National Blood Donor Month: Mackenzie’s Story

Before Mackenzie James-Wong was born, prenatal ultrasounds and testing diagnosed her with TAR syndrome, a rare genetic disorder that meant she was missing a bone in each forearm and had a dramatically low platelet count. Doctors also detected a heart defect that would require surgery immediately after she was born. Her mom Lindsay changed her birth plan so she could deliver at St. Joseph Hospital, and Mackenzie could immediately be under the care of nearby CHOC Children’s.

Her family’s relationship with CHOC’s Blood & Donor Services Center started when Mackenzie was in the Neonatal Intensive Care Unit (NICU).  They quickly learned how many transfusions lay ahead of them.

A healthy baby’s platelet count at birth is 50,000. Mackenzie’s was just 13,000. She needed transfusions right away. Mackenzie spent the first six weeks of her life at CHOC, and received dozens of platelet transfusions during that time. Over the next three years, she received nearly 200 blood and platelet donations.

MackenzieJamesWongNICU
Mackenzie spent the first six weeks of her life in CHOC’s Neonatal Intensive Care Unit.

“Sometimes she needed two transfusions in the same day. Eventually it slowed to every other day, and then once every 10 days, but then we regressed back to every four or five days,” said Lindsay. “The team from Blood & Donor Services visited us in the NICU, and educated us about the importance of finding regular donors who were a match for Mackenzie and who could provide a reliable and steady stream of platelet donations to fulfill her needs.”

The Blood & Donor Services Center identified two donors who were each a perfect blood and platelet match for Mackenzie. With her family’s permission, the donors heard Mackenzie’s story and how they could help. They opted into the Designated Donor Program, which allows a donor’s blood and platelets to be directed to a specific CHOC patient in need.  Mackenzie has since met her donors, who have become part of her family, Lindsay says. Every year in December, one donor dons a Santa Claus suit, grows out his beard, and brings Christmas gifts to his donation appointment for Mackenzie and her older sister. The pair of donors come to Mackenzie’s birthday party every year, and have been known to rush home from vacation to make special platelet donations if Mackenzie is in need.

Mackenzie at age four
Mackenzie at age four

Every time Mackenzie has an appointment at CHOC, she stops by the Blood & Donor Services Center with her mom to personally thank donors for helping kids just like her.

“I tell these donors every time I see them that they are literally saving my daughter’s life with every donation,” says Lindsay. “She would not be here without platelet donations. When they donate blood and platelets at CHOC, it stays at CHOC to help patients like my daughter.”

In 2015, CHOC donors supplied 45 percent of the blood and platelets needed by CHOC patients requiring a transfusion. CHOC had to purchase the remaining needed blood products from outside sources.

“Having blood and platelets come directly from our blood donor center allows us to have the freshest blood available to meet the critical needs of our patients, and support our recently opened Trauma Center,” said Colleen Casacchia, RN, manager, CHOC’s Blood & Donor Services Center. “CHOC relies on blood donors in our surrounding communities to help meet our patients’ transfusion needs. One blood donation can save two lives and only takes about one hour of time every two months.”

Donating blood and platelets at CHOC has become a family affair for Mackenzie’s relatives. Her dad, grandparents and aunts all donate blood and platelets at CHOC in honor of Mackenzie.

For Lindsay, donating blood began at a young age. She celebrated her 17th birthday by making her first blood donation. Although she isn’t a match for her daughter, she regularly donates blood at CHOC to help other patients in need.

“I can’t always give financially, but blood is something I have plenty of, and it really doesn’t take that much time out of my day,” she says.  “It was always something I was passionate about, but once it hit my family, I realized how life-saving it truly was. I want other persons to realize how important it is to donate blood and platelets, before someone in their family has a need for it.”

Learn more about donating blood and platelets at CHOC to help patients like Mackenzie.

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New Laser Treats Children with Vascular Anomalies

Many babies are born with small blemishes—a little patch of redness here, a birthmark there. These typically aren’t cause for concern, and most go away on their own. But what if they don’t?

Casey at birth and at two months old
Casey at birth and at two months old.

When Casey Lang was born, she had two small marks on her body: one on her left cheek, and one on her abdomen. “As the doctors were coming in to check on her, we kept asking if it was normal. They said it was a stork bite and that it would go away,” mom Michelle says. “A couple of weeks went by and it started to get darker and larger. I kept telling my husband, this is not right.”

