The short story

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Emerson Nicole White, age 8, is a two-time multiple organ transplant recipient. She received a liver, small bowel, pancreas transplant at the University of Nebraska Medical Center in Omaha, followed by a second liver, small bowel, pancreas, and 2 kidney transplant ten months later. Emerson is one of a small few to ever receive that many organs in less than a year’s time and one of an even smaller few to survive it all. Emerson lives at home with her family in Colorado and travels back to Omaha monthly for clinic appointments and IV infusions.

This blog will chronicle the ups and downs of life post-transplant and the fighting-spirit of one little girl in her quest to live life to it’s fullest. Her resolve is inspirational and might just teach us all a thing or two about what’s most important in life.

Please consider organ donation and please discuss it openly with loved ones. It is the greatest gift you can ever give – the gift of life.

 

How it all happened, in full detail

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There are some things in life you can never be prepared for… events so profound they shake you to your core and make you question everything you know to be true – your faith, your beliefs, your dreams, your desires. On September 12, 2006 the world as I knew it changed. Unaware and unprepared for the fight ahead, I stepped onto a battlefield. On that day, those things that “only happen to other people”, happened to me…

Emerson Nicole White (Eme) was born to this world on September 12, 2006 at 37 weeks gestation in a hospital in Littleton, CO. We knew something was wrong before birth, but could never have anticipated all that happened next. Emerson was unable to nurse or take a bottle like other babies, and varied attempts to feed her in non-traditional ways failed. She was admitted to the hospital for extensive testing and ultimately diagnosed with “intestinal dysfunction resulting in complete organ failure”. Emerson’s only option for nutrition was an intravenous formula administered via a surgically placed IV line sewn into her chest (TPN). She gained weight and grew stronger with IV nutrition, but then battled infection after infection and endured multiple hospitalizations as a result.

While searching for answers, tests uncovered additional problems including abnormalities in Emerson’s liver, immune system, & chromosome structure… all diagnostic for “something”, yet specific for “nothing” (at least nothing then identifiable by medical science). We were close though… a few more tests they promised… until we heard the unthinkable, “Your daughter’s only chance for life is a risky multiple organ transplant, we’ll contact the nearest hospital that can help her tomorrow morning”. That nearest hospital was nearly 600 miles away in a different state, a different world. We stopped looking to “name” her disorder that day & have never looked back. From that day forward we focused on only one thing – her survival.

We were, and still are, a family of five: mom, dad, two older brothers and Emerson. In 2008, Emerson and I left her dad and brothers in Colorado and traveled to Omaha, NE for transplant. We were told the process would take 4-6 months. We were gone from home for nearly 4 years. The aching in my heart for all that I missed in those years will never heal. That time with my boys is lost. The parent-teacher conferences, band concerts, and sporting events have passed. My greatest hope is that they will some day grow to know I would have done the same for them.

We received “the first call” on June 18, 2008. The surgeon at the University of Nebraska Medical Center removed Emerson’s large bowel, gallbladder, appendix, spleen, and stomach. She transplanted her liver, small bowel, and pancreas. All organs were from a single, deceased donor of similar body size.

Emerson did well initially post-transplant then fell victim to a series of very severe and life-threatening infections. She spent most of the seven months following transplant in the PICU fighting for her life. She experienced one significant and prolonged cardiac code, three episodes of kidney failure, many episodes of lung failure, heart complications, and more. She was on and off dialysis and a breathing machine. Four days before Christmas she was diagnosed with a very severe bowel infection. We were told she had only a 50/50 chance of surviving through the week. On December 31, 2008 Eme lost her transplanted bowel. It had died and was removed via emergency surgery on New Year’s Eve.

Emerson was gravely ill and the outlook was grim. She would need another transplant to survive, but was much too sick to even consider it at that point. She was not supposed to survive. She was not supposed to regain quality of life worth sustaining. Doctors in Omaha wouldn’t even discuss the possibility of re-transplant until Emerson was breathing on her own, off dialysis, and strong enough to transfer out of the PICU. Still then, she had to prove she had “life”. She had to get out of bed and move. In the first week with a physical therapist, Eme broke both her legs and both her arms. It didn’t come easy, but she persevered. To the amazement of her entire medical team, Emerson battled back to list for a second life-saving transplant. This time she would need a liver, small bowel, pancreas, AND 2 kidneys. She was re-listed just ten months after her first transplant and waited only two weeks on the list. Emerson is one of a very small few to ever receive that many organs in less than a year’s time & one of an even smaller few to survive it all. Her work here on earth was not done yet…

Emerson’s recovery after the second transplant was slow and steady. Three steps forward, two steps back. We stayed in Omaha for an extended time period, battling more infections and complications… tweaking this and that… until finally she was ready to return home.

