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What is Total Parenteral Nutrition (TPN) - Eclipse Regenesis Blog Featured Image

What is Total Parenteral Nutrition (TPN)

For patients and parents recently affected by or managing short bowel syndrome, TPN is likely new to their vocabulary. While any clinical acronym may sound overwhelming, TPN is not such a complicated one to understand.

What is TPN?

Total Parenteral Nutrition (TPN) is a way to feed the body without the need for traditional digestion. Patients with short bowel syndrome (SBS) often struggle to absorb an adequate amount of nutrients from the foods that they consume orally. For some SBS patients, eating by mouth, in general, is a challenge and may require some additional feeding therapy. 

Without the intestines’ ability to absorb adequate nutrition, TPN allows for a patient’s body to receive the required nutrition intravenously (through the vein). When eating by mouth is not an option or does not provide enough calories and nutrients for the body to thrive, total parenteral nutrition is a clinical alternative and support mechanism for patients.

How does TPN Work?

TPN bypasses the gastrointestinal tract and delivers nutrients directly into the body via the bloodstream. Following a procedure or during initial rehabilitation periods, TPN can be administered to patients for a short term through a peripheral IV.

For patients who require TPN over a longer duration of their care treatment plan, a central venous catheter (Broviac® or peripherally inserted central catheter (PICC)) is typically placed by a nurse or physician. These catheters provide daily access to the bloodstream without the need to place a new line daily with a needle.

The patient or caregiver is not only responsible for the daily administration of TPN, but also to manage and care for their method of access (catheter). Management of these catheters includes:

  • daily protection and securement
  • flushing
  • cleaning
  • weekly dressing (or bandage) changes 

It is not uncommon for patients, caregivers or families to rely on external support such as at-home or infusion therapy nurses to support daily management and administration responsibilities.

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Is TPN the same for every patient?

The ingredients within TPN vary from patient to patient and are determined by the nutritional and electrolytic requirements based on the patient’s identified deficiencies.

For example, your child’s physician or nutritionist may order frequent lab work. That lab work provides critical insight into the body’s requirements. Your child’s physician or nutritionist reviews and interprets the results to determine the need for any TPN adjustments. TPN orders are then placed with an infusion (or specialty) pharmacy.

Required adjustments to your child’s total parenteral nutrition are made by the addition or reduction of nutrients, vitamins, calories, etc. It is not uncommon for TPN to also be supported by additional fats (lipids) for increased calories. 

TPN and Short Bowel Syndrome

Patients with short bowel syndrome are missing one or more parts of their small intestine, which prevents them from absorbing the proper amount of nutrients their body requires. [Resource: What You Need To Know About Nutrition And Short Gut Syndrome]

TPN is a common household term for most short bowel syndrome patients and their families. While the goal for some patients is to eventually reduce reliance on their support of TPN or additional nutrition, for some, TPN is a lifelong resource for sustaining body functions.

Regardless of your TPN course or reliance, there are several major components to successful use and management. 

  • A qualified nutritionist. The role of TPN for short bowel syndrome patients requires careful input from a certified nutritionist who is familiar with the disease state and in close communication with the patient’s physician. While TPN may be essential to survival, it does not come without the risks of improper prescription, adjustments, or use. 
  • An engaged specialty pharmacy or infusion pharmacist. While your nutritionist and clinician are responsible for the careful calculation of TPN components, your pharmacist is the supply and support mechanism. They are responsible for the fulfillment of the orders, as well as supplying the administration pumps, medical supplies, and any other required equipment. Order fulfillment requires extremely careful measurement, attention to detail, and a sterile environment. Be sure to do your due diligence and double-check each order and bag of TPN before use.
  • An understanding of TPN and its role in your or your loved one’s life. Total parenteral nutrition is a life-sustaining medical innovation, and for many, their only means of nutritional support. Unfortunately, managing TPN requires careful attention to detail, effective organization skills, clear communication ability, and a lot of patience.
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TPN Challenges and Risks

Like any other pharmaceutical solution, TPN does not come without its challenges and risks. The management of TPN requires careful administration timing, sterile setup, ongoing supply organization, and the ability to troubleshoot (often in high-stress situations). Supporting equipment such as administration pumps are commonly misprogrammed and can malfunction. It is important to remain attentive to the proper and successful administration of each infusion.

