A girl named Charlotte: Hope for families of children with complex medical issues

A Doylestown woman and her husband received shattering news in July of 2017 at the 20-week ultrasound of their unborn child.

Emily and Dan Whiting were looking forward to a happy occasion, learning from an ultrasound whether their child would be a boy or a girl during what they thought would be a routine appointment.

They found out they were going to have a girl, but their moment of elation was short-lived. They didn't foresee hearing she had multiple medical issues, literally from head to toe, involving multiple organs. Nor did they anticipate asking  the question, if she survived delivery, what would her prognosis be?

"Will we have two minutes, two days, two years, or 20 years?" Whiting recalled asking, discovering the answers changed "minute by minute."

She could not have envisioned God leading her on a path to becoming a future advocate, not just for Charlotte, but for other struggling families, through a book, a podcast, and a nonprofit foundation.

Who decides on 'quality of life'?

Terminating the pregnancy "was never an option for us," Whiting said. "My husband and I were very blessed to really know and value the dignity of life. It wasn't up to us to end it," she said. "Do we even know what quality of life means? Who are we to decide?"

However, she clarified, she gained an "immense amount of empathy and love for parents who find themselves in a similar position and don't feel confident to keep the pregnancy. I can see what a difficult position that has to be."She does not support it, "but I understand how it is a thing," she said.

It's why she has made it her goal to come alongside other families whose children are combating complex medical conditions and "help them feel equipped that they can do it."

While doctors care for the children, "there is a huge gap for taking care of the parents."

Many tests and evaluations later, Charlotte's specific condition was just recently specifically diagnosed using the Whole Genome Sequence. Hers is one of only nine other documented cases worldwide of MED12 Hardikar Syndrome.

An ultra-rare disorder, it encompasses cleft lip and pallet, bile duct abnormalities, liver disease, intestinal malrotation, pigmentation of the retina, narrowing of the aorta and vascular anomalies, kidney and bladder irregularities, and more.

Whiting's book, "She is Charlotte, A Mother's Physical, Emotional and Spiritual Journey with Her Child With Medical Complexities," published in January, narrates the beginning of their medical journey, encompassing the remainder of Whiting's pregnancy through Charlotte's birth in November 2017 and the nearly three months she spent in Cleveland Clinic's neonatal intensive care unit.

Whiting's book chronicles the unrelenting fatigue and overwhelming emotions she and her husband experienced as Charlotte's condition fluctuated between medical milestones and defeating setbacks.

Charlotte has undergone 17 medical procedures

Charlotte is now 5 years old and has undergone 17 procedures; the most recent was major abdominal surgery.She most likely has 5-10 to go before she turns 20, Whiting said.

While handling Charlotte's daily health concerns with a care team collaboration among more than 20 health care professionals and three hospital systems, Whiting remains well aware of the impact Charlotte's medical issues have on her siblings.

While 2-year-old Eden is still too young to understand, 4-year-old Liam tries to comfort Charlotte when she is hurting.

Whiting strives to help him verbalize his experiences so that "we are not burying the trauma. We talk about it very openly.

"The empathy they have at such a young age is astounding," she said.

Emily's and Dan's decision to have more children was another part of their journey.

"We walked to the edge of life and back. We almost lost (Charlotte). We've pondered the loss of her. We've prepared our hearts for the loss of her," along with the accompanying suffering.

But through it all, she said, "It set our hearts on fire for how beautiful and how fragile life is, how valuable each life is."

Whiting said her "lowest of lows" came after Charlotte's fourth or fifth surgery in her sixth week of life "when we almost lost her."

She asked, "God, where are you in all of this?"

At that point, Whiting recognized, "Maybe healing is not going to happen here. It loosened my death grip on trying to control the situation."

Instead, she resolved to "do the best we can and accept all help offered."

Facing a lifetime of challenges

"We're going to be navigating this for the rest of our lives," she said.

There's no negativity in Whiting's statement.

Her face radiates with joy as she tells her family's story and her children traipse with toys back and forth between their playroom and the comfort of Whiting's lap and embrace.

"It is definitely my life's work," she said of the career path upon which she has embarked, meshing her personal and professional life.

"I enjoy it. I'm where I need to be," she said.

Having earned an agricultural communications degree at the Ohio State University, she can see how her background experience "led up perfectly to what I'm doing now."

Her interests in marketing and business were simply "rerouted."

As co-founder and Hope Director of Charlotte's Hope Foundation, Inc. and the co-host of the podcast Empowered by Hope, Whiting also uses social media and speaking engagements to help other parents and caregivers navigate the territory she has been traversing.

She recognizes parents' need to understand terminology used in order to interact with medical personnel and helping families realize it's to be expected they will "crash and burn" in the weeks following a surgery; it's part of the healing process.

"I'm walking the walk," Whiting said. "I'm seeing the need because I have that need."

While she strives to support others in their struggles, it's often Charlotte herself who uplifts Whiting. She has assured Whiting at the end of a difficult day, "I'll be better tomorrow, Mama."

Charlotte lives life fully, her mother said, an outcome Whiting desires for others as well.

'Everybody has gone through something'

She has been told parents of children with medical problems aren't the only ones who have benefited from Charlotte's story, but also others facing unforeseen circumstances life has thrown at them.

"Everybody has something. Everybody has gone through something. With the challenges come great blessings," she said. "You don't get one without the other.

"The mountains (God) is moving with Charlotte's Foundation is amazing," she said, outlining projects such as putting together an international conference with different specialists and figuring out how to spearhead a "medical home," intertwining into a big picture the multiple specialties families face in their child's health care.

Whiting looks forward to a sequel to her book and reaching other milestones.

"This journey set us on fire with the love for life," she said.

This article originally appeared on The Daily Record: Mother of girl with medical issues writes book to help others