A Better Alternative Than a Tracheostomy
by: Laura Stewart,MA (Lily's mom)
When I first met Dr. James Bradley from the Division of Plastic & Reconstructive Surgery at UCLA, my 10 day-old premature infant was being wheeled away into surgery. It was hard to feel confident that morning, but he told me not to worry and everything would be fine. I had to be positive and had to believe his words. My daughter, Lily, had spent the first days of her life intubated and was in need of surgery. She was born with a life threatening birth defect, an upper airway obstruction that left her unable to breathe or eat on her own.
There are conventional means to treat infants with severe upper airway obstruction that have been effective. Infants with conditions such as Pierre Robin Sequence, Stickler's Syndrome, Treacher Collins Syndrome, Nager Syndrome, and other craniofacial deformities are often given a tracheostomy to breathe and are fed through a stomach tube. However, there is another option, one that gives children a better quality of life, where they can be free of complications that the other modalities bring. For Lily and many others, mandibular distration osteogenesis or jaw distraction can be a better alternative.
My daughter Lily came into the world via emergency c-section, 7 weeks prior to her due date. Throughout the pregnancy, tests indicated she was healthy and during the 20 ultrasounds I received, a deformity was not detected. The moment she arrived, I could hear her cry echoing around the room. I assumed that meant everything was okay, but she was quickly removed from the room. The doctor's faces shared everything I needed to know, something was terribly wrong.
Lily was born with a condition called Pierre Robin Sequence. The specific characteristics of Pierre Robin Sequence involve micrognathia (small jaw with receding chin), glossoptosis and cleft palate. The causes of the condition are unknown and infants with this condition have both eating and breathing difficulties, the most necessary functions infants need to live. Truly understanding that Lily was unable to breathe or eat on her own left our entire family with tears in our eyes and a heavy weight upon our shoulders.
Promptly after birth, Lily was intubated and the neonatalogist sought treatment options for our daughter. After five days, the doctors in a metropolitan hospital, recommended Lily be treated through conventional means- placed with a tracheostomy and fed through a feeding tube until her jaw would grow. We were told the jaw would most likely grow, but that it would take anywhere between 1 to 5 years, if at all.
When hearing this news, I was overcome with emotion as visions of the next five years passed through my head. She would not lead a normal life, nor would the rest of our family. We would not be able to hear her cry for help, she would not be breast fed, let alone fed with a bottle. We would not hear her first words and she would struggle to communicate verbally most of her life. My greatest concern was the fact that with two "man made" holes in her throat and stomach, the possibility of infection would increase dramatically. I felt the risk of infection with an already compromised premature child, was too great. My husband and I hoped there was a different way.
We, along with family members, searched the Internet and made calls to doctors across the country. After numerous efforts, we found information about jaw distraction. Jaw distraction is a surgical technique that involves a gradual lengthening of the bones in the jaw. The process reduces the airway obstruction by advancing the tongue and opening the airway, thus allowing an infant to breathe on its own. We talked to many doctors on the east coast and were referred to Dr. Bradley at UCLA.
We also interviewed three other doctors in Southern California who had experience with the surgery. While Lily lay in the hospital with a machine breathing for her, we chose Dr. Bradley to perform the surgery because he had successfully performed the procedure on many newborns. We felt confident he could change the life of our 5- pound premature child.
Dr. Bradley and his colleagues conducted a study of neonates with upper airway obstructions during a 10-year period in two different academic centers. The results determined that infants who underwent jaw distraction had less hospital days, less emergency department visits, less respiratory infections, less reflux and the infants had improved feeding, growth, and speech. During the study, no deaths occurred for the children who received jaw distraction and 3 deaths occurred for children who were treated with conventional methods.
Karen Moormann from Orange County also gave birth to a child with Pierre Robin. Her son underwent the jaw distraction procedure with Dr. Bradley when he was 2 weeks old. "When faced with the decision of whether to do jaw distraction, we knew it was right for our son." Moormann said. "We wanted him to lead the best possible life". Moormann continued, "Throughout the last year I have participated in an online group with other mothers of children with Pierre Robin, now we are even more thankful we moved forward with jaw distraction. We have heard a number of children that have passed away from complications from the traditional methods of treatment." Children who have been treated via conventional means are at risk of death due to improperly placed feeding tubes, serious infections from the trache, pneumonia, etc. Everyday Moormann appreciates that her son is healthy, happy and is leading a normal life.
Are others aware that jaw distraction is available to them? I know how difficult it was to find up-to-date information about what treatment options were available for our daughter. The doctors at our hospital were unaware of jaw distraction and they actively discouraged us to proceed with this method.
I have met many moms of older children with upper airway obstructions who were unaware of jaw distraction when their children were born. They shared their deep concerns and wished they had known about the procedure much earlier. Some did move forward with the surgery at a later date with success, but wished they had known about jaw distraction prior to moving forward with conventional methods.
Lily was transferred to UCLA to undergo surgery when she was 10 days old. Her lower jaw was lengthened over a one-week period and she was successfully extubated after 7 days. We are thrilled with the results and with her progress over the last year and half. She can breathe on her own, she can eat, and she is speaking as well as any 18 month old could. Cognitively she is right on track and she loves to dance and play. The joy she has brought to our lives cannot be measured. Though she has been through some difficult times during the first few months of life, she is now happy and comfortable and truly enjoying every day. We are so thankful for Dr. Bradley and how he significantly changed our daughter's life.
It is my hope that by reading this article many more children will have a real future, just like Lily.
 Letter from Amanda
Hey Dr. Bradley!
This summer was great! Thanks for the awesome kickoff for summer! My nose is the bomb! I tell everyone, "I got a new nose this summer! It doesn't have that horrible flat spot anymore. Check it out!" I love it. I don't know how I survived without it!
Once I was allowed to do careful things that I wasn't allowed to do, I did low key barre exercises. I was very careful... so you wouldn't have to worry.
Anyway, thanks for a great summer with my new chin, nose, and gorgeous profile!
Thanks so much,
Amanda
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