Central venous catheters pose a tremendous set of risks as they are a direct source to the patient’s bloodstream. The careful management of the catheter, the insertion site, its surrounding bandages, and securement devices are crucial to avoid bacterial contamination, limiting the risk of infection. If a patient or caregiver should notice any skin discoloration or irritation of the site, it is likely indicative of a reaction. However, the described signs can also be an early insight of infection. Patients and caregivers should also be aware of temperature, change in behavior, and other signs of infection.

Lastly, the body was not designed to receive nutritional support intravenously. The impact of long-term exposure to TPN or lipids should be regularly monitored by a clinician with routine labs, and oftentimes, biopsies or other pre-diagnostic measures. 

Realities of TPN Dependency

Total parenteral nutrition is a tremendous healthcare innovation that continues to support countless lives inside and outside of the short bowel syndrome community. If the use of TPN is important to maintain the nutritional support of yourself or a loved one, it is important that you are aware of the daily requirements for successful management and administration.

Asking for advice is not only encouraged but the responsibility for those caring for themselves or others. If you are uncertain about your ability to care for yourself or properly manage your infusion responsibilities, speak to your clinician or pharmacist. 

The Importance of Celebrating Progress for Your Child with Short Bowel Syndrome - Eclipse Regenesis Blog Featured Image

The Importance of Celebrating Progress for Your Child with Short Bowel Syndrome

“Parent” may very well be the most important and rewarding job title you will ever have. As a parent, you have three primary goals: (1) set a good example, (2) instill important values, and (3) encourage your child’s happiness. 

Navigating the early stages of child development and care can be both exciting and exhausting. Your precious bundle of joy comes into this world and they are entirely reliant on you to teach them everything. And as the days and months tick by, you’ll watch your little one meet a number of developmental milestones as they grow.

Families of children with pediatric short bowel syndrome (SBS) or other rare pediatric disease states, have the added responsibilities of their child’s daily care routine. It may often feel overwhelming. Having the right attitude is important so that you, your child and the rest of your family have the opportunity to enjoy the process.

Why it’s important to not focus solely on your child’s disease state

Raising a child is hard enough. When you add the unique care requirements of short bowel syndrome management, the day-to-day can be even more challenging. Managing SBS calls for careful consideration of clinical, dietary, pharmaceutical, and perhaps even surgical solutions.

While these considerations are important to help your child grow and thrive, putting too much focus on your child’s disease state can leave you feeling defeated. Remember that regardless of his or her disease, your child is still a child. They are counting on you to learn to do new things.

From birth to 5 years of age, there are specific milestones that your little one should reach that help them grow physically, emotionally, cognitively, and socially. It’s important to recognize and appreciate each milestone that your child meets.

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Stay positive and celebrate your child’s milestones 

Watching your child grow is exciting, but that doesn’t mean parenting comes without its frustrations. When you’re running on a few hours of sleep, your shirt is covered in spit-up or the latest puréed vegetable that you attempted to “airplane” into your kid’s mouth, and you just stepped on yet another toy in the hall, things can seem pretty bleak.

And if you are also navigating the complexities of stoma or ostomy management, there may be times when you question if you’re mentally strong enough.

The next time you feel overwhelmed, take a deep breath. It’s okay to take time for yourself and to give yourself a pat on the back, because you are doing an amazing job. And remember, no one can have it all together all the time.

Positivity is key. A positive mindset is integral to managing most of life’s challenges, and your child’s care is no exception. Take the time to acknowledge and celebrate milestones with your child (both related and unrelated to SBS). By focusing on creating positive moments, you and your child will be better equipped to push through the challenging ones. 

Setting realistic goals for your child with short bowel syndrome

Parenting requires an incredible amount of love and patience. Even more so when your child needs additional support (physically, emotionally, cognitively, etc.).

Children with short bowel syndrome may experience a more challenging time achieving certain developmental milestones. It is important to acknowledge how SBS can affect your child’s growth and to keep in mind that they are doing their best.

For example, learning to eat may seem like a natural step in any child’s development. However, for families managing pediatric short bowel syndrome, a task as small as eating can be a major challenge for them. Stay patient. Don’t expect your child to eat a full meal orally on their own. A few small bites at a time can be a big step for a child with SBS. 

Focus on helping your child make small moves in the right direction:

  • Introduce a new food
  • Weight-gain and growth progress
  • Reinforce positive behaviors at doctors appointments

By setting smaller goals and milestones along your child’s development path, your child with short bowel syndrome will build confidence in themselves. 

How to celebrate milestones, big and small 

Learning to appreciate your child’s “wins,” both big and small, encourages your little one to be proud of their achievements. They learn to recognize their worth and how their efforts pay off, especially when something seems hard.

