Big Sister Gives Back to Honor CHOC Children’s

Lily’s big sister, Makenna loved her before she was even born. She was actually the one who chose Lily’s name. Their bond only grew stronger when Lily was born with a rare chromosomal abnormality requiring specialized treatment and extra help at home.

Lily and Makenna
Lily and Makenna

“Even though Lily is different than Makenna and her brother, Ethan, they just see her as their sister,” says mom, Danielle. “They’ve helped Lily learn sign language and practice pronouncing words.”

Lily’s entire family has been involved in her care from day one. Makenna, age 11, would regularly tag along to Lily’s physical and occupational therapy sessions. She was keen to learn how she could help take care of her sister. She watched closely as physical therapist Cathy Lopez taught Lily how to move her body, and occupational therapist Lauren Newhouse taught her how to eat solid food (her favorite is avocado).

Seeing the way CHOC’s rehabilitation services team cared for Lily and the progress she made in therapy inspired Makenna to give back.

Makenna’s fundraiser

When Makenna’s school hosted a fair for students to showcase causes important to them, she chose to honor CHOC. She and a few friends watched YouTube videos to learn origami and created dozens of animal and emoji-themed bookmarks. She quickly sold out of them and donated the proceeds to the rehabilitation department at CHOC.

Lily backpack

“Raising money for CHOC is the least I can do to thank them for taking such good care of my sister,” Makenna says. “Whenever we are there for an appointment, all the doctors, nurses, therapists and security guards are so nice to us.”

Organizing this fundraiser has inspired Makenna to continue her philanthropic streak.

“It was feels good to do it and it was so easy. It makes me want to do more to raise more money for CHOC,” she says.

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Lily and Makenna present a Makenna’s fundraiser proceeds to physical therapist Cathy Lopez.

Lily’s diagnosis and early days

When Danielle and her husband, David, found out they were expecting their third child, they were thrilled. A few months into Danielle’s pregnancy, a blood test showed that Lily had Turner Syndrome, a genetic condition affecting a female’s growth and fertility. That turned out to be a false positive, but a follow-up amniocentesis correctly diagnosed Lily with Mosaic Trisomy 12, a rare chromosomal abnormality about which not much is known.

Lily was born full-term via C-section at a local hospital. Immediately after birth she had trouble breathing and turned blue, and she was quickly whisked away to that hospital’s neonatal intensive care unit (NICU).

Lily needed a ventilator to help her breathe. She also required use of a CPAP, also known as continuous positive airway pressure, which helped keep her airway open. Danielle pumped her breastmilk so Lily’s care team could nourish her through a feeding tube.

Just outside the hospital, CHOC geneticist Dr. Neda Zadeh was starting to make her way home for the day when she heard about Lily’s condition.

“Dr. Zadeh was on her way out, but she turned around and came back to the hospital to run more tests and get a better idea of what was affecting her,” Danielle recalls. “Dr. Zadeh is amazing.”

In the first few days of Lily’s life, her parents weren’t sure if she would make it or not. When she was 3 days old, she was transferred to CHOC’s NICU for a higher level of care.

Lily spent the next 24 days in the NICU. When she learned how to breathe and eat on her own, she was ready to go home for the first time.

While the family spent much of their daughter’s first month in the hospital, NICU nurses made sure the family didn’t miss out on their first holiday together — Father’s Day. With her nurses’ help, Lily created a special Father’s Day craft for David using her footprints.

These days, Lily sees a mighty brigade of pediatric specialists at CHOC on a regular basis. Although not much is known about her Mosaic Trisomy 12, her care team remains fully committed to ensuring she is safe and healthy. In addition to Dr. Zadeh, Lily is under the care of neurosurgeon Dr. William Loudon, endocrinologist Dr. Timothy Flannery, and otolaryngologist Dr. Nguyen Pham. She also sees a neuro-ophthalmologist at UC Irvine.

Danielle is proud of the progress Lily has made during therapy at CHOC and seeing how that progress sparked Makenna’s giving spirit makes her proud as well.

family

“Makenna probably doesn’t realize this, but Cathy and Lauren at CHOC really cared for our entire family, not just Lily,” Danielle says. “The entire rehabilitation team at CHOC was incredibly supportive to our entire family. They were the weekly and sometimes daily reminders that we could do it. They impacted our entire family in a way that words simply cannot express. When we look back on Lily’s first years, they are in our memories and always will be!”

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Two Premature Babies, Two NICU Journeys: Rosie’s Story

Serving patients and families of Pediatric & Adult Medicine (PAM), a part of the CHOC Children’s Primary Care Network, for nearly 25 years would give anyone a unique perspective of CHOC.

