My Son: The Warrior

Getting a Diagnosis

At 13 weeks, our son was diagnosed with multicystic dysplastic kidney on his left side, a condition that impacts the kidney’s ability to function. Because he was small, we were told that it could impact the viability of the pregnancy if his right kidney was also impacted. We were scheduled for several ultrasounds, one at 16 weeks, one at 20 weeks, and one at 24 weeks. At each of these scans, the doctors came to a different conclusion about what was happening with our son’s kidney, ranging from MCDK to multiple collection chambers. At the last scan, the doctor recommended we get a second opinion at CHOP, as fetal diagnosis is their specialty.

After several hours of imagining and tests, the doctors concluded that our son had NONE of the previously diagnosed ailments. Instead, he had something called a UPJ obstruction which was causing his kidney to back up with fluid. The doctors noted that the kidney was growing at a relatively rapid rate and was pressing on my son’s stomach and intestines. He would need surgery quickly after birth to ensure that his eating and digestion were not negatively impacted.

We met with the head of CHOP’s NICU to discuss the plan for our son after he was born. After he was born, the plan was to let me hold him for a few moments before allowing the NICU team to assess him. If the assessment went well, they would allow us the golden hour before taking him to the NICU for observation and surgery prep.

Hayes's Arrival

In the meantime, I was also being monitored for polyhydramnios, which ultimately led to an emergency induction at 37 weeks. My body wasn’t ready, so I spent 60 grueling hours in labor as the doctors tried every trick in the book to convince my body it was time for my son to make an entrance. After some success with a third foley bulb, they decided to break my water, a decision that resulted in an emergency c-section as my son flipped into a breach position. At this point, I had been awake and in pain for the past 48 hours and was approaching a sense of delirium.

Hayes Anders was born at 4:50 a.m. on July 1^st. He was a little over 8lbs and had a head full of red hair. I cried when I heard him cry for the first time, and cried even harder when the nurse said he was a redhead (something I desperately wanted.) But I was still delirious and on so much pain medicine. So, when the doctors never handed me my son, my brain blocked out the reality of what that meant. Instead, I told myself that this was part of the plan.

All Is Not As It Seems

It wasn’t until I was back in the recovery room that I was filled in on the full story. Hayes was diagnosed with a rare condition called Tracheoesophageal Fistula and Esophageal Atresia (TEF-EA). Essentially, it’s a life-threatening condition that impacts the development of the esophagus and trachea. He needed emergency surgery and he was scheduled for it at 5:00pm that night, just 12 hours after he was born.

I begged the nurses to let me see my son before his surgery, despite still recovering from major abdominal surgery. Reluctantly, they obliged. Seeing my son for the first time, a breathing tube inserted down his perfect throat, tubes and wires seemingly covering his entire body, was the most heartbreaking moment. As a parent, nothing can prepare you for that kind of helplessness.

Luckily, he was already at one of the nation’s best children’s hospitals and one that just so happened to have a team that specializes in this specific condition.

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The Esophageal and Airway Treatment (EAT) team is one of the best (if not the best) in the country for TEF-EA. The team includes six specialist teams that help ensure your child's condition is monitored from every angle. Having the nation's best specialists at our fingertips has made all the difference.

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His TEF-EA surgery went well and he was back at the NICU later that night. He spent a week in the NICU before being sent to a transition unit. The doctors were optimistic that he’d be released in a few days, but every time it seemed like we were making progress, there was a setback.

But What About the Kidney?

Because the TEF-EA was so life-threatening, the kidney condition had fallen to the backburner. But I never forgot what the doctor told me: his kidney was putting pressure on his stomach. So, after much advocacy, Hayes was sent for testing and sure enough, the kidney had become so large that it was impacting his ability to eat. A second surgery was scheduled and Hayes had a nephrostomy tube placed in his kidney to drain out the excess fluid.

Within 24 hours, he was eating like a champ, his volume going up every day. Again, the doctors and nurses were optimistic that he’d be discharged. Again, he hit another setback. The nephrostomy tube kinked, causing a blockage and he was sent back to the OR to have a new tube placed. Recovering from this second surgery took a toll on his little body, and he took more than a week to recover.

But recover he did, and showed the doctors just how resilient he was. After 34 long days in the hospital, Hayes came home on August 4^th, and we thought most of our troubles were behind us.

