Chances are this is not the first blog you’re reading about Short Bowel Syndrome. And if you’re anything like myself or my wife, Google has been both your best friend and worst enemy lately. So I’m hoping that our story can help you navigate what can be a scary time, or at least let you know that you’re not alone.
To be honest, we were stressed well before our child’s diagnosis with Short Bowel Syndrome. Planned or not, finding out you are pregnant comes with a lot of questions. Conception? Fertilization of an egg? How much to budget for diapers? I’m anxious just thinking back on it.
None of it seems to make sense. You are having a baby (or in our case, two) and the reality is, life has changed forever. It’s no longer about you, your partner or the silence that you once called peace (and probably took for granted). It is about the next chapter of your life packed with fear, anxiety, expenses, a mess and truly the most overwhelming feeling of love in the world.
A Challenging Pregnancy
For a lot of parents, a healthy pregnancy is all they know. Friends and family have long boasted about those precious 9 months, the cute photos and their bundle of joy at the end of the rainbow. For us, a healthy pregnancy is the only thing we wished for day-in and day-out, praying between appointments and talking ourselves back to sleep as we awaited the next scan or test results.
The hope of that joyful 9-month pregnancy disappeared for us at the 20-week mark. After learning we had monochorionic, diamniotic twins (MCDA or Mono Di) with abnormal placental sharing, we monitored abnormal dopplers every two days. And we prayed ourselves from one milestone to the next. 22 weeks, 23, 24 and so on, we counted our blessings all the way to almost 34 weeks.
To parents in our shoes, giving birth only 6 weeks early is a miracle. To other parents? Well, it’s hard to wrap their heads around the idea of prematurity and the ability for a baby to thrive that early. My wife and I, however, look back on those NICU days and wish that was our only concern.
If you are currently navigating a similar situation and are unsure of what to expect, take a deep breath. There are so many stories out there about babies born as early as 24 weeks who are healthy and thriving.
An Early Arrival and New Diagnosis
Two miracles. Buy one, get one. Whatever you want to call it. While the day arrived early, it brought with it our two amazing boys. We were in shock. And although the experience was not what we’d always imagined having been at the height of the COVID-19 pandemic, it’s a day we will never forget. The boys were taken to the NICU and the road to get them home began.
We were relieved that our boys made it this far and really had no concerns about the NICU. We tried our best to focus on the day they would come through those apartment doors.
For one of our boys, that day arrived within a week. For our other, we turned to Google.
What is Necrotizing Enterocolitis?
Can you survive Necrotizing Enterocolitis?
What is a bowel resection?
Who are the top experts in Necrotizing Enterocolitis?
Necrotizing Enterocolitis cure?
Does the NICU cover parking passes?
Yes, we sunk that low.
It did not take long for our world to be turned upside down and inside out. I wasn’t sure that Google had answers for all of our questions (let alone our medical team).
And just like that, 10 days into his life our son had 4 major surgeries, a 30% chance of survival and less than 10% of his small intestine intact. Within days this kid had experienced more trauma than most do in their lifetimes.
All the while my wife and I were helpless spectators on the sidelines praying for more miracles.
*What I’ve learned? Regardless of what you are going through, where you are in the process or what other peripheral challenges you may be facing, inside us is the ability to tackle ANYTHING for our children.
Understanding Short Bowel Syndrome and Today’s Treatment Plans
Simply put, it is exactly what it sounds like — 0 creativity points for the Doctor on the other side of that name. For whatever reason with Short Bowel Syndrome, your bowel (or intestine) is shorter than it should be. A shorter bowel means less absorption of nutrients. From there, it’s the elementary science you remember.
Not enough calcium? Weak bones.
Not enough fats? Poor weight gain.
And so on…
Our bodies need essential nutrients to survive and without the intestine required to absorb them, patients need to rely on other sources.
Today, there are a handful of care plans available to most pediatric Short Bowel Syndrome patients.
Here are a few solutions that may be available to you as next steps for your child’s diagnosis:
Imagine if someone cut the middle section out of a rope. The top and bottom half are no longer connected. The top half of that rope is your small intestine (connected to your stomach) and the bottom half would be the large intestine (leading to your anus). An ostomy is simply the re-routing of that top half to the abdominal wall (or stomach).
This option can mean a couple of things. First and foremost, it is likely temporary and designed to enable rest, growth and adaptation of the remaining bowel. For others, temporary may not be the case, but it is there to aid life sustaining functions. Whether your annus or a hole in your stomach, everyone poops.
Gastrostomy Tube (or G-Tube)
Nutrition is essential for growth. The G-tube allows enteral feeding and is inserted through the belly to bring nutrition directly to the stomach. The other advantage of enteral feeding is intestinal growth and adaptation. Like every other muscle in our body, the more you exercise it, the more it grows. Consistent exposure to food and nutrients allows the intestine to grow with constant expansion and contraction.
Above and beyond the miracles of growth, the body is smart enough to act on behalf of the missing pieces. While it may never function or absorb as though the entire intestine were in place, it learns to pick up the slack.
This for us (and most parents) was the hardest to digest at first. The central line is an IV access that remains open to your child. Again, without the intestine in place to absorb the necessary fluids, nutrients, vitamins, etc. a central line allows you to care for your child with supplemental nutrition, medications, fluids, fats, etc. These lines are not permanent and can be removed if your child is able to absorb adequately with time.
Whatever treatment plan works best for your family, I get it, they are a pain. There is a lot of stress and anxiety that goes along with it and it’s likely one of the most inconvenient things you’ll ever experience. But they are solutions that can help keep your child alive.
Our boys have taught me that Short Bowel Syndrome is our reality, and it is not a death sentence. Short Bowel Syndrome may come piled high with anxiety, filled with stress, masked in expenses and covered in poop, but it is a blessing. Your child is a blessing.
Know you are not alone in this journey. Have a story you would like to share with our community and parents alike? Share your story here and help our community of parents, caregivers and providers relate to the real journey of SBS.
Stay strong, keep focused and remember, it’s only poop.
Father of Jack (A Short Bowel Syndrome Patient)