SERIES PART 2: TRACHEOESOPHAGEAL FISTULA – FROM NICU TO TWO

DIAGNOSIS AND DESCRIPTION

Our initial NICU consultation offered us little hope. And the somber, blank expression on the nurse’s face while delivering our news, has been burned into my memory. With her words, our son’s birthday became the best and worst day of my life all in one.

Leaving the NICU, I didn’t think our son would survive, and I couldn’t wrap my mind around it. How could a baby who looked so perfect and healthy be so broken on the inside?

I was empty and incomplete. I just wanted to hold him, and our separation paired with the distance to the maternity ward, was unbearable.

When we finally reached my room, we were greeted by an unfamiliar nurse expecting two people in a celebratory mood. Smiling ear to ear she greeted us, “Hi! Congratulations! How are you feeling, Momma?” “Not good,” was all that I could get out.

I had been living in the hospital for 6 weeks, but in another ward. Here, strange nurses were asking me questions about myself that I wished they already knew. I wondered why, after all this time (and in a time like this) am I being asked questions about myself?

The new and unknown nurses teamed up to transfer me from my OR bed to my new bed. I can’t lie, it really freaking hurt. All feeling had returned to my post-op body. Everything was setting in. And just then, nurse Peggy walked in. I burst into tears.

Nurse Peggy was one of my antepartum nurses and more. In addition to providing care for the previous six weeks, she had become a sort of maternal nurturer to me. And to no surprise, here she was, hugging me like a daughter, while letting me sob into shoulder.

Patient with me while I tried to stop crying, she was still in the room when the surgeon arrived. I told her she didn’t have to stay. Of course, she didn’t listen.


Now, it is no exaggeration to say our whole life changed when the surgeon began speaking.

Smiling and confident, he said the words we were least expecting. Our son’s condition was treatable with surgery. And more, he assured us our son’s life-saving operation had a near 100% survival rate.

Looking at each other in disbelief, my husband and I tried to make sense of his words. The surgeon continued, “Surgery needs to happen soon. These babies can only get nutrition through an IV and it doesn’t keep them satisfied for long.” Our son’s operation was scheduled for the following morning.

We were warned our son would be on a respirator following surgery, and would need additional exams to determine whether or not he had further, associated complications.

In turn, we asked him questions about our son’s future that he couldn’t answer with certainty. But, at last, we had reason to believe that our baby could survive. And to top it off, we were given permission to return to the NICU. We were finally going to be with our son.

It took months, maybe years, for the fear and shock of our son’s diagnosis to wear off of my husband and I. We’ll be grateful everyday for the rest of our lives, but we still don’t understand why we were given zero hope that morning in the NICU.


So what is tracheoesophageal fistula? Here are some quick facts, with links to the supporting medical websites below:

  • Tracheoesophageal fistula is a birth defect where the esophagus and trachea (airway) have an abnormal connection
  • TE fistula often occurs with esophageal atresia. Meaning the esophagus grew in two parts. One part connected to the mouth, the other part connected to the stomach (see below image)
  • The only way for these babies to eat and drink on their own is with corrective surgery. The surgery needs to create a full and secure connection between the mouth and stomach via the esophagus, and between the airway and lungs via the trachea
  • TE fistula occurs in approximately 1 in 5,000 babies
  • Up to one half of babies with TE fistula also have another serious birth defect including heart, digestive tract, kidney, and muscular/skeletal problems. X-rays and further testing would be necessary
  • TEF was a “hopeless congenital anomaly” not long ago. The first successful repair surgery was not until 1941. With survival rates nearing 100% only in the last few decades

For TEF SERIES PART 1: PREGNANCY AND DISCOVERY, visit:

https://believableshe.com/2021/06/03/series-tracheoesophageal-fistula-from-nicu-to-two/


REFERENCES

https://www.stanfordchildrens.org/en/topic/default?id=tracheoesophageal-fistula-and-esophageal-atresia-90-P02018

https://www.akronchildrens.org/kidshealth/en/parents/te-fistula-ea-html.html

https://www.medscape.com/answers/186735-99657/when-was-the-first-successful-repair-of-tracheoesophageal-fistula-tef

SERIES PART 1: TRACHEOESOPHAGEAL FISTULA – FROM NICU TO TWO

PREGNANCY AND DISCOVERY

***Please be advised. This story contains medical descriptions.

When our son was born with a pair congenital defects called tracheoesophageal fistula (simply known as TE Fistula or TEF) and esophageal atresia, we had no warning. My husband and I found out the day he was born, and we were offered little more than surgical plans.

