Crew’s story
Written by: Lindsay Cluff
Crew was supposed to be my easy kid! He was my last baby and I had waited about 4 years from my last kid to have him. My pregnancies are tough, and Crew was already kicking my butt. When Parker and I went in for our 20-week ultrasound, we were devastated to hear that our baby had a major birth defect. They gave us a brief description of a giant omphalocele along with their statistics of a 40% chance of survival based on what they saw in the ultrasound. As we stared at the grim, sad looks on our medical team’s faces, our hearts dropped. I just kept thinking “Is this real life right now? They must be wrong.” Then they asked if we wanted to terminate. “Did I just hear him right?” I thought to myself. He asked us again, and I just looked at Parker with horror and tears. Parker respected that it was my body and that I was struggling through the pregnancy already. He looked back at me with the same devastated eyes that I was probably looking at him with and I just knew. There was no way I could terminate my little guy. I was his mom. I had no idea what this meant for any of us, but I knew that I was his mom and it was my job to protect him the very best that I could and leave the rest in God’s hands.
We went home and began our research, looking for other stories like ours. We began connecting with people through Instagram and Facebook and made appointments with the specialty team at Primary Children’s Hospital Fetal Center. We announced our news on social media, and we had an outpouring of support and met some amazing omphalocele families. With each story our hearts lightened. When we met with the fetal team at Primary Children’s Hospital we were able to get more details about our little Crew and his giant omphalocele. The fetal team reassured us that they were very experienced and that after getting another look at him in an ultrasound that day, that his survival rate was more like 80%. They had some concerns about his heart and how high his Omphalocele was on his stomach (indicating possible Beckwith-Wiedemann syndrome), but we left feeling hopeful.
The rest of the pregnancy was full of appointments, non-stress tests and planning. I tried to just enjoy the pregnancy and revel in all the movements Crew was making. I felt his little spirit with me, and I knew he was a fighter.
On the morning of February 8th, 2021, I went in for my scheduled c-section. Crew was 38 weeks and 6 days. Our anxiety was high and so was our excitement to meet our little guy. When they pulled him out, they cradled his little body careful to support his O. He began to cry almost immediately, and everyone breathed a giant sigh of relief. I couldn’t see him before they whisked him away for medical attention, but Parker was able to get pictures for me. A couple of hours later they rolled his little incubator by my room for me to see him for a couple of minutes before transferring him to the NICU. All I saw was his tiny hands flailing around as he cried, it broke my little mama heart that I couldn’t comfort him. Parker walked with the Life Flight team over to the NICU and I waited in my hospital room. Finally, at almost midnight my body was awake enough to get in the wheelchair and go up to meet Crew. I will never forget that beautiful moment. I was scared and unsure, but he was here and I was so happy to finally hold his tiny hands while he laid in his radiant warmer bed.
Crew stayed in the NICU for 21 days. He had his ups and downs but he fought every step of the way. We surprised everyone when we brought him home in his massive Jefferson car seat on Sunday, February 28th. It was very overwhelming. We had all sorts of medical people coming and going from our home, as well as family and friends that wanted to meet Crew. They delivered loads of medical supplies and oxygen to our home and when I look back it all feels like a blur of long days and nights of exhaustion from all the regular new baby things, plus all the added medical stuff. We had opted for the “paint and wait” method after consulting with our medical team and other O families. Each day we would change Crews dressing and wrap him up in coban. Bodies are amazing and Crews body is no exception. His O shrank as his stomach, intestines, gallbladder, and liver all started to settle back into his body. The PDA in his heart had repaired itself and we were given all clear by the cardiologist at his 9-week appt.
Crew with Dr. Fenton at Primary Children’s Hospital.
By October 25, 2021, at 8 months old, Crew was ready for his closure. It was so hard to hand our little guy over to the anesthesiologist the morning of his surgery! We hoped and prayed that everything with his surgery would go well. When we got the call that Crew was out of surgery and headed to recovery we were thrilled! We met with Dr. Fenton, his pediatric surgeon, to go over the details of Crews surgery, including looking at pictures taken during the surgery and of how good plastic surgery had done with creating a belly button. We also learned that Crew had a congenital diaphragmatic hernia (CDH), specifically a Morgagni hernia, and that Dr. Fenton was able to close it up while he was in there. Shortly after, we were able to go be with Crew in his room as we waited for him to wake up. He was hurting, hungry, scared, and frustrated. He was tangled in IV’s and monitor leads. It took us the rest of the day and night to get on top of his pain.
The first 24 hours were brutal as we tried to find comfortable positions and keep him from throwing up. He faded in and out of sleep, screaming each time he woke up. He was exhausted and we were exhausted. Each day got better, though, and they felt like he was ready to go home on day 3 – ahead of expectations. On day 2 Crew had wowed the medical staff with his smiles and downward dog yoga positions. He was stressing us out and we thought he was going to ruin his surgery, but the surgeons reassured us that he couldn’t ruin his surgery. Let’s just say we were all so grateful to be home by the evening of that third day! Other than a small incision infection and some antibiotics Crew rarely acted like he had just had a major surgery. After this surgery, he catapulted from being behind on his developmental milestones to caught up to where he should be. A couple of months later he went in and had his two inguinal hernias repaired, and a circumcision. Surprisingly, the circumcision was harder and more stressful recovery than the O closure.
Crew is a warrior. His bravery and willingness to fight inspires us and so many of our friends and family. He has worked hard in PT, OT, and speech therapy to get caught back up with other 11-month-olds, and this past week he even decided it was time to start walking so that he could keep up with his older brother and sister. This has been quite the journey with so many ups and downs. I feel like I could write a short book, but I hope that all who are reading this will be able to relate and find hope on their journey.
You can make a difference in an O Warrior’s life. Donate today.