Here are a few ways to create feel-good moments and celebrate your child’s milestones:

Offer praise or physical gratitude.

We all like a pat on the back now and then. Your child is no different. Tell them when they’ve done a good job. A hug or a kiss can be a positive physical affirmation that you are proud of them. 

Have a dance party.

There’s nothing like a little dance party. Showing your child that it is okay to openly express joy for their achievements can reinforce their actions and create positive associations for self-expression.

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Snap a photo.

“A picture’s worth a thousand words.” Capturing life’s happy moments on film has been a longstanding tradition. Pictures help us relive our proudest, most monumental experiences. 

Create a reward system.

Part of setting realistic goals for your child is motivating them to reach these goals. Rewards can help provide positive reinforcement for their hard work and perseverance. Try your child’s favorite snack or a trip to their favorite park.

Showcase their achievement.

Whether it’s a drawing on the refrigerator or a framed picture on the wall, display your child’s achievements where they can see them. It’s exciting for a child to see something they are proud of, something they did or created, displayed for everyone else to appreciate as well.

Laugh, and then laugh some more.

Take the time to laugh with your child and encourage them to continue being themselves. Laughter will be an important tool in both celebration of your child’s efforts and in turning some of the more frustrating moments into happy ones. Diaper blowout on the way to dinner? It is okay to laugh at the situation. Your child can sense when you are upset or frustrated.

Final Thought

The reality is, short bowel syndrome is a serious disease state that poses tremendous risks and can lead to a complicated management routine for your child. So it’s important to stay positive and keep things in perspective. Don’t let the daunting doctor visits haunt your family when you leave the office. Do your best, and encourage your child to do theirs.

Celebrating the small wins or achievements in and out of care management is a big deal. Celebrate and appreciate them all: their first words, first steps, and even when they wake up and take six small bites of their breakfast. It’s all important.

Understanding Pediatric Short Bowel Syndrome - Eclipse Regenesis Blog Featured Image

Understanding Pediatric Short Bowel Syndrome

As a parent, you want and hope the best for your children. When your child is diagnosed with a severe condition such as Short Bowel Syndrome, you can feel as if your world has turned upside down. Managing their disease and helping your child lead a better life becomes your top priority.

For any parent, the first step in supporting your child is to better understand their disease and the realities of management. Therefore, understanding Short Bowel Syndrome is always instrumental in dealing with it.

What is Pediatric Short Bowel Syndrome?

Short Bowel Syndrome (SBS) is a condition that prevents your child’s body from absorbing nutrients from food as it should. This is because a section of their small intestine is not functioning well, is missing or has been surgically removed. SBS generally develops shortly after birth due to an underlying gastrointestinal (GI) condition.

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What Causes Short Bowel Syndrome?

Short Bowel Syndrome in children can be present at birth. For instance, your child could be born with an abnormally short small intestine. In other cases, the small intestine fails to form fully before birth. Other times, your infant is born with an underlying GI condition that requires a section of the bowel to be surgically removed.

The condition is not always congenital. A life-threatening ailment can force doctors to remove a part of this intestine. After the surgery, your kid develops SBS. Lack of blood flow to the intestine is another issue that leads to Short Bowel Syndrome in infants.

More causes of SBS include necrotizing enterocolitis (NEC), gastroschisis, volvulus, Hirschsprung’s Disease, and intestinal atresia.

Symptoms of Short Bowel Syndrome

  • Bloating
  • Foul-smelling stool
  • Excessive gas
  • Diarrhea
  • Weight loss
  • Fatigue
  • Vomiting

Other complications that can emanate from SBS are:

How Does the Gut Adapt to SBS?

The small intestine has a remarkable ability to absorb vital nutrients. A child can lose a part of the small intestine and may not experience malnutrition. The recovery rate of children from such a loss is impressive.

Upon detecting pediatric short bowel syndrome, the body starts to adapt to the situation. Their small intestine begins to grow and adapt in a bid to absorb adequate nutrients. Note that the adaptation process takes a long time. During this time, your baby’s health may depend on other forms of nutrients and support.

How to Care for your Child in the Face of SBS

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You can do a lot for your child during the intestinal adaptation period. The ultimate objective is to provide the appropriate quality of care. Your child’s clinicians and/or intestinal rehabilitation clinic will play a huge role in helping your family navigate successful management and care during the adaptation period (and beyond).

Total Parenteral Nutrition (TPN)

TPN is a form of treatment that doctors use to provide essential nutrients through bypassing the patient’s digestive system. The solution your little one receives during this time comprises nutrients and fluids. They contain fats, proteins, sugars, minerals, proteins, and so on. These nutrients are administered intravenously.