By the time Casey was two months old, the blemish on her face had become blotchy and was encroaching on her eye, and the growth on her abdomen had grown to the size of a lime. Her parents were getting increasingly concerned.

Getting Answers

Michelle took Casey to her pediatrician, who referred her to CHOC Children’s plastic surgeon Dr. Daniel Jaffurs. Immediately upon seeing Casey, Dr. Jaffurs diagnosed the marks as infantile hemangiomas and consulted with the rest of the team from the CHOC Children’s Vascular Anomalies Center. They recommended that Casey be admitted to the hospital that day for comprehensive testing, to determine the severity of the hemangiomas.

“They started her on propranolol in the hospital and the journey started from there,” Michelle says. “It was a year on the medication, and we came to CHOC every single month. The medication was remarkable. It brought down the hemangioma on her face and opened up her eye.”

The growth on Casey’s stomach did not respond as well to the medication and was surgically removed by Dr. Jaffurs. What remained of the hemangioma on Casey’s face, however, could be treated with a simple procedure that had just become available at CHOC.

No Surgery, No Scar

CHOC’s new pulsed dye laser (PDL) is a minimally invasive treatment for hemangiomas, port-wine stains and post-surgical scarring anywhere on the body. The laser delivers very quick pulses of energy at a specific wavelength that is absorbed into the skin, destroying the abnormal blood vessels just below the surface. CHOC uses the latest PDL model—the Vbeam Perfecta— because of its level of precision, which is especially important when lasering sensitive areas like near the eye.

“With this new laser, we sometimes can avoid an operation which leaves a lasting scar,” Dr. Jaffurs says. “And, you can see the results immediately.”

Casey after her first laser treatment, and after her second laser treatment
Casey after her first laser treatment, and after her second laser treatment.

CHOC’s pediatrics-trained anesthesiologists give patients a small amount of anesthesia using a mask, to relax them and minimize movement during the procedure. Patients are sent home the same day; side effects are very minimal and may include slight pain or bruising. The number of treatments needed depends on the location and size of the vascular anomaly.

Casey was one of the first patients at CHOC to be treated with the pulsed dye laser and after just two treatments, the hemangioma on her face is nearly gone. Most patients require three to five treatments depending on the severity of the malformation.

“I want other parents to know that if their child has this, there is a cure for them,” Michelle says. “The team they have at CHOC, it’s just amazing, and if you go there, you’re going to get answers.”

The CHOC Children’s Vascular Anomalies Center brings together pediatric specialists in hematology, plastic surgery, head and neck surgery (ENT), cardiology and more to assess and treat all forms of vascular anomalies and malformations in children. For more information, call 714-509-3313.

CHOC’s new pulsed dye laser is generously supported by the Nora and Charles Hester Endowment for Craniofacial Care.

CHOC Children’s Patient Gives Back: Juneau’s Story

Juneau Resnick Speech

At 8 years of age, Juneau Resnick experienced a life-changing event. A close family friend, Gina, passed away after a devastating battle with brain cancer. Gina had devoted her life to working with infants in a neonatal intensive care unit (NICU). Juneau, who spent the first 40 days of her life in a NICU, developed a special bond with her. Owing to her prematurity, Juneau developed hydrocephalus necessitating numerous brain surgeries. After a series of difficult events, Juneau’s parents transferred her care to Dr. Michael Muhonen, medical director of The CHOC Children’s Neuroscience Institute.

To honor Gina and to thank Dr. Muhonen and the CHOC team who did so much to improve her health, Juneau and her teacher came up with the idea of a fundraiser to coincide with the 100th day of school. In addition to passing out flyers, Juneau spoke in front of 700 people at a school assembly. She shared her personal experience with CHOC, and made a plea for each student to bring in 100 coins. Combined with a baked goods and lemonade sale organized by Juneau, the students’ donations totaled almost $1,000.

“She is truly passionate about helping others. She has an unwavering passion that I’ve never seen before and I work with kids,” says Juneau’s mom Ai, a substitute teacher. “I’ve seen a lot, and she is a rare bird.”

Juneau remains dedicated to continuing to raise money for CHOC. Every month, she partners with her teacher to sell pencils, erasers and other supplies at school to support an initiative dubbed Kids and K9, benefitting a local animal shelter and CHOC.

“I’m doing it to make kids happy and put a smile on their faces,” said Juneau. “I want them to forget where they are and just have fun.”

