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other O Warrior families

My name is Russ, and I am the father of an Omphalocele baby. In early 2014, I took my sweetheart and two children to learn the gender of our third child. As we sat in the cozy ultra sound room, the kids were active, the OB/GYN was doing his process… and then… as he looked at the monitor, his facial expression changed and we heard the phrase that would change our lives - for the better! “This baby has an Omphalocele - you’ll need to see a specialist!”

Yes, those days were stressful, uncertain and packed with many questions. Easier to say now, than it was then, but our mentality was “come what may!” And… a blink later, today she is a healthy 7 year old, who loves to dance and play dolls with her friends, enjoys going swimming and wants to start her own YouTube channel. She’ll be entering 2nd grade next year where many know of her story, but those who don’t would have no idea what she experienced at birth. I don’t tell her story near as much as I did shortly after she was born, but I love talking about her journey with others so as to bring awareness, and also hope to those in a similar situation. I am so proud to be an Omphalocele Dad, and so proud of my little Ella!

I wish I knew a year ago what I know now…. My Darling Grandson, Shepherd, has just turned one. I would like to share Shep’s journey to this world through my eyes. I had always wanted to be an Oma ( Grandma in German). I was overjoyed when I heard the wonderful news that my daughter was expecting! Shep is my first, and a boy – Oh my how can it get better than this?!

Four months before he was born, I received an alarming phone call. My son in law called me to tell me they just had an ultrasound, and the baby had a large Omphalocele. A What?! My daughter was so stunned she did not even get on the phone. I immediately went down the dreaded Google rabbit hole. All I saw were terms and possible outcomes that were so depressing. It took me 2 months to even learn how to pronounce Omphalocele.

If you are a new mother who just heard this diagnosis, please do not get discouraged!! There is a wonderful O support system. There are so many that are willing to guide you and share their stories. Shep was in the hospital for a few weeks, but once he came home, he has been thriving. We are doing the paint and wait approach, and do not expect closure surgery for another year. But this does not slow down my Prince! He is crawling and exploring like any typical one year old. He loves his swim lessons. He is pure sunlight and joy and the light of my life.

Please enjoy your pregnancy and the miracle growing inside you. Do not let a scary word take away the joy of this special time. These babies truly are Warriors!

I am a first time grandmother of a grandson who was born with an omphalocele. I was asked what is it like?

Well in the beginning it was very scary. I had never heard of one. I started looking for information and searched the internet about it.

As her due date got closer we were excited and nervous. Then the big day came and I was able to be in the operating room when my daughter had her c-section. The room was full of doctors and nurses, ready to attend to my grandson. I kept trusting God that all would be ok. The minute they got him out he cried, and when I heard that the relief and happiness I felt is unexplainable. I knew he was going to be ok. When the doctor lifted him up for my daughter and husband to see, he was screaming.

I remember seeing his omphalocele which looked like a big jiggly balloon and thought wow, our miracle grandson! They worked on him right there in the room, and soon I was able to walk over to see him in the incubator before they took him to the NICU. He was able to breathe on is own and that was such a relief.

I wasn’t able to hold him for 19 days, and I was a little nervous, but my daughter reassured me I wouldn’t hurt him and when I did he just melted my heart, he was our precious little miracle.

I was there when he came home and spent a couple weeks, which was wonderful. Watching his parents change the dressing every day and tending to his feeding pump was amazing. I had never experienced any of that.

Those first months was so fun watching him grow and so exciting when he would smile and coo. Then it was time for his closure surgery at about 6 months. That was a stressful time again, but he came through with flying colors. It was great to hold him belly to belly after he had healed.

Watching him grow has been so wonderful. He is the most precious, happy, smiling all the time little guy. You would never know the challenges he had his first year.

I was fortunate that my daughter kept well educated and informed of all the medical aspects of this rare defect and kept me updated. I couldn’t be prouder of my daughter and her husband, and of course my precious WARRIOR grandson!