Never say Never

Kidney transplant patient defies the odds by reaching graduation milestone.

Seeing a child don a graduation cap and gown brings a mixture of joy and relief for all parents. For Tiffanie Harris, it was a triumph.

Tiffanie, of Corpus Christi, Texas, didn’t expect to see her daughter, Elisabeth, live to her graduation from Flour Bluff High School.

That she even made it to her first birthday was a miracle.

At six months pregnant, Tiffanie learned her baby would be born with health complications that meant she wasn’t likely to live long. She and a team of doctors and healthcare staff at Driscoll Children’s Hospital set out to do everything in their power to change that outcome.

“She's seen in her 18 years of life what people would have seen in probably 50 years of life,” says Dr. Samhar Al-Akash, pediatric nephrologist. “If she had a paper chart nowadays, she’d probably have 100 volumes, and I'm not exaggerating.”

Elisabeth’s 59 surgical procedures meant that she spent much of her childhood at Driscoll since shortly after her birth in 2003.

In spite of those difficult years, Elisabeth remained resilient, even to those who know her best. Carol McLaughlin, Driscoll health plan service coordinator, says, “What stood out to me about Elisabeth was that on the outside, she looked like a normal everyday kid. But when you went into her chart and looked at her ailments, she is the farthest thing from a normal kid. She has so many different diagnoses.”

Celebrating graduation with Driscoll’s care team

Elisabeth’s graduation this past May was a tribute to her determination, her care team’s support and her mother’s love. Reflecting on all that Driscoll’s did to give Elisabeth the best life possible, McLaughlin says, “Elisabeth graduating means hope. And it means endurance. To me it shows hope not just to Elisabeth but to all the other families that are out there who are going through issues like this. Never say never. Anything is possible.”

While only 18, Elisabeth, has the maturity to recognize the magnitude of her personal milestone. She has no doubt it’s a tremendous achievement for her and her mother, along with her entire care team at Driscoll.

To honor that, she surprised everyone on staff by deciding to host her graduation photoshoot at Driscoll Children’s Hospital. “Your graduation photos should show who you are as a person. And this is like a home to me. It's who I am. I wanted my photos to show who I really am,” says Elisabeth.

The early years as a kidney transfer patient at Driscoll Children’s Hospital

At birth, Elisabeth’s main diagnosis was kidney failure, which led to a kidney transplant at age three. All did not go as planned. “There were a lot of unexpected complications and a lot of challenges that she had to deal with,” says Dr. Al-Akash.

For Tiffanie, having a child born with so many diagnoses exponentially compounded the challenges of being a single mom in college. For three years before Elisabeth’s kidney transplant, Tiffanie spent nights alternating between feedings, changing diapers and dialysis.

“Before her transplant, it was medical all the time,” says Tiffanie.

In Elisabeth’s early years, Driscoll wasn’t yet doing transplants in the hospital. Elisabeth was referred out to pediatric hospitals in Houston and San Antonio. Both rejected her for transplant because she was still too small. Her mother explains that in order to fix her bladder, Elisabeth needed to get bigger. In order to get bigger, she needed a kidney. But in order to get a kidney she needed a functional bladder.

“It was a vicious cycle,” says Tiffanie.

Soon after hearing no from other hospitals, Driscoll began accepting patients for transplant. The nephrologist and urologist physicians on staff examined her and decided she was a good candidate for a kidney transplant.

That yes was the lifeline Tiffanie needed.

At age three Elisabeth got a new kidney, one that she’s had for 15 years since. “We’ve put that kidney through the ringer, and it keeps bouncing back,” says Tiffanie.

But the transplant didn’t mean that Elisabeth was out of the woods yet, as her mother and care team had hoped. Complications from the transplant and other diagnoses kept Elisabeth in the hospital some years for up to 100 days.

“She got the kidney, and more diagnoses came out. They told us, ‘Don’t make plans,’” says Tiffanie. “But she just kept proving everybody wrong. She kept bouncing back every time.”

How one parent coped with her child’s serious illness

No parent should ever have to choose between watching their child suffer and letting them go. But Tiffanie made that choice over and over again from the moment she heard her daughter would be born with so many complications.

Tiffanie coped in the only way she knew how, by giving her daughter the best care possible. In Driscoll, she found the right medical partners to make that happen.