Desperate to know what this diagnosis meant for our son’s future, we scoured the internet for real-life stories. What we found couldn’t even be considered a hand full, but they were our life-line.

With hopes of providing peace to families who are, or will, find themselves in a similar situation, I am sharing our story through a series of posts called, Tracheoesophageal Fistula – From NICU to Two

If you, your child, or loved one has gone through this diagnosis, I encourage you to comment, ask questions, and share your experience. Your stories matter.


My pregnancy was riddled with complications. I begin our story here because many of these complications disguised themselves as common conditions that do not indicate TEF. Looking back, it is now clear that I had a very specific combination of factors resulting from our son’s defects.

In my second trimester, I was diagnosed with a case of placenta previa. Initially, the condition was described as mild enough to correct itself. So when I began hemorrhaging at twenty-six weeks, it surprised me and my OB.

Needing constant observation, I was prescribed hospitalized bedrest. While hospitalized, I had numerous ultrasounds. None of which detected TEF.

As my pregnancy progressed, I also began leaking amniotic fluid. Although concerning to my doctor and nurses, I had an unusually large volume of fluid, so they assured me our baby was safe.

The danger of too much fluid, however, lies in the fact that it can cause the uterus to expand too fast. This expansion caused my placenta to begin detaching from my uterine wall. This detachment caused my bleeding to become more frequent. And my frequent bleeding led to an emergency C-section at 34 weeks.

In utero, babies practice swallowing by “drinking” amniotic fluid. TEF meant that our son’s esophagus did not connect his mouth to his stomach, so he could not practice this developmental step. This lack of practicing caused fluid to build up, and led to severe bleeding. This is the warning that was missed.


I was anesthetized for my emergency C-section. Due to risk of severe bleeding, I could not have a spinal block and my epidural made me sick. Not being numbed enough, I felt the first cuts into my abdomen, and I begged to be put under.

The first thing I remember after waking, was a nurse telling me I had a beautiful baby boy with sandy blonde hair. She was kind and smiling, and assured me that I could see my baby soon.

Though feeling hazy, it didn’t seem too long before my husband was allowed to enter post-op. Joined by a nurse (or two) we were brought to our son. Still laying in my hospital bed, I was wheeled through the halls to the NICU. I remember feeling disappointed that I wasn’t awake to greet my son, but so excited to hold him for the first time.

Being wheeled in on a bed drew attention, and I was uncomfortable feeling every eye on me as we entered the NICU. But then I saw him. Lying on his tummy, in his incubator, beautiful as could be.

Because of my complicated pregnancy, we knew he would be premature. We were previously prepped by NICU nurses, and his IV, mass of cords, and beeping monitors didn’t scare us. But I still remember shaking while reaching through the incubator hole to touch his sweet baby back as gently as possible. I remember telling him that he was perfect.

There was a full team of nurses surrounding us and our baby. A few in scrubs, and one in office clothes. Given the circumstances, the amount of people didn’t seem strange. But then the woman in office clothes started talking.

I am paraphrasing today, because the next several minutes were honestly a blur. But she said something to the effect of, “We need to talk. There has been an unforeseen complication.”

Her face was serious. Her words were frightening. Still recovering from anesthesia, her words came at me as fractured bits and pieces.

“You can’t hold him right now.”

“We couldn’t get a feeding tube down his throat.”

“He needs more tests.”

“Tracheo…fistu…”

“He’ll need an operation.”

“We don’t know… We don’t know… We don’t know…”

“Time to go back to your room. The surgeon will be in to see you.”