Enteral Nutrition

Enteral nutrition is another form of feeding your child can depend on as intestinal adaptation occurs. They receive vital nutrients via a G-tube. The doctor may combine this with a bit of normal feeding to preserve the baby’s chewing and swallowing ability.

Can your Child Overcome Short Bowel Syndrome?

Clinical outcomes vary from case to case and child to child. While your child’s outcome may be influenced by countless external factors, it does not need to negatively impact or define your child’s trajectory.

As medical technology advances, the future looks bright for those with pediatric short bowel syndrome. Some promising health solutions for this problem include the first tissue regeneration therapy. To learn more about it, contact us today.

What You Need To Know About Nutrition And Short Gut Syndrome - Eclipse Regenesis Blog - Featured Image

What You Need To Know About Nutrition And Short Gut Syndrome

No parent wants to hear their child has a condition that might affect their education, family life, and overall well-being. Unfortunately, there’s currently no restorative treatment for short bowel syndrome (SBS). Monitoring nutrition is a lifelong necessity for anyone with this disorder. This means that no matter the cause of SBS, there are certain things you should know about nutrition and short gut syndrome to ensure your child has a full and nutritious diet.

Why Can Malnutrition Occur With Short Bowel Syndrome?

Short gut syndrome is when one or more parts of the small intestine are missing. Without the bowel, the child cannot absorb all the nutrients from their food, leading to malnutrition.

Malnutrition is common in SBS patients because the body has difficulty absorbing vitamins, minerals, and other nutrients. Living with short bowel syndrome means your child will need to follow a strict diet to ensure they receive all the nutrients their body needs.

These deficiencies can lead to several other health issues. For example, calcium deficiency can reduce bone strength and even cause skeletal deformities. Also, iron deficiency can lead to anemia and affect the development of the brain.

Another concern with malnutrition is fluid and electrolyte imbalances. Your child will need to take in the proper amount of fluids and electrolytes at regular intervals throughout the day.

How Do Patients With Short Bowel Syndrome Get Proper Nutrition?

Short gut syndrome is often treated with Total Parenteral Nutrition (TPN), which means that patients receive nutrients directly into their veins. TPN provides all of your child’s daily nutrition and hydration needs while bypassing the gastrointestinal tract.

Another option is a feeding tube that might be surgically placed into the small intestine, called a jejunostomy or a gastrostomy tube. Both tubes deliver liquid formula directly to the stomach, which provides your child with nutrition and hydration.

Enteral feed is a nutrient-rich solution delivered directly into the stomach through a feeding tube. It provides all of your child’s daily nutrition and hydration needs while bypassing the gastrointestinal tract, often damaged in short bowel syndrome patients.

A combination of TPN and Enteral Feeds are often used to manage short bowel syndrome. People who have an entire gastrointestinal system can receive nutrients through their gastrointestinal tract while using TPN for additional nutritional support.

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Some children aren’t proper candidates for TPN. These include those who have problems digesting fats or proteins, individuals with severe heart disease (which can’t be treated with TPN), and those with severe liver disease.

These treatments don’t come without side effects. TPN can be difficult to maintain. Common problems include infections, blood clots, and liver damage. Also, a long-term feeding tube may cause an intestinal obstruction, which is a blockage that can cause vomiting and nausea.

The Best Short Bowel Syndrome Diet

A patient with short gut syndrome will need to follow a special diet that focuses on high-calorie foods and supplements. High-calorie foods are typically rich in protein and carbohydrates but low in fiber—this is because your child’s small intestine doesn’t absorb much fiber the way a healthy intestine would. The following list includes common foods and supplements your child will need:

High-Protein Foods:

  • Meats (beef, poultry, pork)
  • Eggs
  • Legumes (chickpeas, lentils, peas)
  • Nuts (almonds, cashews)

Complex Carbs:

Carbohydrates are a vital part of your child’s diet. Their body needs the energy carbs offer. However, because your child’s small intestine can’t absorb large amounts of carbs at a time, you should focus on complex carbs, which are broken down slowly and release energy over a longer period.

Healthy grains you can incorporate into their diet include:

  • Plain banana, zucchini, or carrot bread
  • Toasted whole wheat tortillas
  • Brown or wild rice
  • Unsweetened cereal, such as Cheerios, cornflakes, Rice Chex, Rice Krispies, and Kix

Starchy Vegetables:

  • Potatoes
  • Winter squash
  • Yams
  • Plantain

Stay clear of beans.

