This morning Belinda and I had a zoom visit with Dr. Timothy Kane, the Division Chief of General and Thoracic Surgery and Program Director of the Pediatric Surgery Fellowship Program in the Joseph E. Robert, Jr. Center for Surgical Care at Children’s National Hospital in Washington, DC.
Dr. Kane was really nice and helpful, and answered the question I’ve been struggling to get answered for so long!
I told him how I had read that many children with Ehlers-Danlos (if that is what Belinda has) have slow emptying of the esophagus and asked if Belinda could actually be experiencing that, but it was mimicking achalasia on the tests, and if it was that, if the POEM surgery was still the best option.
And he didn’t raise his voice, he didn’t talk over me without answering my question, he didn’t do any of that! He said it was a good question. And then he answered it. Amazing.
The doctors at Children’s National have treated patients with Ehlers Danlos, and those patients that aren’t experiencing achalasia pass both the manometry and Endoflip tests. Belinda did not pass either for several reasons, including the fact that the tests show her sphincter is tight. Her esophagus is also dilated because it is getting stretched by food that cannot get down, but in Ehlers Danlos patients, the sphincter is not tight and the esophagus is not dilated.
He said that although achalasia and Ehlers Danlos are not related, he has treated a few patients that have both. Those patients may take longer to heal after surgery, but he said that was really just for open surgery, not for endoscopic surgery like POEM.
Belinda also had a question, asking if she would be able to do backbends and things like that as a competitive dancer. She had concern that her stomach contents might back into her esophagus after surgery if she attempted those tricks. Dr. Kane said it shouldn’t be a problem at all. He has treated other athletes (he mentioned hockey players, wrestlers, and football players) and they have not had issues like that.
I asked if he thought there was any other reason to delay the surgery to wait for the genetics testing results, and he said he did not. So we’re moving ahead!
They are scheduling surgeries around April 17 right now. Belinda’s dance competitions for the year will finish on April 21, so that week will probably be when we schedule!
Very scary but Belinda is excited to be able to eat and drink normally again. And her first time in a plane! Also scary for me but exciting for her, ha ha!