With only moments to spend together, I told my son I loved him, and he was still perfect. Then, confused, heartbroken, and expecting the worst, I was wheeled back to the maternity ward without him.


For TEF SERIES PART 2: DIAGNOSIS AND DESCRIPTION, visit:

https://believableshe.com/2021/06/08/series-part-2-tracheoesophageal-fistula-from-nicu-to-two/

LIVING WHILE WAITING

Today, the residents of Minnesota’s Twin Cities are living while waiting, myself included.

Collectively, and regardless of what outcome we’re individually anticipating, we are waiting for a jury of our peers to decide if a police officer is guilty of murder.

Simultaneously, while wondering what world we’ll be living in after the results are read, we are waiting to find out what precedent for accountability will be set and what chaos will ensue.

Will sleepless nights of riotous noise, indistinguishable from gunfire and bombs, return to our communities? Will our black neighbors have to continue living in fear of a traffic violation? Will all law officers continue to be judged upon the actions of those who, without consequence, abuse their power?

So, with all of this waiting going on, I can’t help but wonder, how is everyone managing? What action or inaction is appropriate right now? What do we do while we wait and wonder? How do we combat feelings of helplessness?

As comforting as our morning beds are before we’ve accepted the realities of our day, it’s just not practical to maintain that blissful state of ignorance. We need to figure it out. We need to earn a living. We have to keep going.

So we fight through the fog of living in limbo and manage.

Some, terrified that their livelihood is in jeopardy, are managing by boarding the windows of their businesses. Activists, hoping to influence the outcome, are managing by marching for action in the streets. While others are ignoring the news, but managing by quietly praying for peace from their homes.

How do you manage to carry on while waiting for a life changing event? Do you mentally prepare by obsessively researching online articles? Do you pray? Do you live in avoidance and just stay busy at all costs?

No judgement here. Because what am I doing? I’m sitting at home, hanging out with my toddler, and struggling to wrap my mind around what is morally appropriate to write about today.

The only conclusion that I can come up with is the fact that there really is no wrong way to survive limbo. We just have to do it. To put it plainly, limbo sucks, and it’s a confusing place to exist.

So keep fighting, keep preparing, keep managing. Just keep living while waiting.

10 SIMPLE WAYS YOU CAN SUPPORT A CHILD OR TEEN WITH HARMFUL PARENTS

Have you ever suspected that a child has harmful parents? Have you ever wondered if there is any way that you can help? Have you ever wondered if you should even get involved?

Well the answers are simple. Yes, there are ways you can help. And yes, you absolutely should get involved. Plus, making a difference is not as difficult as you may think.

But why should you get involved?

It takes a village to raise a child, right? Well, a child with harmful parents is particularly reliant on non-parent role models.

From debilitating mental illness to criminal behavior, trauma experienced in developmental years can be detrimental to a child’s future. Without support, the risk of detriment is much greater.

So, what do I mean by harmful parents anyway?

These are the toxic parents that are not putting their child’s life in danger by direct means. In other words, they are not abusive towards them in the most severe sense of the word, and removing their children from home is not an option.

Instead, these are the emotionally abusive parents that constantly invent new ways to tell their child that they are worthless. These are the addicted parents that fail to buy proper groceries. These are the neglectful parents that do not take interest in their child’s life. These are the physically abusive parents that know how to not leave a mark.

Often times, these parents are a combination of all of the above.


1. WITH ALL SUSPECTED CHILD ABUSE, DO NOT IGNORE YOUR GUT

Denial is very real when you suspect that a child is being harmed. You can easily convince yourself, in all kinds of ways, that “it can’t be that bad” and “you shouldn’t get involved”.

2. BELIEVE THE CHILD THAT OPENS UP TO YOU

It takes immense courage for a child to seek help. If they chose you, they trust you. Please listen with an open heart and believe them.

3. DO NOT TAKE THEIR PARENTS WORD FOR IT

Just because they are bad parents, it does not mean that they do not want to be parents. Many are well versed in how not to jeopardize custody of their child, or sabotage their own image as a capable parent.