The young philanthropist is grateful for her renewed health and so happy to be under the care of CHOC Children’s.

Learn how you can start your own fundraiser for CHOC.

A Teenager With Epilepsy: Stephen’s Story

In Recognition of Epilepsy Awareness Month, we spoke with a teenager with the condition to learn more about life with epilepsy, and what advice he would offer a newly diagnosed patient.

Stephen Moore

Stephen Moore swallows eight pills daily, avoids heights and contact sports, and pays close attention to his body’s cues. This routine, combined with the care of CHOC Children’s specialists, has helped keep the 15-year-old seizure-free since his epilepsy diagnosis three years ago.

Stephen is one of 2.5 million Americans with epilepsy, a neurological condition wherein abnormal electrical activity in the brain can cause seizures, convulsions or sensory disturbances.

He was diagnosed at age 12 after experiencing a seizure one Sunday afternoon while watching a football game on television with his parents.

“I got up, took a step forward and collapsed on the ground,” he says. “My parents wanted to know if I was alright and what was going on. I could hear them, but I couldn’t respond. It was like the muscles in my jaw just weren’t there and I couldn’t move them.”

An ultimate epilepsy diagnosis and subsequent care plan was at first confusing and distressing for Stephen.

“I got the feeling that all kids who are newly diagnosed get,” he says. “Your heart sinks. You hear, ‘You can’t do this, you can’t do that,’ and it’s like, ‘What am I supposed to do?’”

For Stephen, the “can’ts” include activities that involve heights, like rock climbing or a pool’s high-dive. He can’t swim alone and must always wear a helmet while bicycling – good advice for everyone – and he must also pass on contact sports, like football.

For the then 12-year-old Stephen, these restrictions at first seemed insurmountable.

“It was very depressing,” he said. “But I’ve gotten through it. It took some time, about two months after I was diagnosed.”

Now, three years later, Stephen has mostly made peace with his condition, which could become life-long. His advice to newly diagnosed patients would be to listen to their bodies’ needs and talk to people about the condition. These measures help him maintain both physical and emotional health.

“At first, I was afraid to talk to anyone,” he said. “I don’ t know if I didn’t want people to know or I just didn’t want to think about it myself, but I learned that you definitely need to talk about it, otherwise you’ll bottle that up.”

A freshman in high school, Stephen is enrolled in honors and AP courses and particularly enjoys Spanish class. His teachers and a few friends know about his condition, but he doesn’t let epilepsy and the threat of another seizure rule his life.

“I don’t worry about that,” he says. “I know I have it and seizures can happen, but I don’t think about it because it does me no favors.”

Learn more about CHOC Children’s comprehensive epilepsy program.

Innovative Cancer Treatment: Abbey’s Story

Abbey and Jaime Serna, phlebotomist at CHOC Children's hospital.
Abbey Schemmer and Jaime Serna, phlebotomist at CHOC Children’s Hospital.

While many teenaged girls might balk at wearing a medical device on their shaved heads 18 hours a day, Abbey Schemmer didn’t blink an eye.

After all, the 16-year-old CHOC Children’s patient was fighting for her life.

Following the diagnosis of two brain tumors – including a rare, extremely aggressive type called glioblastoma multiforme – and several surgeries, Abbey and her family turned to a new technique to halt the tumors’ growth: tumor treating fields, or TTF.

TTF uses electromagnetic forces to prevent this type of tumor from dividing and growing. TTF was only recently approved for adult use, and as a pediatric patient, Abbey received special clearance to use ahelmet-like device that administers the treatment.

Worn continuously for 18 hours a day, the helmet places electrodes directly on Abbey’s scalp, which requires her to shave her head every few days so that the helmet’s electrodes directly touch her skin. Abbey wears the device’s power source in a backpack.

“This is not an easy treatment,” said Dr. Violet Shen, Abbey’s oncologist at CHOC. “But she was willing to do that and is wearing her helmet and head dressings and still going on with her life.”

Following about nine months of TTF treatment and chemotherapy, Abbey’s tumor shows no signs of major progression, Dr. Shen said.

The progress is a marked departure from expectations when Abbey was diagnosed in early 2013 following complaints of nausea, headaches and lethargy.

“We thought we had a sick little girl,” said Ken, Abbey’s father. “We were thinking she wouldn’t live for very long.”

