Updated: Jan 26, 2022
The Children's Airway First Foundation was created to change the way pediatric professionals approach childhood airway disorders. We are focused on breathing disorder prevention through education and treatment. Our fight for children's health all began with the story of one little girl, Savvy Sparks.
Here you can read and listen (via the podcast below) to Savvy's story as told by her mother.
CHILDHOOD AIRWAY DISORDERS: SAVVY'S BIRTH
On the day my daughter, Savvy, was born, at Sibley Hospital in Washington D.C., she was seen by four doctors, several nurses, and a lactation consultant. Savvy is the fourth child I have given birth to. She has three, much older brothers. At 49 years of age, the doctors were worried that my labor might not progress “normally”. Instead, once things got going, she rocketed into the world in eight minutes in a pool of meconium-filled amniotic fluid.
The NICU doctor was called at once. He had to examine her thoroughly to make sure that none of the meconium had entered her respiratory system. In the midst of the chaos, the OB/GYN had delivered so many babies that morning that the clamp flew off as he tried to preserve the cord blood, - spewing the precious fluid everywhere. Finally, the nurses took her measurements and APGAR score, bathed and swaddled her, and placed her on my chest for her first breastfeeding. All went well. There she was. The healthy little girl my husband, Brad, and I had been longing for.
Later that day, her Godmother, my best friend and also a practicing OB/GYN, came to visit. Kathy had coached me through the ups and downs and ins and outs of our search and personal selection of our wonderful 21-year-old egg donor and our IVF experience. (Much like me, our donor is a college-educated and unusually talkative, Swedish American.) A little later, our carefully selected pediatrician arrived. She was a very experienced and mature woman with a highly respected practice. She methodically examined Savvy and exclaimed what a robust, full-term, “almost nine-pounder” she was. She then watched as Savvy quickly fell back asleep-- with her mouth open! There you have it! There were four top doctors, who were then followed by several outstanding nurses and a lactation consultant, over the first 24 hours. The lactation consultant quickly checked Savvy’s latch and feeding, and said she was doing great!
I tell you all of this because there were so many opportunities to discover, in those first precious few hours, that Savvy was born with a high V-shaped dental arch. Her lips could have been described as having “an accentuated cupid’s bow” shape which is classic for someone who has a predominantly lip-apart posture. Her lower lip was “flaccid and rolled out” which is also classic for a mouth breather, and she was mouth breathing continuously. It is said that “We see what we know.” What if they had all known what they were seeing and how it would impact her growth and development? Because, as in the words of the New York Times bestselling author, James Nestor, “There is nothing more essential to our health and well-being than breathing.” Sadly, over the next nineteen years, an absolute nightmare of devastating hypoxic brain injuries and systemic co-morbidities has ensued.
CHILDHOOD AIRWAY DISORDERS: THE EARLY WARNINGS
While living in Seattle, I brought Savvy with me to my cosmetic dentist, Dr. Brian McKay. Savvy was about 18 months old at the time. He took one look at her and said, “She is going to need some work as she gets older. You need to see a Dr. Hang in California when she is around six to nine years of age.” I honestly couldn’t imagine what he was talking about. I quickly dismissed it thinking I wouldn’t have to worry about it until she was at least six years old. Dr. McKay was the only one, with his highly trained eye and specialized knowledge, to immediately see what had become obvious to him. “We see what we know.”
I breastfed Savvy for 32 months slowly weaning her onto chunky vegetable and chicken soups and stews. We traveled from coast to coast so often that it was much easier to nurse her on demand than have to worry about carrying bottles. Instead, we carried books. Lots of them. We read often throughout the day and evening. She never had a pacifier. She had her first dental exam at the age of two.
At 34 months, she developed RSV and was hospitalized at Seattle Children’s Hospital for several days. There, she was seen by several hospitalists and various pediatric clinicians. No one mentioned her mouth breathing and craniofacial respiratory complex anomalies. Her pediatrician was not sure if it was just RSV or pneumonia. At 36 months, she started theater school. A year later, she began pre-school.
Savvy was a kid who loved the Smithsonian Museum of Natural History, Broadway plays, Aquariums, and Science Museums. She wanted to play Clara in the Nutcracker and studied ballet. She even attended a few MIT lectures with her dad. Many people remarked about her extraordinary intelligence and maturity. –Must be those elderly, doting parents!!!
