Presley’s Story

O Warrior Stories

Written by: Taylor Lang

Hello! This is Presley Lu born on April 20, 2025! After battling infertility and aggressive Endometriosis, my husband and I were surprised when we finally got a positive test. So surprised that I took not one, not two, but 11 tests to confirm! As eager first time parents, my husband and I found a local ultrasound place that did early gender scans because we could not wait to find out what our little one was. At 13 weeks we went with excitement, but that excitement quickly turned to fear when we left and received a call from our OBGYN. She said the ultrasound place we went to called and they believe they found an abnormality with the babies stomach. We had to wait almost a week before seeing our OB, but at 14 weeks we found out our little girl had a giant Omphalocele. So many things were running through our heads but we were determined not to google anything and only get information from doctors…  The following week we were referred to Ohio State Maternal Fetal Medicine where they confirmed our baby had a giant Omphalocele containing all of the liver and some of the stomach. They were encouraging and shared that our little one could still live a happy and healthy life as she had no other conditions or abnormalities presenting.

From week 15-19, we were THRILLED! We went into total girl mode buying everything we could in pink! On December 31st, we went to a routine growth scan where our world was completely rocked. A doctor that we have not seen before came in and said he thought we should terminate our pregnancy because he believed her condition was lethal. He thought almost all organs were outside of the body causing restricted movement and he said she did not have a chest wall. I said “it’s not that I don’t believe you, but is there somewhere we can go for a second opinion.” He then went on to tell us this is the worst he has seen in his career, talked about the logistics of pregnancy termination, and gave us paperwork before telling us he would send over a referral to Nationwide Children’s for a second opinion. The two hour drive home from that appointment felt like ten hours… Every kick I felt during that drive made me cry… I couldn’t understand how someone was telling me that my baby, with a heart beat of 156 and that was constantly kicking me had restricted movement and needed to be terminated. 

We have spent the next week trying to remain hopeful and praying with our closest friends and family, but we also were trying to prepare for the worst as this doctor was so certain on his findings. About a week later, we had multiple scans done at Nationwide Children’s Hospital in Columbus, Ohio. We met with a care team of 8 who all disagreed with the doctor at our previous appointment. They said she still has the giant Omphalocele and we will have journey in the NICU after delivery, but her care could certainly be managed and they wouldn’t recommend us terminating our pregnancy. They actually told us that their hope is we would make it full term! I was so excited to hear the news that I invited our doctor to my family Christmas (not even joking)! 

After that I thought pregnancy would be smooth sailing, but our girl thought we needed some “excitement”… Having a baby with an Omphalocele our doctors were very cautious with her care. We were frequently sent to Labor and Delivery for irregular heartbeats or decreased fetal movements during appointments. From week 29-33, we were in the hospital if not weekly, twice a week. We still tried to remain hopeful and after every positive appointment, we shopped for our girl!!! During the stressful times of a high risk pregnancy, that’s the best thing we could have done for ourselves. We also tried to educate ourselves on what life would look like, set up counseling for ourselves, and requested a tour of the NICU she would be in. On Tuesday April 15th Presley’s heart rate was abnormally low so we were sent to Labor and Delivery, but once we got there and got cozy they decided she was perfect and they sent us home. On Friday, April 18th we were scheduled to meet with our team at Nationwide one more time before her scheduled c-section on May 13th, but my blood pressure spiked and I was feeling sick so we were again sent to Labor and Delivery. After evaluation, our team decided baby Presley wasn’t in any danger so they sent us home! Early Easter morning, I thought I was having Braxton hicks but was instructed to go to Labor and Delivery at my local hospital to confirm. That was not the case… I was in active labor and the hospital I was at was not equipped to deliver our little one so I was quickly Life Lighted to Ohio State Wexner Medical Center where Presley Lu Lang was delivered on April 20th at 33 weeks! At 3 pounds and lung development in the 56th percentile, we were nervous for our O baby but she quickly started showing how strong she truly is! 

We decided to go with the Chip Clip method to compress her Omphalocele and after 127 NICU fight at Nationwide Children’s Hospital in Columbus, Ohio, we were able to take our girl home! While we were in the hospital, I met another O mom and saying goodbye to her was so bittersweet, but she cheered us on the entire way home! On April 24th, 2026 Presley underwent closure surgery and now is a happy and healthy 14-month-old working on catching up her tummy muscles! We are still struggling with feeding difficulties, she remains fed through an NG tube, but she doesn’t let that stop her from enjoying some chocolate ice cream and sweets!

When we got the O diagnosis I joined what I thought was going to be a silly support group on Facebook. In my head I thought “what support group is named MOO, this is goofy” but the amount of support, inspiration, advice, and resources I have received is truly unmatched!This journey has been incredibly difficult, emotionally, physically, and financially but we are so thankful for the support we have received from the O community. We are also grateful for all of the people we have met on this journey that have inspired us to keep going and we hope we can inspire people too! 

We hope you always advocate for your little one and keep fighting forward!