What is Duodenal Atresia?

What is Duodenal Atresia?

It’s what turned this mama’s life totally upside down in a matter of one week.

Motherhood has always been at the very top of my goals list. Towards the beginning of May 2016 when I found out I was pregnant, I was ecstatic.

I feel like I had a fairly normal pregnancy. I lost a little weight in the first trimester due to morning sickness, but gained it back easily during the 2nd. We were asked a couple times if we wanted to do genetic testing. We opted out because we knew it wouldn’t make a difference for us. We found out we were having a boy in August and couldn’t wait to meet our little man. Everything seemed to be going so smoothly. There were some things in my future though, and Duodenal Atresia as well as Down Syndrome were just a few of those.

Just like any first time mama does, I imagined what welcoming our baby into the world would be like. In my mind it couldn’t have been more picture perfect. It was going to be magical, and I couldn’t wait.

At the end of November, that dream changed when I started leaking amniotic fluid at 30 weeks. I was told I was in labor and stayed the next 3 days at the hospital. During those days, we did several tests trying to figure out why. The only concern we had was that I had A TON of extra fluid. But we shrugged it off after being told “it happens all the time” and that there was no reason to worry. After those 3 days I was sent home on strict bedrest with medication to stop contractions.

I made it exactly one week before having to go back in on Thanksgiving Day. By the time I got hooked up to the monitor I was having intense contractions every 3 minutes. Lucky for me, I couldn’t feel them for some reason. They started hooking me up to an IV and started all the same meds from the week prior to try to stop labor. After the contractions had slowed down for a few hours they decided to check me and send me home. Unfortunately, I had progressed too much to leave. A few hours later Baylor joined us at 31 weeks gestation. He weighed 2 lbs 8 ounces and was 16 inches long. Within a matter of seconds he was passed through a window into the NICU, definitely not the picture perfect birth I had imagined.

A few hours later I was able to go meet my little boy. It was then that I learned about duodenal atresia. I had never heard of it before, but I was told it meant surgery and Baylor needing to be transferred to a bigger, more equipped hospital. I was also told that it’s very common in babies with Down Syndrome. Our neonatologist was 99% sure that Baylor had that also.

Hearing the words “Down Syndrome” honestly made me feel more at peace about our circumstances. Call me crazy, but for some reason I had always felt like I would have a child with special needs. I didn’t know very much about Down Syndrome, but I knew that God loves and protects these special beings.

Getting all this information at once was a little overwhelming. The idea of Down Syndrome never exactly scared me though. Duodenal Atresia and surgery did.

After being able to settle down a little it was explained again what Duodenal Atresia was. Duodenal Atresia or Duodenojejunal Atresia is the congenital absence or complete closure of a portion of the duodenum. It’s often caught on X-Ray by the presence of a double-bubble (you can see it on Baylor’s X-Ray above). It causes increased levels of amniotic fluid during pregnancy (because it can’t be fully digested by the unborn baby- that explains all the extra fluid I had) and intestinal obstruction in newborns.

Once Baylor was admitted to Primary Children’s we learned that they wouldn’t operate on him until he weighed at least 4.5 pounds. Part of me was relieved because that would mean he would be bigger and stronger for surgery, but I also knew that meant he would be in the NICU for a long time. He couldn’t eat or drink anything because his intestines weren’t connected. He would have to gain almost 2 pounds just on IV nutrition (TPN- Total Parenteral Nutrition). Our journey had just begun.

(Baylor’s lifeline, literally. The yellow bag is his TPN.)

Just before Christmas, Baylor was having a really hard time breathing. His airway was too small and was floppy due to having low muscle tone. He underwent a procedure (supraglottoplasty) that removed some tissue to widen his airway a little. From what I understand, this is also very common in children with Down Syndrome.

Did you know one paperclip weighs approximately one gram? We celebrated every paperclip gained ‘til December 28, then Baylor hit 4 pounds. Then we nagged the surgical team for weeks before we finally got a surgery date.

 (Getting some snuggles in before surgery and surgery support.)

 January 10th, 2017 Baylor had his repair (Duodenoduodenostomy). That day was SO long. Baylor was originally scheduled for 11:30, but it was a busy day in the NICU so he ended up being the surgeons last patient of the day. I was irritated with our nurse all day long because we kept getting skipped over. I hated knowing my baby was having surgery and not knowing exactly when he would be taken to the OR (mamas who exclusively pump will get this- timing is everything lol). We had family that had traveled 3 hours to be with us that day and we all just kept waiting around. Baylor was having a hard time breathing again and the stress level of the whole NICU was at 100%. Pretty much everything about that day was just long and stressful.

We walked Baylor down to the OR around 5 pm. After a couple hours Baylor was finally on the mend. We had finally made it over “the hump” and could start working towards going home.

“Okay mom, I can take it from here.”

Right after surgery.

Time really slowed down after surgery. Oxygen levels fluctuated, an infection, blood transfusion, a lumbar puncture, feeds being increased and decreased, etc.; it felt like it took days to make the tiniest progress.

Baylor started getting milk through his feeding tube 3 days after surgery. At this point the tube was going past his tummy and surgery site. It was hardly anything, but better than nothing. We were able to start breastfeeding on January 23rd, finally some milk in his little tummy. Baylor took his first bottle on February 1st!

Once we crossed off all the discharge requirements and got all the medical supplies for home lined up we finally broke Baylor out. February 15, 2016 was the best day. To say I was nervous would be an understatement. It’s one thing to take a baby home, it’s a completely different thing to take a baby with special medical needs home. I was ready to tackle those needs though; oxygen, monitor, feeding pump and all.

After 83 days at Primary Children’s Hospital we said goodbye to friends we’d made, our favorite nurses and doctors, and headed home.

The first few days seemed so hectic. Meeting with Baylor’s new doctor, home health, infant toddler program, etc. made it seem like our new life would be busy always. After we got settled things slowed down a little. Life with Baylor has been nothing short of an adventure. I wouldn’t trade all the extra doctors appointments for anything. This is my normal and I love it.