state. I was trying not to fall apart but I had reached my breaking point and I couldn’t hold the tears back any longer. I’ve forever grateful to one of the night nurses who just held me as I sobbed. She looked at me and said, “It’s going to be okay. Look at me, I do this every day with these kids, he is going to be okay. I promise you.” It was such a critical turning point for me because (a) I believed her and (b) I just needed someone to hold me and tell me that. I couldn’t have gone through what I did without every single nurse that helped us. I’m still very emotional but I feel so blessed because not all families come out of a situation like this with such great results.

Bennet may have to have another heart surgery in the future, but for now he’s doing great and I’m so grateful because there has been a miracle bestowed on my whole family and I’ll never forget that.

People keep asking, “How are you?” And, honestly, I’m in that place where I am still trying to process everything that happened. We brought Bennett home and the first week was really tough because every time he breathed weird or felt warm or sneezed, I panicked. Had he been just a regular kid I would have said it was normal newborn behavior, but because of the heart defect and insane surgery I really struggled through all of that. I think that’s perfectly normal. I want mommies to know it’s perfectly normal to have PTSD after going through something like we did. I think I’ll be dealing with that for a while as I learn what it’s like to raise a kid who was born with special circumstances. I’m sure he’ll be saying, “Mom, leave me alone.” I’m gonna be that helicopter parent constantly, “Are you okay?”

But now — except for what we call his Brave Bennet Scar, the scar on his chest from the surgery — you would just think he’s a normal newborn doing all the normal newborn behavior. When he spits up on himself or on me or poops through his diaper or waking up every hour in the middle of the night, I’m actually excited. My nipples are going to fall off but I’m elated. He’s holding his head up, he’s smiling … people say that’s just gas but I don’t care, I tell myself he’s smiling at me.

I remain thankful that my family is lucky enough to be covered by great health insurance. Fetal echocardiograms cost a lot of money without insurance, and without one of those we never would have known that Bennett had a congenital heart defect. I had already been a huge advocate for making sure that we have affordable health care but now that fight has become extraordinarily personal. No one should ever have to make a choice about their child’s healthcare because of cost.

And that’s why CHLA is so amazing. I want to encourage people to give to institutions like CHLA, or any Children’s Hospital in your area. CHLA is a nonprofit institution that provides pediatric health care to thousands of kids each year. It provides millions in health care services, relying largely on the generosity of donations. NO KID is turned away. But even if you can’t donate, there are so many ways to give back whether it’s a toy drive or volunteering your time to read to the kids.

This experience, while certainly the most difficult and terrifying of my life, has been the most transformative and inspirational. I gave birth to the strongest, most mighty human I’ve ever known. He is a superhero. He is a marvel of God. He has renewed my faith, helping me to remember that anything is possible. He has taught me that I am stronger than I ever knew possible. I would never choose this experience, but it’s what life gave us. Our only option was to find the faith, courage, and love to move through it in the most graceful way possible allowing it to grow and change us in the process. I have been forever changed. My son’s life was saved. And I will forever be grateful.