Fruits:

  • Pears
  • Peaches
  • Cherries
  • Bananas

Limit fresh fruit because of sugar content.

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Good Fats:

There are different types of fats. Some are healthier for your child than others. Healthy fats to incorporate into their diet include:

  • Nuts and nut butters (peanut, almond, cashew)
  • Olive oil, canola oil, or flaxseed oil

Avoid heavy creams, sweetened cream cheeses, and flavored nut butter.

Overall, stay away from processed foods. Instead, cook healthy meals at home with fresh ingredients. It’s also vital to avoid sweets, snacks, and other low-nutrient foods because they cause fluid and nutrient loss, leading to malnutrition.

Ensuring your Child Stays Hydrated

Hydration is essential for short gut syndrome patients, especially if they are receiving TPN. This means your child will need to drink plenty of water throughout the day. Even if they don’t feel thirsty, encourage them to drink water regularly throughout the day because dehydration can lead to more severe health issues.

To increase electrolytes, drink a beverage that is high in potassium. Choose sugar-free sports drinks or low-sugar juices without pulp. Avoid caffeinated beverages because caffeine induces frequent urination.

Additional Supplements for Nutritional Maintenance

Your child’s doctor might recommend vitamin- and mineral supplements in addition to drinking water. Here are some supplements your child may take:

  • Fat-soluble vitamins (A, D, E, and K)
  • Iron
  • Calcium
  • Vitamin B12
  • Zinc

Your child’s doctor determines the dosage and frequency of vitamins and supplements.

What Are The Current Treatments And Advances Available?

Nutritional considerations will always be necessary. However, there are potential solutions that offer some children more freedom from long-term infusions and feeding tubes. Several treatments are available for short gut syndrome, including enteral feeds, medications, and surgery.

Some children are excellent candidates for an intestinal transplant. The procedure takes a healthy part of the small bowel or large intestine (the two sections of your child’s gut) is removed and attached to the amount of the intestine that remains. Your child’s doctor will determine if an intestinal transplant is right for them.

Short bowel syndrome is a complex disease that requires ongoing care and attention. Keeping your child healthy requires balancing their caloric intake, fluid and nutrient loss, infection risk, and other factors. Your child can lead a full life with proper support and management from devices like Central Venous Catheters, Enteral Feeds, and TPN or supplemental nutrition.

Do you want to help other parents and patients with short bowel syndrome? Share your story.

A Beginner’s Guide to Short Bowel Syndrome Blog Featured Image - Eclipse Regenesis

A Beginner’s Guide to Short Bowel Syndrome

Created for parents, by parents.

No parent expects the news. So when you receive the news of a Short Bowel Syndrome diagnosis, it’s only fair that it’s a little overwhelming. Your picture of what the future of your family looks like begins to shift, and you have to shift with it.

Let’s start off by saying, you’re not alone. There are parents, caregivers and family members who have faced the same shifting image. All of whom have knowledge and experiences that can help you visualize a new future with Short Bowel Syndrome in your life.

This is a beginner’s guide to Short Bowel Syndrome created by parents who have been where you are.

What is Short Bowel Syndrome?

Short Bowel Syndrome (SBS) is a serious and chronic malabsorption disorder. SBS occurs when parts of the intestine are removed surgically and the remaining intestine may or may not be able to absorb enough nutrients from your daily diet.

This kind of surgery, known as a Bowel Resection, is typically the result of an early condition at birth or shortly thereafter. There are many potential causes of Short Bowel Syndrome in children. Some of those causes include, but are not limited to:

  • Death of intestinal cells (necrotizing enterocolitis)
  • Stomach wall defects (gastroschisis)
  • Twisting of the intestine (volvulus)
  • Blockage in the intestine (intestinal atresia)
  • Missing nerve cells in the intestine (Hirschsprung’s disease)
  • Other congenital (birth) defects
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What A Short Bowel Diagnosis Means for Your Family

While this may not be what you had planned for your child, they can still have that future full of love, joy and success that we all wish for for our kids. Yes, every case is different. The severity of the case, remaining anatomy, as well as other complications and variables make each case unique.

For many families Short Bowel Syndrome is simply a small portion of their lives.

It means one thing: your child needs a bit more help managing important nutritional requirements than everyone else.  Short Bowel Syndrome does not change your child’s smile, their laugh, their ability to terrorize their siblings or even talk back to mom and dad. Your child has the same attitude, with just a few added responsibilities.