Abbey immediately underwent surgery to remove the tumor, followed by chemotherapy and radiation. She stayed in good spirits and continued with school, but after she experienced seizures in summer 2014, it was clear the glioblastoma had grown back.

After another surgery to remove Abbey’s right frontal lobe, the family explored other methods to curb the tumor’s growth, and ultimately turned to TTF.

“It was cool that it could help my cancer,” Abbey said.

In the months following, Abbey has continued in school and she’s looking forward to beginning driver’s education. Her schoolmates have rallied around her, and taken an interest in her unique treatment, Abbey said. “People ask me questions,” she said. “They think it’s fun because my backpack generates heat. They ask, ‘Can I see your heater?’”

If this treatment continues to work, Abbey could feasibly continue to wear the helmet for the rest of her life, Ken says. For now, her family is taking the treatment one day at a time.

“It’s been working,” Dr. Shen said. “Very few people survive with this tumor for six months, let alone a year. Abby’s done well. She’s very vigorous and still attending school. Abbey’s definitely a fighter.”

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Former CHOC patient, Brant Whiting Fulfills Dream of Playing Professional Baseball

CHOC Children'sFor Lisa and Mikel Whiting, CHOC Children’s not only saved their son’s life, but solved an eight-year mystery — allowing him to pursue dreams once thought unattainable. From infancy, Brant Whiting suffered severe asthma that caused asthma attacks every single night of his life. Brant describes the experience as trying to breathe through a straw.

One night, at age 8, Brant stopped breathing altogether and was rushed to a local hospital. Doctors said that Brant’s labs “were incompatible with life” and he might not survive the trip to CHOC Children’s in the transport ambulance. But he did, and Dr. Nick Anas, CHOC’s pediatrician-in-chief and his team worked for five hours to keep Brant alive. They succeeded. After six days in a medically induced coma on life support, Brant awoke — and survived. brant dodgers logo

In fact, not only did he survive, CHOC doctors were able to determine the underlying cause of Brant’s asthma — gastric reflux. He underwent a fundoplication procedure at CHOC, eliminating about 85 percent of his asthma symptoms. This correct diagnosis gave Brant the chance to pursue his dreams: playing professional baseball. He played catcher on Stanford University’s baseball team for four years before being drafted by the Los Angeles Dodgers. A precious life saved… and a dream fulfilled.

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Alicia’s Story: Repairing a Right-Sided Congenital Diaphragmatic Hernia

CHOC Surgical NICUAlmost six months ago, little Alicia was born at full term, beautiful with 10 fingers, 10 toes and a life-threatening defect buried inside her tiny chest.

Alicia had a congenital diaphragmatic hernia (CDH), a condition wherein a hole in the diaphragm allows abdominal organs to move into the chest. And this case was especially serious.

Though less common, hernias on the body’s right side are more dangerous because the liver, a larger organ, can move into the chest cavity, impairing lung development, impeding blood vessel functionality and ultimately causing pulmonary hypertension, says Dr. Mustafa Kabeer, Alicia’s surgeon at CHOC Children’s.

Just 20 percent of CDH cases are right-sided, and about 40-50 percent of babies nationwide survive their treatment; conversely, more common left-sided hernias yield about an 80-90 percent survival rate, Dr. Kabeer says.

Prenatal meetings remain key

After the diagnosis, Alicia’s mother Marlen began meeting with Dr. Kabeer and other specialists to prepare for her baby’s birth and treatment afterward.

“It helped because we had the prenatal meeting,” Dr. Kabeer says. “That way, parents can connect a face to a particular job in the care of their baby. They are educated and know what to expect during treatment.”

Just hours after her birth, Alicia’s condition began dramatically deteriorating. A transfer to CHOC was necessary, and Marlen and her husband were warned that Alicia would not likely survive the 2-mile ambulance ride to the children’s hospital.

But she made it, and quickly began treatment under a life-saving device called extracorporeal membrane oxygenation (ECMO) to help her compromised lungs. First pioneered at CHOC about 40 years ago, ECMO is a heart and lung bypass machine that can be used to rest a failing heart or lungs, providing complete support until the organs recover.

About a week later, Dr. Kabeer performed the procedure to repair the diaphragmatic hernia, all while Alicia remained on ECMO with substantially high risks of uncontrollable bleeding due to the blood thinners needed while on the treatment.