4. ASK, AND ASK AGAIN

Children who are experiencing abuse are often conditioned to believe that their experiences don’t matter. Downplaying and denial are common responses. Just because they have told you once (or even twice) that everything is okay at home, it does not mean that it is.

5. ACCEPT THAT YOU MAY NOT GET INSTANT GRATIFICATION FOR YOUR EFFORTS

Your kindness may go seemingly unappreciated. The child themselves may not even realize your goodwill until they have matured and reflect back on their life.

6. VOCALIZE THAT YOU CARE ABOUT THEM

This can be as simple as asking a student how their weekend went, or as substantial as telling a child in your extended family that you love them.

7. VOCALIZE THAT YOU BELIEVE IN THEM

This may be the most impactful action you can take. Almost nothing will promote fortitude more than telling children that they are brave and capable. Positive reinforcement is crucial when a child is being, or has been, verbally and emotionally abused.

8. CREATE OPPORTUNITIES TO LISTEN

If you are unable to provide them with access to therapy, provide them with opportunities to talk with you. Take them to get ice cream, offer to go for a walk, become a trusted friend.

9. ASK THEM HOW YOU CAN HELP

Depending on the age of the child, and how close your relationship is, help will look different. For example, a younger child may respond that they need a comforting toy, but an older teenager may express that they need a safe place to stay when things are bad at home.

10. CHECK IN AS OFTEN AS YOU CAN

Even if your life, or relationship with the child, makes it impractical to have a weekly hang out, brief follow ups, asking how they have been, will have significance.


Through becoming an adult and mother, I have gained perspective. Today, I am able to fully appreciate how adults from my childhood positively and negatively impacted my life as a whole. From the adults that disappointed, to the adults that supported, they all had a role.

I sincerely hope that my reflections and advice will encourage you to recognize and support the child in your life that is living with harmful parents.

Always remember, there is no act of compassion too small. And never underestimate encouraging words. They can support for a lifetime.

OBTAINABLE FETISH – A WORD FOR THE “EXOTIC” GIRLS

From a young age, you received signals that marrying a white man would raise your status.

Signals from the media, from society, signals from your mother.

The signals that devalued your male counterparts were so strong that you came to resent your own identity. You felt less than.

Your societal insecurities lead you to become gracious of admiring men whose intent was only to have you in their bed.

Not knowing it was temporary, you felt beautiful, unique, special.

Special until you realized that you were a conquest. A checked box. A fetish.

Because, he had been receiving signals too.

Signals from the media, from society, signals from his father.

His signals told him that you were exotic, obtainable, submissive.

Knowing it was temporary, he felt powerful, entitled, superior.

Replaceable and devoid of value, he put you away with the other trophies. All hollow beauties that unwillingly perpetuated his belief that you were always his property.

Who found who? Who was the match maker? The media? Society? Your parents?

To the girl wondering if he loves you, or if he desires you for the fetish that the world has reduced you to…

Know, you are more than the sum of your parts. You are whole, you are human, and you are you are worthy of love that honors your mind, body, and soul.

It is the world that needs to raise its status. Not you.

I WOULDN’T BE SELECTED

Every mother knows the scenario. Your toddler is in the other room playing, when the room suddenly goes silent. Then, CRASH, tears, and “Mama!” is desperately cried out.

You rush in, assess the situation, and scoop up your little one. And in that moment, you are so relieved that you are there to provide the comfort and cuddles that they were hoping for.

I am forever changed because it has become instinctual. From now on, every call to “Mama” will hit that primal spot in my heart like a bullseye, and call me to action.

Which is why I wouldn’t be selected.

I am incapable of avoiding the visceral response that occurs when I hear a cry for mama. So there is nothing that could convince my soul that when a grown man named George Floyd called out to his mama, it was anything but a desperate cry for help, comfort, and life.

We just passed the one year mark of Covid being declared a pandemic, and my home town is currently bracing for the trial of Derek Chauvin. So far, six fellow Minnesotans have have been chosen to serve as jurors. One of six are women.

So this morning, I can’t help but wonder, is it because mamas are women?