Healing ‘the sickest a child can ever be’

How Emily Rogers, the wonder girl of B.C. Children's Hospital, overcame being born with seven organs outside her body

Emily Rogers

I love you forever…

It’s not hard to mistake Emily Rogers for someone younger than her 17 years.

Slender and petite, with wide blue eyes and a sweet, easy smile, she frequently looks to her mother, Marie, for guidance and support while talking about herself to a stranger. She speaks quickly, with a practiced politeness that blossoms into genuine warmth and laughter as her comfort level grows.

The affection between mother and daughter is obvious, unforced.

It is hard to imagine the first moments of this precious bond: the hearty, full-throated, prayed-for wail as daughter emerged from mother via a gap carved by a surgeon’s knife; the desperate “I love you Emily” that burst from Marie Rogers’ throat, an exultant psalm to a moment she had dared not ever allow herself to anticipate.

That moment is branded into Marie’s memory, recognized right then and there as the only sensation mother and daughter might ever share.

Marie was neither allowed to see her daughter, nor touch her as a surgical team of 21 immediately sprang into action: half initiating an operation to close the gaping opening in Marie’s abdomen and save her uterus; the other half spiriting Emily off for prodding and testing in preparation for an even more brutal crucible.

When mother and daughter next met it was nearly five hours later.

Emily was flat on her back in an incubator, her stomach open from breastbone to pelvis, a frightening oval her mother described as similar in shape and scope to the light-coloured patch on a teddy bear’s tummy.

Piled outside that gap rested seven of what most of us refer to as our internal organs — intestines, liver, stomach, fully one-third of Emily’s tiny body exposed to the world in a way the genetic code never intended.

Emily was not supposed to have survived in the womb long enough to be born. There were no guarantees she was going to survive the birthing process. But her toughest test was still to come, hours of painful, painstaking surgeries as likely to end her breviloquent existence as they were to extend it.

The baby girl had no idea of any of these realities, but in that moment they were her mother’s entire world.

Unable to snuggle or feed her newborn, Marie contented herself with caressing her cheek and rubbing her tiny foot. They were given eight minutes together, a moment and a lifetime.

Marie read Emily the classic Robert Munsch children’s story Love You Forever.

And then the doctors took her away.

 

I like you for always…

At one point in our existence each of us was just like an infant Emily Rogers. During early gestation our internal organs form in an umbilical sac outside our abdominal cavity.

The difference is that for most of us a genetic switch trips at around the 10-week mark. It moves the organs inside our body and fuses them to the abdominal wall.

But once in every 3,000 to 10,000 pregnancies, for reasons not fully understood, that switch fails to properly fire and some organs or parts of organs remain outside as the fetus grows. This condition is called an omphalocele.

Typically discovered during a routine ultrasound late in the first or early in the second trimester, it is a serious condition. Some studies indicate nearly half of fetal diagnoses end in stillbirth or decisions to terminate the pregnancy (the latter at 29 to 51 per cent, according to a report out of Toronto’s Hospital for Sick Children). One Chinese study following a decade’s worth of diagnosed cases reported 52 per cent either died in the womb or failed to survive more than a week after birth. The odds of survival worsened depending on the size of the omphalocele and the presence of any associated abnormalities.

Babies who survive until birth face the likelihood of surgery or multiple surgeries to correct the condition. Depending on the severity of the omphalocele, full treatment may take several years, with the possibility of slowed motor development, asthma, reflux issues and persistent abdominal pain during childhood, along with an elevated risk of respiratory failure, infection, and nutrition-related liver failure during the first few weeks after birth.

The risks are exacerbated by as many as 5,000 other defects commonly associated with omphaloceles, ranging from cosmetic to life-threatening. These include congenital heart issues and underdeveloped lungs. In cases of giant omphaloceles — the most serious cases, where the defect exceeds five centimetres and the liver is exposed — the mortality rate is about one in four when there no other complications present. When other complications exist, it skyrockets to about 80 per cent.

Eimly and MarieEmily Rogers had what is termed a gross omphalocele, the largest her surgical team had ever dealt with. Her mother described the ultrasound picture as “it looked like the baby had swallowed a beach ball.”

Even as her child developed carrying this dangerous defect, Marie Rogers was carrying some difficult baggage of her own; a son named David had died in the womb seven months into her first pregnancy, about a year prior to Emily’s conception.

