HOW A BIRTH DEFECT CHANGED MY OUTLOOK

Everytime I look at Teddy’s adorable perfect little belly button I get reminded of how lucky we are. When I was pregnant with Teddy we were told by doctors that he might not have a belly button, he might not have a life at all.

“Oh my god, there are two lines!” I said, my heart dropping into my stomach.

“You have to wait the full 5 minutes… wait until the timer goes off!” My husband said nervously. 

We were crowded in our bathroom staring at a little stick that I had, minutes ago, just peed on. The timer finally went off after what seemed like forever and it was official…

 

I was pregnant. 

 

Wow. I don’t remember if I laughed or cried. I don’t remember what I was thinking or what we said but we both knew that our lives were soon about to change.

 

I was happy and excited but overcome with anxiety. My anxiety was made worse when the doctor said that they wouldn’t see me for my first appointment until I was 8 weeks along….they weren’t even going to give me a blood test to confirm that I was actually pregnant.

 

Waiting until week 8 felt like a lifetime. So much could happen before then and I had so many unanswered questions. I googled everything. The good, the bad, the ugly. I needed to know everything so I’d feel prepared just in case.

 

4 weeks of googling, barfing, googling and barfing later and I finally got to see a doctor. Yay! Finally time for a little piece of mind. 

 

The doctor confirmed I’m pregnant but how was I supposed to know everything was okay? They didn’t listen for a heartbeat, they didn’t do an ultrasound. My husband wanted to share our news with our families, but I wasn’t ready. What if something was wrong? What if there wasn’t even a baby in there and it was just one of those blighted ovum things that I googled where you just have an empty egg sac in there with no baby??

 

At 10 weeks we fiiinally got an ultrasound and we got to see our baby and hear its little heartbeat. The doctor said everything looked great and I was so relieved. I was finally ready to share our good news with our families. We invited our parents to our house that weekend.

 

I was sitting on the couch staring at the adorable little sea monkey in the ultrasound picture and thinking about what it might look like one day, looking for any hint whether it would be a boy or a girl. Then the phone rang. It was the doctor’s office. 

 

“Hi, I’m calling to let you know that we missed something in your recent ultrasound. After looking more closely at the ultrasound we noticed your baby’s intestines are forming outside of the body.”

 

Sorry, what? 

 

My heart sank.

 

My brain raced with a million awful thoughts. I thought I might throw up. I couldn’t speak. 

 

“It’s a rare birth defect called Gastroschisisis. We’d like you to come in for a follow up appointment ultrasound with a specialist,” the doctor said. 

 

I couldn’t process what was happening. I asked if there was a chance they were wrong? Was it something that can fix itself? I was assured there was no mistake and it was not a problem that could resolve on its own. 

 

So that’s it? Will my baby even be able to survive with its intestines spilling out of its belly? 

 

“Will I be able to carry the baby to term?” I asked, afraid to hear the answer. 

 

“Many women choose to go through with their pregnancies,” she said.

 

I don’t even remember how the rest of the conversation went. I got off the phone and immediately began to cry. I had zero idea what any of this news meant. Would my baby have a normal life if it had any life at all?

 

I called my husband at work and I don’t know if he could even understand what I was saying through the tears, but he rushed home and together we turned again to google.

 

We read every article about Gastroschisis. We looked at pictures. We learned that Gastroschisis is when a baby has an opening in their abdominal wall next to the umbilical cord that allows the intestines to form outside of the body. We learned that the defect can be corrected with surgery immediately after birth leaving babies with large scars and no belly button. We watched videos of tiny little babies (tiny because most moms had to deliver weeks early to limit the intestine’s exposure to the acidic amniotic fluid) with their guts suspended above them in a plastic bag. We learned that sometimes the baby’s stomach, ovaries and other organs can also migrate outside of the body through the opening in the abdomen. Gastroschisis babies can die in the womb or die from bowel obstructions after birth.

 

It was most common in teen moms and drug users. So why was it happening to me??

 

One of the hardest parts was knowing that I wouldn’t get to hold my baby when he was born.

 

I cried for days.  

 

They were wonderful and supportive. They were happy for us even though they were just as sad and worried as we were. My sister-in-law is a neonatal nurse and she assured us that our baby would be in good hands. We live close to one of the best children’s hospitals in the world.We went out to celebrate the happy news and to try to forget about the sad news. 

 

It felt like we had began to make peace with the diagnosis. It was time for our follow up at the high risk ultrasound place, and we waited to hear how severe the Gastroschisis was. We hoped they would only find a small loop of bowel outside the body.

 

The ultrasound tech showed us the head, the arms, the fingers, the toes…we were like get to the point lady… How bad is it!?

 

“I know why you are here,” she said, “but I don’t understand, because I see no signs of Gastroschisis.”

 

I have never felt more relief in my entire life. We both cried tears of happiness and disbelief as she continued to explain that she thought 10 weeks was too early for them to have diagnosed that in the first place and the doctor came in and confirmed. He said we’d continue to follow up and make sure, but he didn’t think we had anything to worry about.

 

The rest of my pregnancy was almost anxiety-free, none of the little stuff mattered anymore. It didn’t matter what he looked like, if he was right handed or left-handed, if he was going to be a boy or a girl…

 

He was healthy and that was more than I could ask for.

 

All of the googling and worrying in the world couldn’t prepare us for what happened and it wouldn’t prepare us for anything that could go wrong in the future.

 

 What was going to happen was going to happen and I wasn’t going to let the worry ruin this happy time.

 

Everytime I look at that little belly button and that happy smiling face I am reminded how fortunate we were. Our nightmare turned out to be a false alarm, but I also think about the many families that were not so lucky.