Patricia Ritter
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In 1967 my husband, Michael, was born in Reading PA. Although he was full-term and full sized, he immediately had difficulty breathing. He was taken by ambulance to Children's Hospital of Philadelphia where he was trached and put on a ventilator. His Doctors--which included Dr. John J. Downes and Dr. Sylvan Stool--work tirelessly with him. When others said they should give up and allow him to die saying they would create an adult vegetable, they continued on believing that there was reason to believe he would heal, grow and do well. At 4 months of age he was sent home with a tracheotomy in place. My Mother-in-Law tells the stories of how unprepared she was for this, and what little training and assistance was available for her. After about 18 months, Michael was decannulated. Today is a perfectly normal man (what a lovely vegetable he turned out to be :-). He has some adverse reactions from steroids to muscle development in his legs, but that is minor. (Also see: Michael's Page)
In 1996 I gave birth to our second daughter, Patricia. Things with her were very good. She was born at 37 weeks, but she was perfect and very healthy. At about 4 months I started to hear what I considered a wheeze. We ran the gamut with food allergies until I stopped breast feeding all together. Formulas made no difference. I was finally told that she had large tonsils, so maybe that was the cause of her breathing sounds. As she grew the noise continued, and at night it was such loud snoring!
Finally at the age of 4, I questioned our P.A. again. She sent us to a local ENT, who agreed she had large tonsils, but that shouldn't cause what we were hearing. She was then sent back to our Pediatrician , who thought maybe it was asthma. We treated her for this for about one month, with no real change. We were then sent to a pediatric ENT. There we first were introduced to the diagnosis of VCP. WHAT A SHOCK! After hearing his solutions to the situation, we asked for a second opinion. We were referred to Children's Hospital of Philadelphia. There we became a patient of Dr. Ian Jacobs. Dr. Jacobs agreed that the vocal chords were blocking her airway, but that they weren't technically paralyzed.
Starting in June of 2001 we have had a serious series of operations. First she had her tonsils removed to prepare the airway for major surgery. In August of 2001, she underwent and LTP (Laryngotracheoplasty). Because she was not trached at this time, they used an intabation tube as a stent for this procedure and she spent 14 days in a drug induced coma. At the end of this time she was extubated and everything looked great, we were so hopeful! Unfortunately, within one week of leaving the hospital things were not going well. On September 12, 2001 her O2 levels were dropping badly during physical therapy (to regain muscle after the prolonged hospital stay). Patricia was one of the very first civilians in the air that day--NATIONWIDE--as she was life flighted to Philadelphia. Interestingly enough, Dr. Jacobs was stuck in Colorado at a conference of ENT's! Over the next several months her airway more or less swelled shut, making breathing more and more difficult. On Feb 25th, 2002 she was trached.
On Feb 28th her trach completely obstructed and she went Code Blue, She endured chest tubes and a few more days of forced sleep. Over the last few years we were finally able to get the swelling down and conclude that she was also suffering from adenoid prolapse. In July of 2003 she underwent surgery for this, in an attempt to clear the airway and remove the trach. By September her airway seemed to be closing again, and we had more hospital time. Just this December Dr. Jacobs removed polyps from her airway, which he believed may have been caused by the stent used during the adenoid work.
At this present time we are waiting to see if we have a stable airway to consider decannulation...although it isn't looking great yet.
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As a side note. Dr, Downes is still affiliated with CHOP. During the summer of 2001 Michael and he reunited for the first time in approximately 30 yrs! Dr. Downes has also worked with Dr. Jacobs over the years with consultations.
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