Home proved to be a difficult place, though, nearly 600 miles from the doctors who knew Emerson best. Her health declined steadily upon returning to Colorado, and after a rocky year filled with disease progression and multiple infections ultimately culminating in another cardiac code, we returned to Omaha for a lengthy admission. Emerson is home in Colorado again now, but travels back to Omaha monthly for clinic appointments and IV infusions and will be transferred back via life flight for all future hospital admissions. It’s difficult managing life in two separate states, but we’re settling into a routine and establishing our new normal. The boys shift into autopilot for one week every month and our car seems to know the way all on its own. Indeed it’s a struggle, but the only thing more difficult than having to do it, would be not needing to do it anymore. We will do whatever necessary to support Emerson in her on-going fight.

And fight she does… in pink, sparkly armor… with ribbon and bows. Emerson loves life and has no awareness that her’s has been difficult. Her wants are simple; she longs to be a “normal” little girl. She shows miraculously few side effects from the multiple cardiac codes and resultant lack of oxygen to her brain. She walks, talks, plays, and even eats! She loves her home and her puppy, enjoys riding horses, and adores her baby doll. Emerson will live indefinitely with an ileostomy and a hole in her abdomen from where urine drains. She is fed through a surgically placed IV line and administered upwards of 50 doses of different medications a day. Her veins are weak and bedside IV placement (and even simple blood draws) is a significant challenge. I’m told surgeons will never enter her abdomen again, as internal scar tissue and adhesions have made it too difficult to even identify what’s inside. I’m also told her long-term prognosis is not good and that she has “maybe a few years”. I don’t put much weight on those predictions though. We take this journey one day at a time and know there is a much higher power determining the number of Emerson’s remaining days.

In all, my daughter is alive today because two families, in their darkest hours, said “yes”. Indeed miracles abound in her young life, and what her medical team has achieved is nothing short of astounding. Make no mistake about it, though, without the selfless act of two donor families there would be no story to be told. And while Emerson’s long-term prognosis remains uncertain, what is not at all uncertain is what those families have given us… time. Time to get to know her – what she looks like, the sound of her voice, her favorite color, her favorite book. Time to make memories, a priceless gift we could never repay.

As Emerson’s mom, I’ll never understand why one mother loses her child & another survives. What I do know for certain, though, is that Emerson’s donors didn’t die for her, but that she lives because of them. Our family received the most incredible gift from two families we’ve never met. We hope they know we think of them every day.

There are some things in life you can never be prepared for… Eight years ago I was granted a miracle – a perfect bundle of undeniable imperfection, created exactly as intended and delivered to teach us all a thing or two about what’s most important in life.

There is still much I don’t know & even more I’ll never understand. This I’ve learned, though, & know for sure:

• Prayer is powerful.
• God is all mighty & He is present in all we do. His plan doesn’t always align with ours, though.
• The human spirit is inherently good. Good far outweighs evil in this world.
• Statistics are useful to clinicians. Statistics are not so useful to patients. Don’t put too much weight on statistics – unless and until they’ve studied 100 people who are all uniquely YOU, there’s really no way to predict what will happen to you.
• It’s never over until it’s over. Period.
• You can plan activities, but you can’t plan life. Life happens only in the moment that you are living it.
• Enjoy today and don’t worry about what might lie ahead. Worry won’t lessen the pain felt tomorrow, it will only steal the joy of today.
• Hope is paramount to life. Hope is the torch that shines light onto our tomorrows, without it we face darkness. No matter how difficult life gets, never lose HOPE.

We pray everyday for our young friends who never left the hospital and for the families they left behind. We’ve met many wonderful people on this journey. Sadly we’ve said far too many goodbyes.

We are forever indebted to the remarkable families who, in their darkest hours, chose organ donation. They gave all our babies a chance. They gave all our families HOPE.

We encourage you to consider organ donation and to discuss it openly with loved ones. It is the greatest gift you can ever give…

With love and sincere appreciation for your support,

Erika