Updated: Mar 10
It sounds like a death sentence. You don’t hear words like “your baby has a hole in his abdomen and his intestines are outside of his body” and just shrug it off. It doesn’t sound like something that can be fixed.
But shockingly, it can, and with astonishingly successful results. Our youngest son is proof of that. Bastian is about to have his first birthday, and it feels like the right time to tell the details of our story. We want to celebrate how far he's come- and just as importantly, we want to be a beacon for anyone else going through this terrifying experience.
I know what it's like to be hit with such devastating news, how it feels like your soul has been siphoned out of you and replaced with heavy, wet cement. But I also know what it's like to survive it. I know what it's like to hold a tiny little warrior in my arms, and let me tell you, it's worth all the torment that led up to it.
At the end of my first trimester, Chase and I scheduled an elective ultrasound to learn the baby’s gender. We both laughed about finding out we were having a third boy, and we teared up seeing him on the screen, thinking it was one of the few times we’d get to glimpse his face before he was born. We had no idea we were dealing with a high-risk pregnancy that would lead to weekly ultrasound scans.
There was a moment when Chase asked the ultrasound tech about a "grayish cloud" on the screen, just behind the baby’s abdomen, but I didn’t pay much attention. I thought it was a little funny, actually. I’d seen way more sonograms than he had, so in my mind, he just wasn’t used to their fuzzy nature. I was too busy thinking of baby boy names and wondering where we should eat lunch.
(You can see clearly the gastroschisis in this ultrasound pic - I can't believe I didn't notice a problem that day.)
The ultrasound tech - a super bubbly, nice lady- congratulated us, printed out some pics, and sent us on our way. We ended up at a hibachi restaurant, and over plates of fried rice and grilled shrimp, we decided on the name Sebastian Starr. I’d always loved the name Sebastian, and I was fond of the character Bastian from The Neverending Story. Chase chose Starr, inspired by the directions to Neverland in Peter Pan - “second star to the right and straight on 'til morning.“
We were brimming over with excitement and happiness, having no idea how much things would change overnight.The next morning, a Friday, I had a voicemail from my OB office saying I needed to confirm I could make it in for a followup ultrasound appointment on Monday. At first I was confused, then I went into a full-blown panic.
I wasn’t due for another ultrasound for a few months- that’s why we’d decided to pay for an elective one to find out the gender. So why was my OB office suddenly eager to do one? And they hadn’t called to say I should schedule a followup- they’d already put me on the schedule for the very next business day.
I ran to Chase, blubbering about how I knew something was wrong. Much earlier in the pregnancy, I'd had some bleeding and been told I was miscarrying, so it wasn't easy for him to calm me down. I called the doctor’s office back and confirmed I could make it to Monday’s appointment, but no one would tell me the specifics as to WHY it was necessary for me to be seen.
“The ultrasound technician you saw yesterday sent over your scan, and we just want to see you for a followup,” the receptionist and a nurse both insisted. "It doesn't mean anything is wrong."
I called the ultrasound tech we'd seen the day before. “Is it standard to automatically send the scans to a patient's OB office, or do you only do that if there’s a problem?” I asked her.
She was really quiet for a minute, and what scared me most was when I realized that I didn’t even have to tell her who I was. Even though she’d had a full schedule the day we were there, she knew who I was when I called.
“Legally, I’m very limited on what I can tell you,” she told me, “but no, I don’t automatically contact doctors- I only send the scans if I spot a potential problem. I'm so sorry I can't tell you more.”
I called the OB office again. And again. And again.
I just wanted someone to tell me what the potential problem was. Finally, around 6 o’clock that evening- after business hours, when I’d given up finding out anything- the midwife I usually see called me to tell me there was something concerning on the baby’s abdomen, but it was "probably nothing."
“I knew there was something weird about that gray cloud,” Chase mumbled, but we still had no idea what we were dealing with. It was a painfully long weekend of waiting.