Short Bowel Syndrome means less intestinal tract and more poop. The more they eat, the more that comes out. The lower the absorption capability, the more complications. As parents, it’s your job to help manage and supplement the ins and outs (pun intended) of Short Bowel Syndrome.

Treatment Goals for Short Bowel Syndrome Parents

As a parent, you probably have some standard goals for your child. You want to encourage, support them and see them grow to live a long, healthy, happy and successful life.

Short Bowel Syndrome management requires the careful consideration of clinical, dietary, pharmaceutical and possibly surgical solutions. The main treatment goals for SBS patients include:

  • Maintaining essential nutrition and hydration
  • Encouraging intestinal adaptation
  • Improving quality of life
  • Reduction (and hopeful elimination) of long-term parenteral support
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Daily Management for Short Gut Syndrome Children

With your support, your child with SBS can have that bright future you want for them. But, don’t let the big picture become too overwhelming. There are habits you can build on a day-to-day basis that can make a big difference.

Some of those things include encouraging the same habits that we all need, just with a lot more patience, love and care.

  1. Proper Nutrition
    It may be as simple as making sure your child eats enough to balance their lack of absorption and managing around the close parenteral support.
  2. Laughter
    A full belly can only be improved with an extra dose of laughter. So keep them fed, and keep them smiling.
  3. Focus on the Positive
    Encourage your child, and yourself, to focus on the positives. When things get difficult, favor their strengths and help to push them through adversity to success.
  4. Cut Yourself a Break
    Patience is key when it comes to parenting. When you’re parenting andjuggling life with new complications, it’s not uncommon to lose your cool. We’ve all been there and it’s okay.

While this does not encompass everything and may not speak to the reality of every patient or family dealing with Short Bowel Syndrome, we are confident with the right attitude, support and approach, even Short Bowel Syndrome can be managed effectively.

Anything is possible (even with less intestine).

Find more information about Short Bowel Syndrome on the Eclipse Regenesis blog. We also encourage you to connect online with families living with SBS.

ECR - Blog - Short Bowel or Short Fuse

Short Bowel or Short Fuse; Finding the patience to survive with a short gut

A parents perspective

If you have not had the chance to read A Parent’s Perspective: Our Son’s Short Bowel Syndrome Diagnosis, I encourage you to do so. While the goal is to give as much insight into Short Bowel Syndrome as possible, we want to steer clear of the boring clinical information online. From one Short Bowel Parent to another, trust me, you’ll have no better teacher than experience itself. 

Last night was tough. 

I do not know about you, but our child with Short Bowel Syndrome does NOT sleep. In the beginning, we recognized a lot of it had to do with his Ostomy. I mean how comfortable can it truly be to sleep with a bag of acidic output sitting on your irritated skin? In truth, we were hoping that would change immediately following his re-anastomosis (or reconnection surgery). For a few days, it did… and then the anesthesia and pain meds wore off.

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Fast forward another 5 almost 6 months later and we are still waking up to change diapers and check to see that he is not tangled in his TPN tubing (something else I will write about at a later date, but whoever thought it was a good idea to put 10+ feet of wire in bed with a kid…no comment for now). Regardless, we just don’t sleep. 

I like to consider myself to be a pretty calm and patient person. As a parent, I pride myself on not sweating the small stuff. Perhaps it is relative to the things we have been to until this point but I don’t cry over spilled milk (or ostomy output). 

However, regardless of how patient I like to think I am, 5 hours of sleep (6 if we are lucky) a night for over a year will wear even the patients of a monk thin. 

I lost it. 

In full dramatic effect.

I grabbed my pillow. 

I stole the throw blanket. 

Unplugged my phone. 

I stumbled into my house shoes. 

And stormed off to the couch. 

“YOU DEAL WITH IT!” I exclaimed to my wife as I made my way to the couch. 

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Okay, so it’s 3:30 am, and not only did I start an argument with my wife, I recognized how small our apartment truly is. The crying, the laughing, the sudden urge to start gymnastics in the middle of the night, echoed through the halls and continued to keep me up. 

Nonetheless, whether it’s sleep or just the frustration of age-appropriate behavior. Kids are a tough responsibility and will quickly push to a point that you otherwise probably wouldn’t have gone to. 

I guess for me, this was another reminder of what my child is dealing with. In reality, the truth runs through my mind… 

He probably has to poop or has already gone. 

We have all been in the car, at the store, or in a meeting and suddenly the urge strikes. When you gotta go, you gotta go… but come on, how comfortable can that be sleeping with the urge to go or having gone and sitting in it. 

He has a lot going on.