“I tried really hard not to prevent her from being a kid as much as possible. Whatever I could allow her to do, we allowed,” says Tiffanie.

That approach to Elisabeth’s care was one that Driscoll Children’s Hospital brings to every patient. Carol McLaughlin, who coordinated Elisabeth’s care, says “Driscoll allows us to have the freedom to do what we do for these kids, to never say no, to allow them to live in the least restrictive environment possible and to be able to get out in the world and show how wonderful they are.”

All of Elisabeth’s extended time in the hospital throughout her childhood meant she made the space her home. Tiffanie spent so much time in the facility that a security guard once asked her about what floor she works.

One year Elisabeth was hospitalized on her birthday, so Tiffanie relocated her daughter’s party to the Driscoll cafeteria. “We had her cake and everything, and Driscoll let the whole family and her friends come. We had a big ol’ party in y’alls cafeteria because we were admitted,” recalls Tiffanie.

For McLaughlin, that pivot to move the party to the hospital was one of many she sees for Elisabeth and all 50 of the Driscoll kids’ cases that she manages.

“It’s never just a job. These are our children, and you have to mold them, to let them be free and to let them be everything they can be. We cannot hold them back or put restrictions in their way that restrict them from being the best they can be. No child with a disability should be kept in. You have to push them out in the world and tell them to do everything in the world that every child does and just adapt in the way that they need to do it.”

As for Tiffanie, while she admits to feeling powerless in the face of so many challenges, she would do it all again if she had to.

Facing the teen years with multiple diagnoses

These days when asked, Elisabeth cites her ailments the way other teens list extracurricular activities. “I have the bones of an old person. I'm going blind...”

In her next breath she jokes, “I can’t be serious about my medical. It’s a serious thing, but it’s not. A new diagnosis is told to me, and I’m like, cool. When I found out I was going blind, I was like, ‘Oh, I get a stick, and I can’t see! If I accidentally trip someone, oh well. I can’t see you!’ It’s just how I deal with it.”

It’s not that Elisabeth doesn’t know the gravity of what it means to live with a slew of serious diagnoses. Humor helps her cope with the uncertainty and pain she faces every day. Adolescence meant walking a tightrope. She balanced the typical carefree teen attitude of YOLO – You Only Live Once – and her actual reality of knowing that every day could be her last.

“I’m definitely learning to take one day at a time and enjoy every day as if it’s my last because it could be.”

Elisabeth’s outlook wasn’t always this way. There were early teen years where Elisabeth says she kept everything inside, unsure how to deal with it. She felt alone, teetering between the struggles of middle school and high school and her uncertain health.

“It affected my childhood a lot,” she says, peering out over thick glasses with perfectly winged mascara-lined eyes. “I spent most of my childhood in the hospital, in and out of surgeries.”

A good friend had the courage to let Elisabeth’s mom know just how much she was struggling.

As a mother, Tiffanie says there’s no pain like watching her daughter struggle without any way to fix it. “There were quite a few struggles, especially in middle school and going into high school. She really wanted to hide who she was. She didn't want other kids to find out. She didn't want to be different. She hated the fact that she was different.”

They were able to get the help of a psychiatrist and even round the clock care to ensure she had the support she needed. “Since then, she’s been able to open up. A lot of people know about her health now. Before, no one knew about her health,” says Tiffanie.

Elisabeth gave her mother and her care team a scare numerous times throughout her medical journey. “There were nine times that I thought I might lose her,” says Tiffanie.

Through it all, the Driscoll family was there for them, medically and emotionally. “They have helped me throughout the years and always been here for me. We are like family.”

Tiffanie describes the feeling of watching your child struggle as complete chaos. She vacillated between helplessness and anger. Ultimately, she drew from wells of strength that she never knew she had.

Through tears Tiffanie admits, “There were times when she asked me to let her go, and I couldn’t. I'm glad I didn't.”

McLaughlin sees Elisabeth’s graduation as a collective victory for all the staff at Driscoll and all the families who depend on them. “In working together we can accomplish anything,” she says. “We can give these children the hope they need.”

“It means hope, and it means endurance.”

Driscoll is like family to patients

Elisabeth is so well loved at Driscoll that her physicians argue over who is her favorite. Jon Roberts, MD, director of pulmonology, jokes that he knows he’s second best to nephrologist Dr. Al-Akash, but he hasn’t given up on trying to tip the balance in his favor.