The doctors ruled it as just one of those things and cleared the then-Langley resident medically for another pregnancy. Marie was committed. This time she was going to do everything right: eat, sleep, move, breathe. She was in control. Nothing bad was going to happen to this child.

Her doctor ordered an ultrasound scheduled for ten or 11 weeks in, just to build her confidence and reassure her everything was going to be fine.

He called later that night to say he was coming over.

No, Marie replied, I’ll make an appointment to come see you in your office next week.

No, he repeated, I’m coming right over.

She greeted him expecting the worst. What she heard was bad, but it was not the worst. It was not David. This baby was still alive.

Conventional medical wisdom was to recommend termination of the pregnancy. Marie would hear none of that.

She met with a surgeon and promptly dismissed him. His professional skepticism about the hard path necessary to turn this troubled pregnancy into a healthy, happy mother and child was not what she wanted, or needed. A second consult with a different surgeon ended with the same result.

And then she met Dr. Geoffrey Blair. Now a senior paediatric surgeon at B.C. Children’s Hospital, Dr. Blair had only dealt with a handful of serious omphaloceles at the time and not all of them had happy endings. But there was something in his calm manner and quiet determination that inspired trust. This man, Marie decided, would do whatever he could to save her daughter.

“We created a bond and this man was wonderful,” she said.

Despite her shocking news, Marie continued in her job at a Lower Mainland financial institution. It was an attempt to focus, but her kidneys started to fail. To protect her health, she was ordered to stop working.

As her pregnancy progressed, her need for control expanded along with her stomach. She bribed Dr. Blair with homemade peanut brittle, chocolate chip cookies and chilli and inundated him with questions and information. Every nuance of the medical plan was up for discussion, every staff member subject to scrutiny. She was terrified that some detail might get overlooked, or that someone on the medical team may not be as dedicated to the survival of her child as she was.

She even took the step of bringing in an ethicist and got everyone on the hospital floor to sign off on their commitment to keeping Emily alive.

“It was extreme, absolutely,” she said. “It was a controlling thing, but I had to let them know this child was loved.”

Her fear skyrocketed late in her pregnancy when Dr. Blair had to make a trip to San Francisco.

While he was away, a scan showed trouble in the womb.

“I could see she had no amniotic fluid. I started bawling. It was happening again.”

Marie was admitted to hospital for a weekend of watchful care and frightened prayer, as she awaited the return of the man to whom she had entrusted the life of her unborn child.

“Dr. Blair said you just have to give your child a strong will, so that’s what I had to do, give my child a will of steel,” she said. “He said ‘this is the sickest a child can ever be. If a child survives this, she will never get sick.’”

On Oct. 18, 1998, Dr. Blair returned. The next day, a few weeks ahead of schedule, Emily Rogers arrived.

 

As long as I’m living…

An odd thing happens to your abdominal cavity when your guts form outside your body: without the internal pressure, the cavity doesn’t grow.

Emily Rogers came into this world with a healthy heart and lungs and an absence of any of the complications commonly associated with omphaloceles. But her liver, small and large intestines and four other organs were separated from the ravages of this world by just a thin, translucent umbilical membrane.

The doctors had about one week to get her organs back into her body before they started to fail. And, to use the crudest of analogies, in order to accomplish that they had to perform the medical equivalent of a farmer forcing 50 pounds of grain into a 10-pound bag. With her delicate heart, lungs and kidneys already filling an unnaturally small space, the surgical team had to exercise an extraordinary mix of force and restraint to safely create the necessary room.

It was 10 hours after their initial eight-minute introduction when Marie next saw Emily. Again flat on her back in an incubator, she had just survived 8 1/2 hours of surgery. Two-dozen tubes and wires snaked from a body that weighed less than five pounds. Rising from her middle now, holding her innards, was a crude, medically crafted silo suspended amongst the heat lamps from the incubator’s ceiling.

All that medical effort. All that prayer. All that time. And the surgeons had managed to squeeze just two of the seven exposed organs into Emily’s body.

But as the hours turned into days, a steady stream of doctors and nurses passed through the ward, wide-eyed, amazed and occasionally emotional as the complex operation continued and a hopeful buzz grew.

Emily had to be continuously medicated for the pain, intubated to support her breathing and fed intravenously. Her stomach had to remain completely empty.

But after eight surgeries in six days, the last organ slipped into place. Her skin from her back and sides was stretched taut across the opening and stapled together.