But for Rosie Echevarria, a front office administrator, that understanding goes even deeper. After all, both of her children required an extra level of care in CHOC’s neonatal intensive care unit (NICU) when they were born decades ago.

“When I joined PAM, I didn’t have children at the time, but I knew that when I eventually started having kids, that they would be born at St. Joseph Hospital in Orange,” Rosie says. “That way, they could be right across the street from NICU if anything were wrong and they needed extra care. A lot of our patients had been treated at CHOC, and I just sort of knew that if my future babies went to CHOC, that everything would be OK.”

Rosie had no way of knowing that she would indeed become a NICU mom.

Clarissa, Rosie’s eldest child, was born at St. Joseph via C-section at 29 weeks gestation. Rosie stayed behind to recover from surgery while Clarissa was quickly transported to CHOC’s NICU. Facing a premature birth and the unexpected hospitalization of her first baby left Rosie feeling scared and worried.

clarissa-in-nicu

“My husband stayed by our daughter’s side, and when they got to the NICU, the doctors explained to him everything that was happening to our daughter,” Rosie says.

Rosie was able to join her daughter in the NICU the next day.

“Once I was transported up to the NICU in my wheelchair, the nurses reassured me that they would take care of my baby night and day, and that I could visit anytime,” Rosie says. “They explained everything that would happen, and what all the monitors she was hooked up to were for—I was included in every decision and considered part of the team.”

Rosie fondly recalls the personal way that Clarissa’s team of NICU nurses cared for her daughter 20 years ago.

“Because she was so little, she couldn’t really open her eyes—so her nurses made her a little eye mask with eyelashes and eyes,” she says. “It was so cute!”

Clarissa spent almost three months in the NICU.

rosie-clarissa-in-nicu

“The care she received was absolutely the best, from day one to release date,” Rosie recalls. “The doctors were wonderful as well. I think my daughter had the very best doctor because I would get a call every single time anything would happen, or if I needed to get to the hospital right away.”

During that time, she needed two blood transfusions. Before she could be discharged, CHOC nurses trained her parents on how to care for her using equipment she took home, including an oxygen tank and an apnea machine.

“They explained everything to me and reassured me that there was no need to be afraid—that Clarissa wasn’t in danger,” Rosie says.

A few years later, her son, David, was born at 32 weeks gestation at St. Joseph Hospital, and was immediately transported to CHOC’s NICU. Since Rosie already had a little one at home, she couldn’t spend as much time with her son in the NICU as she had spent when she was a first-time parent.

david-in-nicu

“I was very sure the nurses would take really good care of him because I had already experienced it the first time,” she says. “I was never in fear that my child wasn’t taken care because I know the level of care that the CHOC NICU provides.”

David stayed in the NICU for two weeks before he was ready to go home — although his mom recalls that at that time he was never quite ready to wake up.

“He loved to sleep! He would never wake up. So, when we were getting discharged, we went home with a monitor and caffeine that staff showed me how to use and administer.”

clarissa-graduation
Today, Clarissa is a student at UC Irvine.

These days, Clarissa is studying forensics at UC Irvine.  She loves to travel and go to concerts with her mom. Clarissa lives with cerebral palsy and receives care from Dr. Samuel Rosenfeld, a pediatric orthopaedic surgeon at CHOC. David is a high school student who loves illustration and dreams of becoming an art teacher.

david-school
David is now a high school student who dreams of becoming an art teacher.

Because of their prematurity, both had eye surgery when they were younger. Both sister and brother have regular eye exams with Dr. David Sami, a pediatric ophthalmologist at CHOC.

“The three words that come to mind when I think of CHOC are: caring, loving and reassurance,” Rosie says. “Doctors and nurses provide such excellent care and treat their patients as if they were their own children. As a first-time mom, I didn’t know what to expect, but I was never in fear. CHOC made me feel like everything was going to be OK.”

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CHOC Family Honors their Little Hero Through CHOC Walk

For more than a decade, the Gomez family has held a special place in their hearts for the CHOC Walk in the Park. The beloved event is a particularly special time every year to honor their son, Robby Gomez.

Robby was born in 2001 at a local hospital with a rare form of laryngomalacia, a congenital condition where floppy tissue above the vocal cords falls into the airway opening when an infant breathes in, causing restriction of the airway.

Upon learning about his condition, their baby boy was quickly rushed to CHOC Children’s, where he was admitted to the neonatal intensive care unit (NICU), and underwent several surgeries, including a tracheotomy, a procedure that opens up the windpipe (trachea) to allow a breathing tube to be inserted to provide an airway.