Maybe he is hungry from just going to the bathroom, maybe his butt is sore, maybe it is the tape from his central line dressing, perhaps the G-Tube is leaking. 

I cannot even begin to wrap my head around all that he may be feeling and to be honest, how difficult that must be when you cannot open your mouth and articulate what it is that’s bothering you. 

Nonetheless, I like to think that our child with Short Bowel Syndrome is here to make me a better person. As I sit here, write and reflect on my outburst last night, I am reminded of truly how important sleep is… 

No, I’m just kidding. 

I am reminded of how short my fuse is for anything or anyone when I neglect my ability (and responsibility) to sympathize. Take a moment and truly think about the things that could be going on with the other person and within their lives.

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As the parent of a child with any condition, I like to believe that there is an immediate shift in our behavior or perspective. We are quickly humbled by our experience and reminded of how important understanding truly is. You have no clue what that family is going through, what that person is dealing with, how much sleep they got the night before (for whatever reason) and for all you know… they might have to poop! 

Deep breathes

I will keep this one short and sweet but I encourage you to take a deep breath and remind yourself truly how important patience and sympathy are in navigating your life. So rather than get upset, thank your child for the subtle reminders they send to frame your better self. 

I am going to get back to work, changing diapers, and ideally a nap. Until next time, I encourage you to share your story and join Eclipse Regenesis in changing that course for pediatric Short Bowel Syndrome patients. 

Stay strong, keep focused and remember, it’s only poop. 

– The Short Gut Parent inside of us all

ECR - Thought Leadership Article - blog

What Can Lead to Pediatric SBS?

Pediatric Short Bowel Syndrome (also called SBS or Short Gut Syndrome) generally develops shortly after birth due to an underlying gastrointestinal (GI) condition. The condition then can lead to intestinal surgery, in which part of the short bowel is removed.

SBS is a devastating condition where patients struggle to absorb life-sustaining nutrients from their diet due to the surgical removal of their intestine (or parts thereof).

What conditions can lead to pediatric Short Bowel Syndrome?

Necrotizing Enterocolitis (NEC)

The most common cause of intestinal resection in children, which then leads to Short Bowel Syndrome, is Necrotizing Enterocolitis (NEC). The Merck Manual characterizes NEC as an acquired disease, primarily of preterm or sick neonates, characterized by mucosal or even deeper intestinal necrosis. 

Over 90% of cases of necrotizing enterocolitis (NEC) occur in premature infants. It generally occurs in the first 2 weeks after a child has been introduced to oral feedings.

Surgical intervention with NEC is needed in approximately less than 25% of infants. The surgery typically involves removing the infected section of intestine, taking the healthy ends out of the skin to drain (ostomy), and then reattaching the healthy ends once they are recovered. 

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Gastroschisis

The two main abdominal wall defects are omphalocele and gastroschisis.

Gastroschisis is slightly more common than omphalocele, and occurs in approximately 1 in 2,500 live births (the latter occurring in roughly 1 in 3,000 to 5,000 live births). In gastroschisis, there is an opening of the abdominal wall near the belly button (usually to the right). The intestines spill out of the opening.

Unlike omphalocele, the intestines are not covered by a thin sac which means they can be damaged by exposure to amniotic fluid. This causes inflammation and further complications to the digestive system. Babies with gastroschisis may experience colostomy, bowel resection, intestinal transplantation, or SBS due to part of the bowel not developing correctly. Depending on the severity of the defect, one or more surgeries will be recommended. 

Volvulus

Volvulus occurs when a portion of the intestine loops around and folds over itself. This dangerous twisting of the intestines can cause a blockage and cut off blood flow. The damaged tissue may need to be removed via resection, depending on the severity of the case. 

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Hirschsprung’s Disease

The large intestine utilizes a network of nerves within its walls to control peristalsis, or the movement that muscles make in the bowel to move digested materials in the digestive tract. In Hirschsprung’s Disease, certain nerves are missing in a segment of the intestine. Due to the missing nerves, peristalsis does not occur and you are unable to have effective bowel movements. This causes a buildup of fecal matter and can sometimes lead to enterocolitis, which is inflammation of the large intestine. 

Hirschsprung’s Disease is generally detected early, as babies pass meconium within the first 24-hours of life. Delayed passage can indicate the disease and is cause for further investigation. Surgery can be necessary to remove the affected segment of the intestine.

