Lindy’s Story
O Warrior Stories
Written by: Britney Mollet
Waiting for that first ultrasound after I found out I was pregnant seemed like forever. I remember being so excited, and scared—anxious for that first look at our baby, and to hear that everything was looking “normal.” At my first ultrasound, everything appeared that way, except for what looked like a cyst on the umbilical cord… My OB assured us not to worry, but said that cysts can potentially be a sign of chromosomal abnormalities and she would recommend genetic screening just to rule anything out. Of course, I couldn’t help but worry. I remember being mad that this special day I was so waiting for, and looking forward to, had been experienced with anything other than that perfect “normal” I had so hoped for. It turns out the “cyst” wasn’t a cyst at all—and at 13 weeks pregnant, we were introduced to a completely new word: omphalocele.
That day was one of the worst days I can remember. Suddenly we were moved to a small room filled with doctors explaining to us what they had seen, and that it wouldn’t just “correct itself.” I remember one of the first questions I asked was for them to tell me the “worst-case scenario.” One doctor gave us a list of all the things that could go “wrong” with our little one, and I just listened in shock. Then – another doctor chimed in and said, “Now let’s talk about the best-case scenario” and told us about how great a prognosis our child could still have, especially if the omphalocele turned out to be isolated. I am forever grateful for that doctor who gave me those answers to such a hopeful question—a question that I never would have thought to ask myself.
We went through genetic testing—more waiting… waiting for that first ultrasound was nothing compared to this. My NIPT results came back inconclusive, so we decided to do a CVS (Chronic Villus Sampling of the placenta tissue), as we were just on the borderline of being able to do it. I was so relieved, because I felt like I couldn’t do any more waiting, and it was weeks before we would be far enough along for an amniocentesis. I know genetic testing is something that everyone feels differently about, but for me, I wanted to have as much information as possible.
Our CVS test results came back negative for chromosomal abnormalities, and we felt like we could breathe a little. Our little girl was measuring small since the beginning, and was diagnosed with IUGR (in utero growth restriction) so we had even more weekly scheduled ultrasound appointments. I remember panicking when I saw that she was measuring in the 1st percentile, but the doctor explained to us that much of this was because the measurements they take are not really compatible with babies with omphaloceles. We had multiple ECHOs done on her heart because it was tilted towards the O, but functionality was always looking good (She was also diagnosed with an ASD and PDA, two kinds of holes in the heart. These were actually not completely diagnosed until after she was born, and the PDA closed within a few months. We continue to monitor the ASD and hope it goes away on its own. ASDs are fairly common and often do close up; our pediatric cardiologist is not concerned.)
(This photo on the right is a cross-section of Lindy’s abdomen. The dark spot near the lower center is her stomach, located inside of her abdomen. Her omphalocele is on the left.)
Throughout my pregnancy, I really felt myself just “going through the motions”. I remember feeling so robbed of the joys I felt were supposed to come along with being pregnant for the first time. I felt like I always had to tell people our bad news along with our good news. I felt like I always had to be cautiously optimistic, on the days I felt optimistic at all.
But then Lindy was born. She arrived on August 23rd via scheduled C-Section – Giant O and all.
She was in my arms shortly after, for a few precious minutes, until they took her away. We had planned that my husband would go be with her in the NICU until I could make it, and he texted me photos until I could be with her again. It was about 4 hours later that we were able to all be together again.
Lindy was in the NICU for just over 2 weeks. (We had prepared for at least 3 months based on doctor’s best estimates.) During that time, the only thing she needed help with was eating and getting proper nourishment to gain weight. She had a PICC line for about a week, and an NG tube until she was eating and gaining enough weight on her own. It seemed to take her a little while to get accustomed to eating…we really don’t know if this was even related to the omphalocele, or not. We prepared for “paint and wait” and learned how to dress her O from the nurses. I remember the first time I watched a nurse do it, I never thought I would be able to do it myself….but we were experts in no time. We were shocked when they started talking about discharging her—we didn’t feel ready.
Well, she was ready—so we had to be! We learned to apply an antimicrobial cream to Lindy’s O once a day and then wrapped it in gauze. Eventually, when enough of it turned into a scab, we stopped wrapping it in order to let it dry out until the scab fell off. We watched in awe as the skin grew over her omphalocele—how amazing it is what these little bodies can do! Lindy was able to start going to daycare at 3 months old and had full skin coverage at about 7 months old.
In this photo, Lindy is doing tummy time with a pillow they made her in the NICU out of a wheelchair cushion. A hole was cut into it that perfectly fit her omphalocele.
Today, Lindy is a happy 2 year old: determined, curious, and full of joy. We feel incredibly fortunate for her. We weren’t prepared for how happy she would make us—especially when for so long we couldn’t help but only prepare for the worst. In hindsight, I wish I would have spent more time celebrating Lindy than worrying about her—but we have the rest of her life to celebrate her, and we plan to!
Lindy’s closure surgery was in September of 2022, when she was just over a year old, and she has not missed a beat.
As I write this, I realize that the word omphalocele isn’t as scary as it was that first day we heard it. It’s a part of her story, but it doesn’t define her. This girl’s story is only beginning!