An exhausted Dr. Blair came to Marie and her husband and delivered the words they feared they would never hear: ‘she’s going to make it.’

“He said ‘she’s a strong girl, she never failed,’” Marie said. “He had the biggest smile on his face. I said ‘thank you for believing in us,’ and I went straight to church.”

EmilyToday, Emily Rogers is about to enter Grade 12 at Frances Kelsey Secondary School in Mill Bay.

She loves horses, photography, the fine arts, and holds down part-time jobs in a medical office and a retail store in downtown Duncan.

Her preschool years were the toughest as her body struggled to catch up and overcome its early trauma. She didn’t crawl until she was 2 1/2 due to her lack of stomach muscle and weighed only 10 pounds. Her mother gorged her with platters of protein to compensate and she was able to begin kindergarten on time. At age six she even got to pick out her own belly button.

Over the years, she has undergone 17 surgeries — one for each year of her young life. But she considers that chapter now over. The chronic pain brought on by growth and any adolescent anguish tied to emotional sensitivity about her scarring are fading relics of her past. She deals with the remnants through meditation and yoga.

“I’m doing real good right now. As I get older it’s kind of eased out,” she said. “Right now is the best I’ve been.”

The regular visits with Dr. Blair and his successor in her care, Dr. Jane Hailey, have dwindled.

Dr. Blair declined an interview request for this story for professional reasons, but made it clear what he thinks of Emily.

“I can say that Emily is a wonderful young lady and I have great respect for her and her family,” he said.

Emily considers both doctors to be friends and confidants and fully expects each to be there on her eventual wedding day.

Her organs don’t rest in the expected places, and her lack of a regular stomach wall means contact sports are out. She has a hearing impairment tied to a medication used to keep her alive during her first week of life.

But beyond that, her condition no longer has any significant impact on her day-to-day life, save the fact that she has been blessed with the enviable gift of being able to pack away shovelfuls of the tastiest food and never worry about gaining a pound. Studies show she should expect an adult quality of life similar to that of the general population.

Senior high is about transition for all teens, but for Emily it has been even more pronounced — a new home, new friends, new opportunities and some separation from the medical condition that has consumed much of her life so far. She considers it an important factor in moulding the person she has become, but refuses to let it define who she is. Too much world awaits to see and experience.

“I’ll always remember it, but I’m not going to hang on to it,” she said.

She has a 12-year-old sister named Allison, a dog named Romeo, and an uplifting crew of new friends developed during her first year on Vancouver Island. Much of her free time is spent exploring the possibilities of her new home.

She dreams of someday making a trip to Africa. For some time, her career goals have been aimed at teaching, working with kids, or in a similar, socially conscious vocation, but her past recently helped crystallize her potential future.

For all her life, Emily has volunteered for B.C. Children’s Hospital, often as a poster child, or the “Wonder Girl” spokesperson for various fundraising campaigns. While doing a radio spot earlier this year, she had an epiphany.

“It hit me that I’d been around Children’s Hospital my whole life,” she said. “I want to be a guidance counsellor, to be there for families, emotionally and physically.

“I love sharing my story, because I’ve been told my story is remarkable. For families and children out there who are born with a disability or a defect, I can be someone to look to and know that you are not the only one.”

After holding on so tightly during Emily’s early years, it will be difficult for Marie to let go. But what makes it easier is seeing what her daughter has become.

“She is a beautiful girl who has a beautiful heart,” she said.

 

…my baby you will be.

During the early struggles of her birth, operation and recovery, Emily became something of a minor celebrity: an amazing story of hope and recovery that was picked up by some media outlets and particularly Lower Mainland schools.

The Rogers suddenly found themselves flooded with cards from school kids saying “Baby Emily, we love you.” Prayers and support were coming not just from their own Catholic community, but from secular schools and people from many different faiths.

After a month of treatment, Baby Emily was released from the hospital. Not long after, her family bundled her up to visit those classrooms, to show those kids that their voices had been heard and that what they did mattered.

“We took her around at a couple months old, so they could see the impact of their prayers, to say we appreciated that you took the time to show you cared,” Marie said. “You always hope for the best and you want to be part of it.”

“Emily did way better than I ever hoped for.

“You give back. You never forget.”

(Verses from Love You Forever, by Robert Munsch)

Follow me on Twitter @JohnMcKinleyBP

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