When Savvy was six, we moved to Scottsdale, Arizona. One day, she was running a race and collapsed. We immediately took her to see her pediatrician who sent her to a pediatric cardiologist and pediatric pulmonologist. Many tests and images were gathered. They found nothing wrong with her heart or lungs and did not mention her gummy smile, budding severe Class II malocclusion, and continuous mouth breathing. Brad and I thought that the malocclusion was similar to the buck teeth he and his brother sported as kids. We would have to consult an orthodontist or meet with Dr. Hang in California when all of her secondary teeth were in. Her new pediatric dentist filled her cavities and reminded her to practice good dental hygiene.
CHILDHOOD AIRWAY DISORDERS: THE DISASTER
At eight years of age, we moved again. This time to Austin, Texas. Savvy was so bright that she was accepted into one of the top private prep schools. Her new classmates were amazed at her massive cartoonish grin. The Class II malocclusion had taken over her lower face. She could not, and never could close her mouth. We consulted with the leading, local orthodontist. He told us that she would need a double jaw, orthognathic, surgery at the age of seventeen. In the meantime, he could give her a nice smile. We asked about consulting with Dr. Hang. He said he would be happy to but it would not change anything. Little did we know that retractive orthodontics was considered the gold standard for treating Savvy’s severe malocclusion and the devastation it would contribute to.
Retractive orthodontics were applied to Savvy’s teeth together with an upper palate rapid expander. There were many routine checkups and adjustments. Yet, when we traveled to New York for the holidays, Savvy could no longer walk quickly through the airport or down the street. We thought maybe she was having growing pains in her legs and feet. We tried new, softer shoes and other techniques but ended up having to take a taxi everywhere. This had never happened before. Yet, Savvy soldiered on at school and tried to keep up with her friends as they crossed campus from building to building. The following year, I attended her annual school Celebration of Fitness and watched Savvy jump rope for a minute or two and collapse like a fish out of water gasping for air. Her pediatrician said she had exercise-induced asthma and prescribed inhalers. She was also placed with children who had various disabilities and a wonderful friend who suffered from leukemia. He knew she was trying her best but could not physically keep up. Why didn’t we understand that she couldn’t breathe well?
When we stayed in hotels, I would hear Savvy grinding her teeth, known as bruxism. She tossed and turned all night and was waking up often as she tried to sleep. It took longer and longer for her to complete her homework but she always did. The problem was she couldn’t remember to turn it in. Her teachers would call. We had everything organized in special folders ready to go. She could not remember to bring certain items to class. It infuriated some of her teachers. Savvy started to feel that she wasn’t smart anymore. She was accused of faking it when her ankles started rolling and she was oftentimes on crutches. There was no diagnosis. One day, her fifth-grade teacher told me that Savvy was simply blanking out from time to time. When we asked her about it, she said she was scared because she couldn’t recall much of her childhood either. We took her to Texas Children’s in Houston to see the world-renowned pediatric pulmonologists who had kept the boy in the bubble alive for years. They ran tests. They took images and they told Savvy she was a mystery and should probably consider not going to such a stressful school anymore. Then they prescribed stronger inhalers.
We thought Savvy would like a break from school so we took her with us on a business trip to China. She passed out in the Himalayas. Our colleague, who has suffered from sleep apnea for years, offered to share his oxygen tanks with her.
Savvy kept trying. She wanted to play volleyball with her friends at school and be part of the team. She was an expert at serving but as she had to run for a ball, she would roll or dislocate an ankle or knee so her pediatrician examined her thoroughly. He did notice the scalloping on her tongue and her worn teeth. He didn’t know why or what they represented. He told us we would have to build her up by taking her to the track and doing a run and walk routine to strengthen her. And, when she needed them, she should be sure to use her crutches.
Walking the stairs in the new junior high building took time for Savvy. She needed her own key card for the building so she could enter late after everyone else had arrived. Her best friend had passed away from leukemia. She had watched him grow weaker and weaker and she began to wonder when she, too, might succumb. She wrote about it. I found it. We rushed her to a friend in Seattle who was an extraordinary family psychologist. Dr. Beauchamp asked Savvy how she was doing. Savvy answered, “I’m suffering.”
Later that same day in Seattle, we stopped to see Dr. Brian McKay. He examined Savvy and said, “Oh my gosh! I don’t know how she can breathe! She is 50 to 80% blocked! You must see Dr. Hang immediately.” Savvy was only twelve years old. Dr. Hang recommended we see Joy Moeller first. Joy recommended we try some breathing sessions with Patrick McKeown. At 6:00 am, prior to going to school, Savvy would skype with Patrick. She was in a cold sweat from being unable to sleep well and had great difficulty trying to do the breathing exercises.