A Terrifying Setback: Part 1

Two weeks after we returned home, his nephrostomy tube clotted and clogged, prompting the need for yet another procedure to replace it. The procedure was scheduled for August 26^th.

Then, on August 25^th, Hayes stopped breathing and turned blue during a feed. We rushed him to the hospital where we were informed that Hayes has severe tracheomalacia. In other words, he has a floppy trachea that can easily collapse, especially when under stress. However, Hayes was looking at a worst case scenario. His collapsed with almost every breath he took.

The doctors debated, but ultimately decided he was safe to return home. So, home we went with a new nephrostomy tube and a litany of symptoms to look out for that would indicate a need for another emergency visit.

It felt like I was holding my breath every day. Hayes struggled to eat due to his tracheomalacia, and his breathing always sounded labored. He slept a lot, mostly because he was working so hard just to keep air flowing into his lungs. I knew it was only a matter of time until our hand was forced.

A Terrifying Setback: Part 2

That time came on September 21^st. We’d just finished watching the Eagles game on our deck and I came inside to feed Hayes. A few moments after I offered him the bottle, he had a big spit up. My heart stopped. I could tell right away that this wasn’t a normal spit up. He was struggling to clear the milk from his nose and mouth. I grabbed his aspirator and did the best I could to help him, but nothing helped. For a second time, I watched my son turn blue and stop breathing.

Time stopped. All I remember is begging Hayes to breathe as I did all the rescue maneuvers we were trained on at the hospital.

Please, just breathe. 

My husband called 911 and the ambulance arrived in less than 5 minutes. Somewhere between my begging and the arrival of the ambulance, Hayes took a shallow breath and slowly recovered.

Surgery No.5

The next day, we were evaluated by the Speech specialist on the EAT team and got the news I’d known all along. His trachea was no longer safe for him to eat by mouth. An NG tube was placed and he was scheduled for yet another surgery. And while the first surgery he ever had saved his life, this surgery was by far the biggest. A tracheopexy is a several-hour-long procedure that can often involve many different approaches. For Hayes, it meant 3 major adjustments:

1. Moving his esophagus from the left side of his trachea to the right side;

2. Suturing his trachea to his spine to keep the trachea from collapsing

3. Cutting out a strip of his trachea and reconnecting it to correct the shape of the trachea and prevent further collapse

I cried when they took Hayes back for this surgery, knowing that they would need to cut into his back and his neck to ensure that he could return home healthy. He had the surgery on September 24^th and was admitted to the PICU. That night was rough. He had another apnea event and a code was called to his room. Watching dozens of doctors and nurses flood to his bedside is something I will never forget, but he again recovered on his own and was immediately placed on breathing support.

We spent a week at the hospital after surgery, and he again showed everyone just how much of a fighter he is. We came home on October 2^nd, just a few days before mine and my husband’s birthdays, and it was the best gift we could have received. He’s been home since and has continued to show us how resilient we all have the capacity to be.

A Warrior Through and Through

His little life did not start off the way we’d hoped, and the memories of what he went through will haunt me for the rest of my life. But somehow Hayes still wakes up every morning with a smile.

My grandfather often joked that my husband looked like a Viking. He called him Eric the Red. So when we found out we were having a boy, I wanted to give him a Viking middle name. We chose Anders. It means “warrior.” And he is every bit the warrior we named him to be, complete with the battle scars on his back and neck to prove it. He wields a smile that can melt even the iciest of hearts and brandishes a presence that forces you to show up as your best self. He just started to figure out how to laugh and is working on his rolling skills. He loves to play with his hands and even spent some time yelling at the Eagles on TV this past Sunday.

When I wake up in the middle of the night to feed him, all I think about is how grateful I am that he’s still here. That I get to hold him and snuggle him every day. That his little coos and laughs still fill our house and bring us a joy I didn’t know was possible.

If you’re still here, thank you for reading all the way through. Thank you for honoring Hayes’s story with your presence. I hope his story can be a reminder to all of us that we are all capable of his resilience and that the love we have for one another is the most precious part of being alive. I hope his story is a reminder to slow down—to live life one day at a time. One moment at a time. Because that’s all there is. Just this moment. And I’m choosing to live it with as much hope and love as I can muster.