After a few weeks in the NICU, Robby was finally released to go home. He would occasionally go back to CHOC for care, but otherwise Robby led a typical life with little to no restrictions. As he grew, he was an active, vivacious little boy who participated in sports, played and jumped around like most children.

robby-batman-gomez
Robby “Batman” Gomez

Tragically in 2006, at age 5, Robby died unexpectedly in his sleep from complications of his condition.

“Robby was an amazing and loving boy, whose strength and positive energy was infectious,” says Robby’s dad, Marty.

Marty and his wife, Julie, knew they had to find a way to give back to CHOC, since CHOC had been there for Robby and their family every step of the way.

“We’ll always be grateful to CHOC. The level of care and compassion that we received was extraordinary and we’re so thankful for the five years CHOC gave us with our son,” Julie says.

When Julie heard about the CHOC Walk, she knew she had to get involved. She formed team Robby “Batman” Gomez  in honor of Robby, whose favorite super hero was Batman. The team started off with just a few members – Julie, who is team captain, her mom, and two of Julie’s best friends.

Today, Team Robby “Batman” Gomez has around 30 members, and is one of the top CHOC Walk teams, having raised over $100,000 benefiting CHOC. This year alone, the team has already raised more than $15,000.

“We’re happy to do anything we can for CHOC. The CHOC Walk is such a special, unique opportunity that touches so many lives in our community. You can see the overwhelming compassion of everyone there, whether they are honoring a current patient or a child who has passed on,” Julie explains.

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Robby “Batman” Gomez

Julie and her friends and family have also held several community fundraisers benefitting CHOC over the years, including car washes, restaurant give backs, and most recently a golf tournament.

The Gomez family, including Robby’s brother and sister, Matthew and Emily, and their friends will always enjoy sharing their little “hero’s” story, especially around CHOC Walk time.

“Robby is our angel. He’s our guiding light, a beacon of goodness, and has forever left an impact on the lives he touched,” Julie says.

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An Opportunity to Touch Lives Through Knowledge, Compassion

Maureen Garrett, a charge nurse in the neonatal intensive care unit (NICU) at CHOC Children’s at Mission Hospital, believes she gains as much from her patients and families as they do from her.

“I have learned about courage, strength, resilience, love and joy by sharing in their hospital experience,” she says. “I love seeing a family grow from the overwhelming fear they first experience with an unexpected, premature birth to a confident, competent mother and father taking their newborn home.”

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Maureen, a registered nurse in the neonatal intensive care unit at CHOC Mission.

As CHOC Mission celebrates its 25th anniversary this month, Maureen is among a special group of employees who have been with the hospital since day one. She joined the CHOC Children’s health system in 1991, when she was hired to help open CHOC Mission.

Opened in 1993, the children’s hospital operates on the fifth floor of Mission Hospital in Mission Viejo. The 54-bed hospital is the only dedicated facility for pediatrics in south Orange County, surrounding coastal areas and north San Diego County.

Through the years, Maureen has served in several capacities at CHOC Mission and has witnessed much evolution inside the hospital – most notably, she says, the hospital’s family – centered-care philosophy.

“The most significant change has been the dramatic shift to family-centered care where families really are viewed as part of the team, and hospital operations are designed to empower parents and facilitate their involvement in their child’s hospitalization,” Maureen says.

Maureen initially pursued a career in health care because she wanted to help others, and create a work-family balance.

“I love the opportunity to touch people’s lives through both knowledge and compassion,” she says. “In nursing, there are so many opportunities and so much flexibility. I knew it would be the kind of career that would allow me to be a parent but still allow me to grow professionally and be challenged always.”

Maureen’s enthusiasm for CHOC Mission extends far beyond mere professional pride: Her own two daughters received care in the hospital’s NICU, her own unit.

Shortly after the hospital’s founding, Maureen’s eldest daughter was born in 1994 at 32 weeks gestation and spent about a month in the NICU.

Maureen’s second daughter, just like her older sister six years before her, also arrived early, at 32 weeks gestation. She stayed in the NICU for about three weeks.

“I had trust in everybody here,” Maureen said. “I knew it was a good staff. If your baby ended up the NICU, where would you want them? I’d want her here. I had an intimate relationship with the people caring for them because I worked there.”

The experience of being a parent in the NICU influenced Maureen’s work moving forward.

“You think when you work in any area that you have a decent perspective, but once you walk it yourself, it does make you more sensitive,” she says.

Maureen knows firsthand how important having a nearby high-quality children’s hospital is for the community. And while CHOC Mission and its staff are celebrating a quarter century of serving south Orange County and beyond, no one is resting on their laurels.