We flew out to Los Angeles to see Joy. She looked and said Savvy was severely blocked. It was too late for myofunctional therapy, too. We went to see Dr. Hang. He took images and called Dr. Larry Wolford. Then we flew to Dallas. Savvy would need orthognathic surgery. Dr. Hang would prepare her over the next six months and Joy would help with myofunctional therapy. Ten days before Savvy’s surgery, we went to see the late Dr. Christian Guilleminault at Stanford Medical Center.
Savvy was too weak to walk and needed a wheelchair to get through the airports and around buildings. Dr. Guilleminault immediately ordered testing for M.S. and Narcolepsy. He immediately diagnosed her with obstructive sleep apnea. Fortunately, Savvy’s tests were negative for M.S. and Narcolepsy. Our insurance company, Blue Cross Blue Shield of Texas, said that if she did not have sleep apnea, it would not reimburse for the surgery because it would be considered dental and cosmetic.
CHILDHOOD AIRWAY DISORDERS: TREATMENT AND HOPE
On December 15, 2015, Savvy underwent a nine-hour surgery to bring both jaws forward and to correct her craniofacial respiratory complex. Her turbinates and nasal passages had atrophied. She was only 13 years of age. In a few days following surgery, Savvy could breathe through her nose for the first time in her life. She could close her mouth and sleep with her mouth closed. She no longer was grinding her teeth or awakening during the night with a dry mouth. She no longer suffered from sleep apnea. Three weeks later, she was sitting on the curb of her new Performing Arts Academy in Austin, waiting for school to reopen after the Christmas holiday break. Savvy was doing well and asked if we could move back to Seattle the following year because it would be easier to breathe cooler humid air. We did.
At 16, Savvy wanted to go to college. She was accepted at a top 50 private college in Walla Walla, Washington, known as Whitman College. The dorm had some mold. Savvy was very sensitive to it. It also started to get very cold and there was ice and snow covering the sidewalks. She began falling. Her joints ached and her temporomandibular joints were causing pain as well. We went to the Mayo Clinic in Rochester, Minnesota. Savvy was seen by a pediatric neurologist and pediatric rheumatologist. They diagnosed her with POTS, patella-femoral disorder, and medical PTSD. We also went back to Dr. Wolford. Her TMJs were worn out and would not be getting better. They were replaced with titanium after a six-month wait for customization and manufacturing. Savvy’s shoulders, knees, ankles, hips, fingers, toes, elbows, -were all starting to partially or fully dislocate.
In February of 2019, she was diagnosed with hypermobile Ehlers-Danlos Syndrome. In July, she was diagnosed with hypoxic brain damage by the Daniel Amen affiliate clinic in Plano, Texas. All of this was happening during the start of the pandemic. At times, Savvy became despondent. We had some of her friends move in with our family and hired an incredible naturopath who ensures proper nutrition and provides customized supplements and herbs as well as acupuncture treatments. Savvy also has a great chiropractor specializing in active release techniques as well as physical therapy for hEDS patients. Best of all, she has a dynamic life coach that helps her see her full potential and how she can live a purposeful, happier, healthier life despite her incurable, debilitating conditions. Savvy must focus on staying mobile and healthy every day. Her team of specialists works with her several days per week to manage chronic pain and reset joints that have subluxations or dislocations.
There are many children all over the world that suffer from craniofacial anomalies that impact their ability to sleep and breathe well. Eventually, many suffer from systemic conditions that harm their brains and bodies and lower their life expectancies. Others develop these problems from living in homes with poor hygiene or environments with many toxins. We must help them all by learning to screen, evaluate, and treat these debilitating disorders. To learn more please see: www.childrensairwayfirst.org
Savvy is also helping us with our new Children’s Airway First Foundation by gathering stories from the many people she has met going through her surgeries and therapies with related conditions. She will help us with social media, a massive public health campaign, and fundraising events as we work to end this worldwide epidemic of airway disorders.
Now you know what to look for.
CHILDHOOD AIRWAY DISORDERS: DONATE NOW
There is a silent epidemic weaving its way throughout the children of the world. Sleep issues, an inability to focus or concentrate, lack of energy, and even depression are all symptoms that can be traced back to childhood airway disorders. If caught and treated early enough, the pain and suffering a child experiences can be avoided. Without identification and treatment, a child suffering from an airway disorder will experience pain, exhaustion, mental issues, and even death.
The Children's Airway First Foundation (CAFF) is on a mission to ensure that both parents and pediatric medical professionals become educated on the causes of childhood airway disorders, the signs and symptoms to look for, and what treatment options are available.
Your donation allows us to continue our mission of education and prevention of pediatric airway disorders.
We are a 501(c)(3) charity supported by donations, sponsorships, and volunteer effort. Contributions are tax-deductible to the extent allowed by law; IRS EIN 86-2254672.