Autumn's History and Health Update

History:

On November 15, 1999, Autumn was born with a tracheo-esophageal fistula (the lower part of the esophagus and trachea were abnormally joined together) and esophageal atresia (the upper part of the esophagus formed a pouch in the throat which did not extend down to the stomach). A successful tracheo-esophageal surgical repair was performed at 23 hours old; however, tragically, the left vocal cord was accidentally paralyzed hours after surgery when Autumn stopped breathing and doctors performed an emergency intubation/resuscitation, saving her life.

During Autumn's stay in the Neonatal Intensive Care Unit, the paralyzed left cord was found to be the cause of Autumn's "silent- or no cough" aspiration of all liquids into her lungs. (Silent aspiration is an extremely dangerous condition which can lead to pneumonia or even death). Doctors voiced that Autumn would most likely never be able to breastfeed. Nasal gastric tube feeding's of pumped breastmilk would be necessary to sustain her life until she could learn to swallow safely on her own with one existing vocal cord.

Finally, at four months of age, Autumn's swallow study showed remarkable improvement. Doctors were amazed that she had miraculously learned how to use one vocal cord to keep most liquid out of her lungs. Autumn was then given a carefully monitored trial run of breastfeeding. From the start, she loved the bonding, security, and closeness that breastfeeding provides. Autumn immediately latched on with ease and slowly learned how to handle the flow of breastmilk over the next two years.

Breastfeeding proved to be the missing key that brought comfort and health benefits to both mother and child. Autumn has never had even one ear infection, allergies, or asthma, (which is very unusual in children with this condition) and she almost never gets a virus (with the exception of RSV) that circulates throughout the busy Neurohr household. Doctors and mother all agree that breastfeeding has made the difference in Autumn's life.

Despite overall good health, Autumn still contends with choking, silent aspiration, pneumonia, and severe GERD (gastro-esophageal reflux disease) which increases her chance of developing esophageal cancer during her lifetime. She has contracted the RSV (Respiratory Syncitial Virus) twice which turned into a series of pneumonias both times.

Update:

Autumn, now five years old, is relatively healthy and well. She chokes less frequently on solid foods that get lodged in her narrow esophagus, has fewer pneumonias, and talks and covers her airway using only one vocal cord.

During 2003, Autumn had two hospitalizations. In July, a team of specialists checked her vocal cord status (still paralyzed and not likely to regain function) and took a sample biopsy from her esophagus to check for early cell changes caused by gastro-esophageal reflux disease. (Cell changes were minimal in one area of her esophagus only). It is necessary to keep tabs on any esophageal cell changes that occur over time. Babies born with TEF and EA have an increased risk of developing esophageal cancer during their lifetime. In addition to checking her vocal cord and esophageal biopsy, all of Autumn's baby teeth were capped due to decay from acidic reflux splashing up and down the esophagus into the mouth.

Autumn was also hospitalized in December 2003 for RSV pneumonia and November 2004. She gets very sick, very fast, so we have to move quickly when we see her respirations become remarkably increased. A large portion of Autumn's trachea is floppy. This is called tracheomalacia - or weakened, floppy cartlidges of the trachea where the esophagus was surgically disconnected from the trachea 17 hours after birth. Autumn's severe tracheomalacia makes it difficult for her to clear even the smallest amounts of secretions from a cold/flu.

Autumn is gifted academically and has advanced cognitive/developmental skills, which allow her to excel in life. She attends pre-school three hours/day. No one would ever know by looking at this tiny little girl (30 pounds) that she has ever faced serious medical challenges. By all accounts, Autumn is thriving.

This blue-eyed beauty with long, cascading, brunette hair has a deep maternal spirit. She instinctively "mothers" everyone around her, including her adored puppies and school friends. Autumn loves ballet lessons and dreams of being a prima ballerina someday. She was recently cast as "the baby ballerina," in the musical "Fairytales."

In summation, Autumn has enjoyed improved health over time. TEF and EA babies routinely do quite well after the first few difficult years of life. The trachea and esophagus usually get bigger and stronger as the child grows. Breathing and choking become less of a problem. Medication dosage for GERD is continually reevaluated to help prevent esophageal erosions and esophageal cancer.

A nissen-fundoplication surgery (to partially tie Autumn's stomach off if the GERD gets out of control) has been put on hold for now. Autumn's pediatric surgeon, Dr. Darrell Hermann, has said this surgery could do more damage than good and should be a last resort if Autumn's esophagus becomes unhealthy.

Happily, Autumn is a joyful, confident child who whirls and twirls her way through life, living in the moment, seemingly carefree and unaffected by her past or present medical challenges. She embodies a deep spirited soul and has a twinkle in her eye. Autumn unknowingly touches so many hearts. The future is hers.