Monday finally arrived. There were no jokes between us in the lobby, no overflowing excitement as we made our way to the ultrasound room this time. It was like walking into a morgue, silent and eerie.
I lay back on the table in my medical gown, tears already streaming down my face. I wasn't even sure if there would be a heartbeat at this point. I had been desperate for this moment to get here and now I was too afraid to look.
Instead of making typical small talk, the tech silently passed me a handful of tissues and gave me a soft smile without meeting my eyes. If I wasn’t worried before, I was then. I cried harder. Chase was staring hard at the ultrasound images and then turning to Google on his phone, as if he could figure out the diagnosis. I could barely look at the screen.
The tech patted me on the shoulder and told me she was going to talk to the doctor, that I could go ahead and get dressed while she was gone.
“I think those are the baby's intestines,” Chase blurted out the moment she was out the door. "I think his intestines are on the outside of his body."
A rogue sob escaped me. His words felt like a sledgehammer to my chest, cracking my ribs wide open. I watched my heart fall out of my body and flop around like a dying fish.
I remember being upset with Chase for telling me this while I was in the middle of trying to put my pants on. I needed time to mentally prepare. I needed to be wearing clothes. I needed for all of this to be a bad dream.
(You can see the intestines a little more clearly in this image.)
“But if that’s the case, it’s a good thing!” Chase quickly added. I looked at him with a mixture of shock and annoyance. “If that’s what’s wrong, they can fix it! There’s like a 98% survival rate.”
And, as you already know, he was right. The rest of that appointment is a bit of a blur. We were given the official diagnosis and told we’d have to see a specialist during my pregnancy and after he was born. I was overwhelmed with trying to process all the information and all the feelings, so I have to take this moment to say how grateful I am for Chase. If he had not done a little research on his phone and been able to offer me some reassurance, I don’t know how I would have been able to survive that day, and here's why:
The nurse practitioner was not at all familiar with gastroschisis and could answer exactly none of my questions. I remember asking, “But the baby, he’s going to be okay, right?” and she gave me a look full of obvious doubt.
“There’s a really high survival rate, right?" Chase added.
She practically shrugged. “I don’t know. I don't want to get your hopes up.”
Geez, lady. I appreciate you being honest and not trying to give us false hope, but how about working on your bedside manner? How about doing a little research on your own or bringing in someone more educated on the subject? Maybe she was just uncomfortable with the whole situation and her lack of experience with the diagnosis, but I swear she almost acted like we were an inconvenience to her. Like I purposely was growing a child whose insides were on the outside just to ruin her day.
Maybe that’s not a fair assessment on my part. After all, my emotions were heightened and I was not exactly thinking clearly. But still, that memory and my interpretation of those moments, is a huge reason I’m choosing to write about gastroschisis. If there is anyone out there dealing with the diagnosis, we want to be a source of comfort and of hope.
Those first days were terrifying and difficult and strenuous. I wish I could pretend I stayed in good spirits, that I was positive and upbeat from the beginning, but that's just not true. I was emotionally volatile and practically paralyzed with grief. My eyes stayed swollen, I barely got out of the bed. It was brutal.
But I knew our journey was just beginning. Somehow I had to get past the fear, be strong for my baby. He was fighting for his life, and I had to do the same. Chase repeatedly reminded me that the best thing I could do for everyone was eat, get rest, stay busy - and laugh. I had to give myself permission to laugh, because my stress was only making everything worse. My baby boy needed good vibes, not negative energy.
And now, that same child I was terrified of losing is alive and well and feisty and playful and literally slapping my computer and laughing as I type this. So trust me, you've got plenty of reason to be hopeful.
Special note to the parents dealing with a gastroschisis diagnosis and all of the unknowns that come with it:
There are no guarantees, of course, BUT the odds are in your favor. It's going to be okay.
Read my next post to hear from other mothers who were pregnant with gastro warriors - there are so so so so many positive outcomes, and that's what we want you to stay focused on!