A Special Thank You

Having a child in the hospital is a soul-crushing experience. Knowing there's only so much you can do and having to rely on others to help your child get well is a kind of helplessness that eats away at your psyche. The beauty of CHOP is that those doctors and nurses were also there for me and my husband. They were there to celebrate every win and comforted us through every setback. To the CHOP nurses in the NICU and the transition units, you are truly angels on this earth. I am forever grateful for your kindness, compassion, and humor through the most challenging time of my life. To the CHOP doctors, I truly believe you saved my son's life. Without his latest surgery, I fear we may have been dealing with a much different outcome. I will never be able to truly thank you for giving Hayes a life to look forward to. I love all of you.

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TL;DR

My son, Hayes, was diagnosed with several different kidney conditions before finally being diagnosed with a UPJ obstruction just a few weeks before he was born. The plan was for him to receive surgery shortly after birth and recover in the NICU for a few days.

However, after an emergency induction at 37 weeks led to an emergency c-section, the doctors realized that Hayes was facing much more dire problems. Hayes was diagnosed with a rare condition called Tracheoesophageal Fistula and Esophageal Atresia (TEF-EA). Essentially, it’s a life-threatening condition that impacts the development of the esophagus and trachea. Emergency surgery was our only option, which he was scheduled for just 12 hours after he was born.

Luckily, he was already at one of the nation’s best children’s hospitals and one that just so happened to have a team that specializes in this specific condition. His surgery went well and he was back at the NICU later that night.

Over the next several weeks, we battled a number of setbacks, mostly centered around his ability to eat and grow. After several tests and imaging, the doctors found that Hayes’s kidney had become so large that it was pushing on his stomach and impacting his ability to eat. A second surgery was scheduled, and Hayes had a nephrostomy tube placed in his kidney to drain out the excess fluid.

Within 24 hours, he was eating like a champ, his volume going up every day. Then, the nephrostomy tube kinked, causing a blockage and he was sent back to the OR to have a new tube placed.

After 34 long days in the hospital, Hayes came home for the first time on August 4^th, and we thought most of our troubles were behind us.

Two weeks after we returned home, his nephrostomy tube clotted and clogged, prompting the need for yet another procedure to replace it. The procedure was scheduled for August 26^th.

Then, on August 25^th, Hayes stopped breathing and turned blue during a feed. We rushed him to the hospital where we were informed that Hayes has severe tracheomalacia. In other words, he has a floppy trachea that can easily collapse, especially when under stress. However, Hayes had an even worse case. His collapsed with almost every breath he took.

The doctors debated but ultimately decided he was safe to return home. So, home we went with a new nephrostomy tube and a warning to return if there were any issues with his breathing.

Just three weeks later, on September 21^st, Hayes again turned blue and stopped breathing.  

My husband called 911 and the ambulance arrived in less than 5 minutes. Somewhere between my begging and the arrival of the ambulance, Hayes took a shallow breath and slowly recovered.

The next day, we were evaluated by the Speech specialist on the EAT team and got the news I’d known all along. His trachea was no longer safe for him to eat by mouth. An NG tube was placed, and he was scheduled for a tracheopexy that week. A tracheopexy is a several-hour-long procedure that can often involve many different approaches. For Hayes, it meant 3 major adjustments:

1. Moving his esophagus from the left side of his trachea to the right side;

2. Suturing his trachea to his spine to keep the trachea from collapsing

3. Cutting out a strip of his trachea and reconnecting it to correct the shape of the trachea and prevent further collapse

He had the surgery on September 24^th and was admitted to the PICU. That night was rough. He had another apnea event and a code was called to his room.

We spent a week at the hospital after surgery, and he again showed everyone just how much of a fighter he is. We came home on October 2^nd, just a few days before mine and my husband’s birthdays, and it was the best gift we could have received. He’s been home since and has continued to show us how resilient we all have the capacity to be.

My grandfather often joked that my husband looked like a Viking. He called him Eric the Red. So when we found out we were having a boy, I wanted to give him a Viking middle name. We chose Anders. It means “warrior.” And he is every bit the warrior we named him to be, complete with the battle scars on his back and neck to prove it. He wields a smile that can melt even the iciest of hearts and brandishes a presence that forces you to show up as your best self.

I hope his story can be a reminder to all of us that we are all capable of his resilience and that the love we have for one another is the most precious part of being alive. I hope his story is a reminder to slow down—to live life one day at a time. One moment at a time. Because that’s all there is. Just this moment. And I’m choosing to live it with as much hope and love as I can muster.