A diagnosis of esophageal atresia and the presentation of unacceptable options leads three New York City families to seek care and hope in Minnesota.
What would you do if you were told your child would probably never eat normally, and would have a feeding tube in his or her stomach for life? When their first baby Christopher was born with esophageal atresia (EA), Cathy and Chris Meehan from New Hyde Park, New York, decided to go to the Internet in search of another answer. Vivianne and Peter Cardillo from Brooklyn, New York, searched the medical community for a second opinion when one of their twins, Thomas, was diagnosed with EA. Christine and Michael LoGiudice from Long Island raced for another option after an attempt at surgical repair in New York failed on their baby, Michael.
All three of these families found Dr. John Foker through different means, but they have all since reached the same conclusion: this pioneer pediatric cardiothoracic surgeon from the University of Minnesota Children’s Hospital, Fairview, changed their babies’ lives in a way that no one else could. He gave them hope, but more importantly, he gave them results.
During fetal development, the esophagus and trachea arise virtually from the same tissue bud and form into two side-by-side passageways. The esophagus leads from the throat to the stomach and digestive tract, and the trachea forms the airway between the larynx and the lungs. Development may go awry, however, and in the case of EA, a section of esophagus does not form. The esophagus ends in a blind pouch in the neck instead of connecting to the stomach, and saliva and food cannot be swallowed. The combination of EA with or without a connection to the trachea (called tracheoesophageal fistula or TEF) prevents effective swallowing and saliva pools in the mouth, compromising breathing and creating a life-threatening condition.
Esophageal atresia occurs in approximately one in 3,000 live births, and children’s hospitals across the United States repair from five to 20 of these babies each year.
For most (about 75-80 %), the two ends of the esophagus are close together and joining them is straightforward. For the rest, however, the problem is much more difficult, and the ends are so far apart they can’t easily be connected. The situation for the three patients from New York was even more serious. Virtually all the esophagus from the neck to the diaphragm was missing. For them, simply joining the ends together would be impossible.
These long-gap patients are usually treated by pulling the stomach or a piece of the colon up into the chest to establish continuity. But these repairs can have many problems: poor feeding, malnutrition, anemias, pneumonias, and inflammation of the esophagus in the neck. For the longer term, even more serious consequences are likely to develop.
To solve the problem of the missing esophagus, Dr. Foker developed a technique to stimulate the little blind upper and lower ends of the esophagus to grow so they could be joined together. The stimulus for esophageal growth should normally be provided by the skeleton as it lengthens. To mimic the signal provided by skeletal growth, traction sutures are placed in the tiny esophageal ends and the tension increased daily. The success was surprising. The ends rapidly and reliably grew. Even when no esophagus was present in the chest, within about two weeks the ends had grown and could be joined together.
“Doctors elsewhere are trying to replicate Dr. Foker’s method, but they haven’t perfected it like he has. He developed it, and he has perfected it. That’s why we wanted to come here,” says Vivianne Cardillo, a nurse from Brooklyn and mother of baby Thomas.
All babies with EA/TEF require surgical repair to correct the condition and allow proper nutrition and swallowing. Many different operations are used and sometimes performed in separate stages over a period of years. Pulling up the stomach or colon brings a host of problems. Dr. Foker’s patients usually have 2-3 growth operations over a 1-3 week period, often followed by an anti-reflux procedure. Over a span of 3-6 months, the children often have a few dilations of the esophagus, learn to eat, and may have their feeding tube removed. All of Dr. Foker’s patients, about 50 in the past 10 years, are on track to eat and swallow like other children.
“The entire EA team is driven by the mission of giving these kids the expectation of a normal life,” says Dr. Foker. “There are many members of the University of Minnesota Children’s Hospital community who justifiably take great pride in the success of the EA team.”
The LoGiudices were advised by their physician in New York not to come to Minnesota. They said Dr. Foker’s method was unfounded, not peer reviewed, and not proven. However, he has more than 50 successful cases to his credit. More importantly, their son Michael is consistently making progress and almost ready to eat real food. They aren’t regretting their decision at all. “We have met so many other parents whose kids have already had this procedure by Dr. Foker. They’re now eating normally and healthy, and best of all, they had no recollection of the operations,” says Christine. “We still have some catching up to do, but we are looking forward to that day, and we know it’s within reach.”
Doctors in New York gave Cathy and Christopher Meehan a grim 50/50 chance of success if they did the operation there, but also discouraged them from bringing their baby to Minnesota. “We had to give Christopher a better shot than 50/50. In our very first conversation with Dr. Foker, he said ‘failure is not an option’,” says Cathy. “When things seemed hopeless for us and for Christopher, he took that horrible feeling away. So we had no choice but to come to Minnesota and stay under the care of Dr. Foker. We love that man.”
The Meehans can’t say enough good things about Dr. Foker, and also the care they received in Minnesota. “It’s amazing here. People are nice and the place runs like a machine,” says Cathy. “Nothing compares to the U of M Children’s Hospital!”