Alicia sailed through the surgery with little bleeding, but within the next day or so, Dr. Kabeer needed to perform two separate procedures to relieve pressure building inside her abdomen that compromised blood flow to the lower half of her body.

Two weeks old and five surgeries

Shortly after this surgery, Alicia began to bleed. During the next four days, she had ongoing bleeding and during the fourth day, lost about 1,500 mL of blood, or about six times her normal blood volume. Hospital staff kept her stable, and Alicia was taken off of ECMO. Two days later, Dr. Kabeer performed a final surgery to close her abdomen, which had been left open all of this time to decrease the pressure.

“All of those surgeries were very high-risk surgeries,” Marlen says. “There was a very high chance she wouldn’t make it, but she did perfectly.”

Throughout the entire process, Dr. Kabeer communicated with Marlen and Omar about the risks of the surgeries. And like every other time Alicia’s parents were cautioned about her survival, the tiny infant fought back.

Baby Alicia today.
Baby Alicia today.

“Even though it’s a difficult subject, and a complicated, emotional and anxiety-provoking issue, we want parents to understand the problem their child is facing and that we’re trying to help them and their baby overcome it,” Dr. Kabeer says. “That connection and rapport are very important and it all stems from honesty.”

“It involved a very transparent discussion,” Dr. Kabeer said. “I laid out for them all of the issues and all of my concerns, and made them see that we’re going to do our best and face these challenges together. I want to give parents reassurance and security to know that not only are they in a good place, but they’re with staff who are well trained.”

Coordinated care in the Surgical NICU

Between her five surgeries and afterward, Alicia was closely monitored inside CHOC’s Surgical Neonatal Intensive Care Unit, a special part of the hospital’s main NICU dedicated to the care of babies who need surgery.

In the unit, the team cares for patients jointly, discussing the cases of children like Alicia as a group and forming a treatment plan that often calls for the expertise of other specialties at CHOC.

After about several months in the surgical NICU, Alicia is now back at home with her family. She’ll likely rely on oxygen support for a while longer and therapy will be required to help her eat on her own, but Alicia is expected to grow and thrive like other children.

“Alicia’s case reinforces the fact that babies are extremely resilient,” Dr. Kabeer says. “It’s amazing that she tolerated all of this. Every patient is unique and this is a perfect example of why we should give them every chance possible.”

Learn more about CHOC’s Surgical NICU.

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Twelve-year-old becomes first CHOC patient to receive life-saving device

Erin Greaves and her son, Sean.
Sean and his mom, Erin.

Erin Greaves woke to the sound of her son’s gasp and the dogs barking. The pediatric nurse raced to 12-year-old Sean’s room and immediately began performing CPR. When paramedics arrived, Sean was experiencing ventricular fibrillation, a serious heart rhythm problem that is the most common cause of sudden cardiac death. He was defibrillated twice before being taken to a nearby hospital, and subsequently transported to CHOC Children’s.

As a patient in CHOC’s pediatric intensive care unit, Sean underwent a series of tests, including a cardiac MRI, cardiac catheterization, exercise tests and genetic testing. Results revealed no structural damage to his heart and no underlying condition. Sean’s ventricular fibrillation was ruled idiopathic, which means no known cause.

Sean’s cardiologist, Dr. Anthony McCanta, has specialized expertise in the treatment of irregular heart rhythms and presented a unique option to Sean and Erin. Physicians primarily use implantable cardioverter defibrillators (ICDs) to treat the most serious heart rhythm problems. The device constantly tracks the patient’s heart rhythm and delivers an electric shock to the heart when it beats abnormally fast. Traditional defibrillators require electrical conductor wires, or leads, to be inserted into the heart through a vein in the upper chest.

Sean and his mom chose a newer treatment option called the Subcutaneous Implantable Cardioverter Defibrillator (S-ICD). The 12-year-old became the first CHOC patient to receive the device.

“The S-ICD is not as invasive as other ICDs since the sensing and defibrillating electrode is implanted directly under the skin of the chest wall and it is connected to a generator in the axilla, or lower armpit area. No component of the device is inside the veins, heart, or even the inner chest itself. Consequently, there are fewer future complications of leads in the vein and heart, and a much faster recovery time — tangible benefits for young active children,” explains Dr. McCanta.

Just one week after Sean’s frightening ordeal, he was back at home in excellent condition.