“I hope that CHOC Mission will continue to grow in size and services as the community around it continues to grow,” she says. “I hope we will have a more active role in health and wellness promotion in addition to providing services for those affected by illness.”

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Keeping it in the Family: Why a Disneyland Resort Cast Member Joined the CHOC Walk

For Andrew Geis, participating in the annual CHOC Walk in the Park is only natural.

After all, Andrew credits CHOC Children’s with saving his daughter’s life, and the annual fundraiser takes place throughout his office – the Disneyland Resort.

Cumulatively, the Disneyland Resort has been CHOC’s largest corporate donor over the past 25 years, and the annual CHOC Walk in the Park is the hospital’s largest fundraiser, raising more than $32 million to date.

“I feel a sense of pride that an organization I’ve been with for 17 years has such a strong relationship with CHOC, which has done so much for my family,” says Andrew, who is part of the Disneyland Resort’s catering and convention services team. “The CHOC Walk is a small way that we give back and recognize the incredible care that we had at CHOC.”

Many Disneyland Resort cast members who have been personally impacted by CHOC participate every year. Last year, the Disney VoluntEARS walk team raised more than $90,000 for the hospital.

The Geis family’s relationship with CHOC began even before baby Sawyer was born. Imaging conducted while she was in utero revealed two possible heart defects, the severity of which wouldn’t be known until she was born.

The family started planning, and immediately after her birth, Sawyer was transferred to CHOC’s neonatal intensive care unit. There, further testing revealed a constricted aorta; an atrial septal defect (ASD), or a hole between the top chambers of her heart; and a ventricular septal defect (VSD), or a hole between the heart’s lower chambers.

Geis parents_at CHOC
Andrew and his wife Michelle with their daughter Sawyer shortly after she was born.

Sawyer would need surgery – and she’d need it quickly, specialists told Andrew.

“I don’t think you’re actually ever prepared to hear that when your child is less than 24 hours old,” he says. “It was like a kick to the heart.”

Within days, Sawyer underwent surgery to repair the defects. Dr. Richard Gates, co-medical director of the CHOC Children’s Heart Institute, and Dr. Joanne Starr, medical director of cardiothoracic surgery at CHOC, fixed the constriction in her aorta, partially closed the ASD, and placed a band around Sawyer’s pulmonary artery to equalize pressure in the two sides of her heart and force the blood to flow to the lower half of the body.

While the surgery was a success, recovery in the cardiovascular intensive care unit was tough. There, Sawyer had an irregular heartbeat, which required the activation of an external pacemaker. Then, she also developed a blood clot. That same day, Sawyer experienced a three-minute seizure.

The clot and seizures were successfully mitigated, and a CT scan following the seizure showed no signs of a stroke or blain bleed. But Sawyer remained in the CVICU healing, growing and learning to eat on her own for several weeks.

During her stay, Andrew and his wife, Michelle, took shifts, alternating who stayed with Sawyer and who went home to their 5-year-old daughter, Parker. When Parker came to the hospital to visit, CHOC staff made a point to connect with her and ensure her needs were also met, Andrew recalls.

“My wife and I felt very strongly that it wasn’t only about the care Sawyer received, but that the entire family was taken care of,” he says. “That level of compassion and total family care was evident in all interactions with team members of CHOC.”

And finally, after 32 days, a 1-month old Sawyer headed home to join her family.

Sawyer headed home from CHOC
After spending just over the first month of her life at CHOC Children’s, Sawyer was finally able to go home.

During their time at CHOC Children’s Hospital, the Geis family became increasingly aware of the long relationship between the heath system and Disney, from Walt Disney’s early fundraising efforts before the hospital was built to the Disneyland Resort’s $5 million gift toward construction of the new Bill Holmes Tower, which houses the interactive “Turtle Talk with Crush” show donated by Walt Disney Imagineering.

“I certainly enjoy working for Disney and all that it represents, and knowing that Disney is affiliated with CHOC Children’s, which did so much for my family when we were in a medical crisis – I think is a unique blend,” Andrew says.

Just after Sawyer’s first birthday, the family participated in its first CHOC Walk, now a family tradition that will continue at this year’s walk. “Team Sawyer” will strut proudly on Aug. 26, joined by its spunky and sassy, 3-year-old namesake, who knows exactly why they walk.

Geis family at CHOC Walk 2017
The Geis family, including Team Sawyer’s namesake, at CHOC Walk 2017.

“Sawyer will point to her scar and she’ll say, ‘Tell me about my scar,’” Andrew says. “We’ll talk about her heart and what was wrong with it and what had to be done with it. ‘Who was with me in the hospital?’ she’ll ask, and we’ll tell her, ‘We were all with you in the hospital.’”

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