Updated: Jul 19
Landrie was born full term with no major health complications. Her parents noticed noisy breathing when she was about a month old along with reflux
symptoms, and she was prescribed reflux medicine. The reflux got better but the noisy breathing continued.
One day, Landrie (almost 4 months old) was in her mother’s arms and when her noisy breathing progressed, she had difficulty breathing and turned blue. She then stopped breathing and required CPR. Landrie was diagnosed with Laryngomalacia
(floppy larynx). The doctor tried to control it by increasing her reflex medications, however, one week after discharge, she was readmitted for respiratory distress. It was at this time, the doctors suggested a Supraglottoplasty procedure to correct the Laryngomalacia. During the surgery, the surgeons found a severe compression on her trachea that they could not pass the scope past. A CT scan confirmed the innominate artery was severely compressing her trachea. Now 7 months old, Landrie required an Aortopexy procedure to move her aorta and innominate artery to the sternum.
Chronic cough and congestion
Over the next few months, Landrie struggled with gastroparesis (slow emptying stomach) and weak mouth muscles which made eating and growing a difficult process. Her breathing was good until the fall/winter months, when she started having more frequent respiratory distress episodes and lung infections. In January, Landrie’s ENT referred her to a Pulmonologist. The Pulmonologist watched the videos of Landrie, in which she would make a “honking noise”, and said it sounded like her
trachea was collapsing and recommended a bronchoscopy. In addition, she also had a chronic cough and congestion that never got better.
Now 19 months old, Landrie was ordered a triple scope with a lavage by her pulmonary doctor. At this time, her ENT removed her adenoids due to enlargement and obstructive sleep apnea. The triple scope revealed that her airway was fine other than the mild compression still left from the innominate artery. Later that evening, Landrie became very ill, and developed pneumonia from the procedure “stirring up bacteria”. Testing revealed Landrie had three bacteria and two viruses in her lungs. As a result, she was put on antibiotics.
Your child's symptoms are "normal"
The antibiotics not only helped the immediate needs, but Landrie’s parents noticed her chronic cough was also getting better. A double win! Or so they thought. A few days after finishing her antibiotics, the cough and congestion returned. After many doctor’s visits and consultations, Landrie’s parents were not given answers or treatment solutions that helped. At one point, Landrie’s parents were told this was “normal and they wouldn’t see improvement until she was in 1st or 2nd grade”! Still persistent, Landrie’s parents completed additional testing (allergies, immunology, CF) to rule out other conditions. All came back fine.
Landrie’s mom turned to Facebook support groups to help navigate and find treatment and comfort for Landrie. Her search led her to Dr. Jennings, of Boston Children’s Hospital. She immediately sent the records to Dr. Jennings and a short while later had a phone consult. Dr. Jennings suspected Landrie had Tracheobronchomalacia, and her previous medical team(s) misdiagnosed her.
Once in Boston, Dr. Jennings found her trachea and brochials were collapsing both with regular breathing and coughing. They also found Landrie’s previous Aortopexy had failed and her lungs were filled secretions. Dr. Jennings recommended a Posterior Tracheopexy and Descending Aortopexy. Surgery was completed by Dr. Jennings; Landrie had a common poster operative complication of a narrowing esophagus that required subsequent dilations.
Landrie still suffers from other medical issues, but her breathing is much better. She may continue to have a harder time with illnesses than most kids, but right now, she is breathing easy. Her parents cannot thank Dr. Jennings enough!