“Even though I am a pediatric nurse, I am a mom first. I have tremendous gratitude for Dr. McCanta and the CHOC team who took such excellent care of Sean. He is back at home, playing with the dogs and his friends, and looking forward to starting middle school in the fall,” says Erin.

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Derek’s Story: A Landmark Procedure

Derek Young looked like any other baby when he was born in February 1994. But 3-1/2 months later, his mother Pamela noticed his head was slowly getting larger. Doctors diagnosed hydrocephalus, or fluid on the brain, and placed a shunt to drain the fluid. Fast forward 10 years when Derek needed a shunt revision. He was treated at the CHOC Children’s Neuroscience Institute and released.

CHOC Children's Neuroscience Institute

However, six months later, Derek returned to CHOC with what appeared to be a failure of the original shunt. Neurosurgeon Dr. Michael Muhonen decided to perform a pioneering procedure called a third ventriculostomy in which he made a tiny hole in the wall of the third ventricle of the brain — allowing movement of fluid out of the blocked ventricle.

As a result of this extraordinary surgery, Derek no longer required a shunt nor did he or his mother need to live in constant fear of shunt failure. An avid swimmer, this procedure allowed him to continue to pursue his passion, including completing a Catalina-to-Long-Beach swim to raise money for CHOC.

Derek is now a 6’2” 20-year-old junior at Northern Arizona University studying to be an emergency room or intensive care unit nurse, a career directly inspired from his experience with CHOC. From the compassionate, skilled nurses who made him laugh to the expert, encouraging doctors who described the procedure in terms he could understand, Derek’s experience with CHOC was life-changing.

Learn more about CHOC Children’s Neuroscience Institute.

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Genetic Syndrome Causes Cleft Lip, Palate in Sisters

CHOC Children’s Cleft and Craniofacial Program Just like most sisters, Tristyn and Raigyn Snyder will share toys, clothes and friends throughout their lives. They also share something unique: a genetic condition called Van der Woude syndrome.

In the Genes

When Cindy Snyder was 12 weeks pregnant with Tristyn, a prenatal ultrasound showed that the baby had a bilateral cleft lip and palate. After Tristyn was born, specialists at the CHOC Children’s Cleft and Craniofacial Program noticed she also had small indentations on her bottom lip, or “lip pits,” a key marker of Van der Woude syndrome (VWS).

Van der Woude syndrome is the most common single-cause of cleft lip and palate. Individuals with VWS may have a cleft lip with or without a cleft palate, a submucous cleft palate, lip pits along the lower lip, or any combination of these features. Tristyn’s dad, Matt, also has Van der Woude syndrome and had a unilateral cleft lip as a child.

“If a child’s mother or father has Van der Woude syndrome, each child would have a 50 percent chance of also having the condition,” according to Dr. Neda Zadeh, a CHOC Children’s genetic specialist. “VWS can present differently in each person. For instance, a mom may have had lip pits, but her child could have a cleft palate and no evidence of lip pits.”

Shortly after Tristyn’s birth in 2011, she had a nasoalveolar molding (NAM) device fitted inside her mouth to partially close her cleft. Plastic surgeon Dr. Michael Sundine performed surgery at CHOC to repair Tristyn’s lip when she was seven months old, and he did a second surgery when she was 10 months old to finish her palate repair and remove the lip pits.

Now 3 years old, Tristyn barely shows any physical evidence of her condition. Other than a need for speech therapy, “No one even knows anything happened to her,” Cindy says.

Baby Raigyn after her surgery.
Baby Raigyn after her surgery.

The Decision to Expand Their Family

“We wanted to have another child, regardless,” Cindy says. “Some people are like, how could you have another one? Tristyn is so happy and healthy. How could we not have another one?”

In 2014, Cindy and Matt were thrilled to learn they were expecting another girl, Raigyn. An ultrasound showed that Raigyn’s lip was not forming properly, a sign that she likely had Van der Woude syndrome. A genetic test could have confirmed it, but the Snyders opted out.

“We didn’t really need to know either way, and we felt like the cleft was enough to know,” Cindy says.

The Snyders were prepared when Raigyn was born with a bilateral cleft lip and palate. She wore a NAM device and recently had surgery to repair her lip. In a few months, she’ll have another procedure to repair her palate. Cindy is confident that Raigyn will continue to develop normally, just like her big sister.

“They are perfectly healthy children,” Cindy says. “Everyone’s born with different things, and this is just what they were born with.”

Learn more about cleft and craniofacial services at CHOC.
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