Intestinal Atresia

Intestinal atresia is a broad term used to describe a complete blockage or obstruction anywhere in the intestine, due to their intestine not forming completely in utero. While the intestine is supposed to act like an open tube, the intestines of children with intestinal atresia are closed in one or more places. The small bowel is the most commonly affected portion. There are four types of Intestinal Atresia: Pyloric, Duodenal, Jejunoileal, and Colonic. 

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What are the treatment options for Short Bowel Syndrome?

Today, there is no restorative treatment solution for SBS. By working with a multidisciplinary team of healthcare providers, you will work together to ensure the child receives the individualized care they need. A multidisciplinary healthcare team can include a gastroenterologist, general surgeon, nutrition specialists, neonatologists, and pain management specialists.

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A Parent’s Perspective: Our Son’s Short Bowel Syndrome Diagnosis

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:

Ostomy 

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.

Central Line

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. 

– The Short Gut Parent inside of us all

National Science Foundation Grant Recipient

NSF Small Business Innovation Research (SBIR) Grant Award

Eclipse Regenesis, developer of the first restorative therapy to address Short Bowel Syndrome (SBS), has been awarded a National Science Foundation (NSF) Small Business Innovation Research (SBIR) grant of $256,000 to develop a minimally-invasive version of its Eclipse XL1 System™ for pediatric and adult patients with Short Bowel Syndrome.

Short Bowel Syndrome is a devastating condition where the small intestine is too short to absorb sufficient nutrients to sustain a patient. Current chronic therapies include intravenous nutrition, medication and intestinal surgery, which have low success rates and high five-year costs of up to $1.6 million per patient. Preclinical studies have shown that the Eclipse XL1 System promotes a process known as distraction enterogenesis in a treatment that is designed to produce new, fully functional intestine, as a way to restore natural nutrient absorption. The Eclipse XL1’s unique mechanism of action has been published in more than 20 peer reviewed publications.

“We are gratified that the National Science Foundation has recognized our novel concept that has the potential to improve and extend the lives of children and adults who are suffering with SBS,” said Eclipse Regenesis CEO Andre Bessette. “We look forward to utilizing the funds to develop a less invasive, endoscopic system that will be more accessible and improve upon the patient experience.”

“NSF is proud to support the technology of the future by thinking beyond incremental developments and funding the most creative, impactful ideas across all markets and areas of science and engineering,” said Andrea Belz, Division Director of the Division of Industrial Innovation and Partnerships at NSF. “With the support of our research funds, any deep technology startup or small business can guide basic science into meaningful solutions that address tremendous needs.”

Once a small business is awarded a Phase I SBIR/STTR grant (up to $256,000), it becomes eligible to apply for a Phase II grant (up to $1,000,000). All proposals submitted to the NSF SBIR/STTR program, also known as America’s Seed Fund powered by NSF, undergo a rigorous merit-based review process. To learn more about America’s Seed Fund powered by NSF, visit: https://seedfund.nsf.gov/

More About Short Bowel Syndrome

Short Bowel Syndrome results from the surgical removal of a large portion of the small intestine due to a congenital or acquired defect. It is a devastating condition where patients struggle to absorb life-sustaining nutrients from their diet. Common causes in pediatrics are necrotizing enterocolitis (NEC) and birth defects such as gastroschisis, volvulus, Hirschsprung’s disease, intestinal atresia, and other congenital defects. The cost of care for each patient is more than $1.6 million over five years and costs to the U.S. healthcare system are upwards of $3 billion each year.
 

About the National Science Foundation’s Small Business Programs

America’s Seed Fund powered by NSF awards $200 million annually to startups and small businesses, transforming scientific discovery into products and services with commercial and societal impact. Startups working across almost all areas of science and technology can receive up to $1.75 million to support research and development (R&D), helping de-risk technology for commercial success. America’s Seed Fund is congressionally mandated through the Small Business Innovation Research (SBIR) program. The NSF is an independent federal agency with a budget of about $8.1 billion that supports fundamental research and education across all fields of science and engineering.

About Eclipse Regenesis

Eclipse Regenesis, Inc. is a development-stage medical device company focused on harnessing the body’s own tissue regeneration capabilities to treat important diseases. Its flagship product, the Eclipse XL1 System, utilizes distraction enterogenesis in a treatment designed to mechanically stimulate the body to produce new, fully-functional intestinal tissue to address Short Bowel Syndrome (SBS). With the support of more than 15 years of scientific research and the participation of world renowned SBS thought leaders, the Eclipse Regenesis team is passionate about pioneering a restorative therapy for a devastating condition that has no cure today. The Eclipse XL-1 system is under development and not available for clinical use at this time.