Dr. Al-Akash openly admits that he loves his long-time patient. He’s seen her hundreds of times since she was three and attended every school play she’s ever been in as well. That genuine closeness to Elisabeth is not an anomaly.

“You get to know kids even better than your own kids because sometimes they confide in you in ways you don’t even get from your own children. Seeing them develop and hit milestones over the years, that’s like seeing your child develop. It’s a unique relationship we’re fortunate to be a part of, and we do feel like we’re family,” says Dr. Al-Akash.

“It’s never just a job. These are our children,” says McLaughlin.

Seeing Elisabeth graduate was especially rewarding for Dr. Al-Akash, who treated Elisabeth from the time when her favorite word was “no” to today when she was mature enough to recognize the role the hospital has played in her life’s trajectory. “I have so many unpleasant memories of seeing her struggles, but it’s so rewarding to see her come out on top, of seeing her assertively make her way with determination to beat all the odds.”

That sentiment resonates with all of Elisabeth’s care team over the years. Tiffanie says, “When we were doing the walk through the hospital for the photos, I saw several staff members with tears in their eyes, who remember the little 6-lb. baby that no one thought would make it. To see Elisabeth in a cap and gown must have been mind-blowing for them.”

Dr. Roberts was committed to keeping Elisabeth’s asthma in check from the moment he met her. “I think that my contribution to taking care of her asthma is a small part, but I figured she had enough grief and stress with her kidney diagnosis that I might as well keep her lung disease under good control.”

Looking back on his years treating Elisabeth, Dr. Roberts says, “This journey for Elisabeth has really been about overcoming all of the down times, the hospitalizations, the missed time with family, school, friends and really coming out on top, despite everything, despite everything that she's been through, despite what the world has thrown at her, she threw it right back at the world.”

Having her photo shoot at the hospital was also a special moment of thanks for the Driscoll team, who treat around 150,000 pediatric patients each year. Dr. Roberts says, “It’s rare for us to be thanked like that. When you have a patient that shows that appreciation, it’s a wonderful thing.”

To Elisabeth, her choice was obvious. “They saved my life so many times. They’re my biggest supporters in the world.”

Marching forward toward her future

Today, Elisabeth’s health is more stable. She checks in every 6-8 weeks. At 15 years, she has one of the longest transplanted kidneys that is still functioning.

Elisabeth takes a list of medications that is at least four pages long. “Watching her take her medications is something. She pulls up her syringes and little cups of pills and she just takes them in seconds. Adults struggle with that,” says Dr. Al-Akash. “She wasn’t a perfect patient, but every patient tries to do their best. She was the best patient she could be. Overall, she’s an impressive patient and takes good care of herself.“

Dr. Al-Akash was even more impressed with his long-time patient when she let him know she’d be including him in her graduation photo shoot. “To do a whole production in the hospital with such reflection on your journey and such appreciation and such ownership of that was just amazing.”

“Her journey here and her challenges molded her into the person she is now. She’s got a little bit of everything – a little bit of defiance, compliance, decisiveness.”

He is careful to point out that Elisabeth’s success is as much thanks to Driscoll’s care team as it is to her mother’s dedication. “I think it’s important to point out that without her mom and family she wouldn’t be the person she is today.”

Heading to college is the beginning of a journey of leaving the safety net of their parents home to go out on their own for the first time. For Elisabeth, her health has meant a lifetime of navigating through challenges.

Her care team is confident she’ll succeed in any endeavor she decides. She’s armed with levels of resilience and fortitude most adults never realize.

McLaughlin says, “She shouldn’t even be here today, but through her determination she has overcome. She has learned to pivot and doing that is going to take her far in life.”

As for Tiffanie, she exudes pride in seeing Elisabeth graduate and begin junior college in the fall.

“I don't think there's really words that can describe how proud I am of her. She's lived a really hard life medically and she has struggled through school and struggled through her health. And no matter what, she keeps coming back fighting.”

Elisabeth plans to attend Del Mar College in the fall and then go on to pursue a bachelor of arts in forensic science. She’ll stick around Driscoll until she ages out at 21. She’ll remain part of the Driscoll family forever.

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