Updated: Aug 12, 2020
Our daughter Lauren was born in August 2017. I had a slightly complicated
pregnancy with polyhydromnios at the end of pregnancy, and preeclampsia. Lauren was delivered via induction at 37 weeks due to the preeclampsia. We had no idea there were going to be any issues leading up to her birth. As soon as she was born, I knew there was a problem, the nurses whisked her away to the isolette to start monitoring her because of breathing difficulty and low oxygen level. I got to hold her maybe a minute total, before the NICU transport team came to pick her up about 2 hours after she was born and take her to the local children’s hospital. When she arrived at the NICU, the doctor found out, within the first 24 hours, that she had Esophageal Atresia and Tracheoesophageal Fistula Type C, and would need surgery as soon as they were able to schedule an OR and plan the surgery out. She had surgery at 2 days old, and had a great recovery, and we went home at 2 weeks old with what we thought was a fixed problem.
Lauren always had noisy breathing, but didn’t require oxygen and didn’t have any major concerns until she got RSV at 3 months old and was in the hospital for 8 days. It was a very scary time and the first time we actually learned about her potential for life threatening complications from any kind of respiratory illness. From there, there was a lot of appointments and frustration, we went to two different children’s hospitals and didn’t feel like we were being heard with our concerns that her respiratory issues were a real problem. At one of the hospitals, Lauren had a bronchoscopy done and they confirmed a diagnosis of slight Tracheomalacia. After more rounds of antibiotics, steroids, and hospitalizations than I can even count, we came across the team at Boston Children’s Hospital right around her first birthday. We were hesitant at first because her doctors assured she was going to grow out of this, and when we told them about our interest in Boston they asked us why we’d want to go there, as if there was no need because she wasn’t “that bad”. That was the last visit with that team of doctors, and we felt like from that point forward we had to take her care into our own hands.
I called Dori in Boston and honestly for the first time in this whole journey, I felt like I was understood and my concerns were legitimate, and that there was a real problem that was not being addressed effectively. We worked on getting Lauren’s records and imaging sent to Boston Children’s. We had to cancel her first clinic visit due to illness, and rescheduled in January 2019, after working closely with Boston’s Pulmonology NP to get Lauren healthy enough to even be under anesthesia. She had her first visit in Boston and a triple scope done, and the findings were what we as her parents knew, and what the doctors back home had told us wasn’t a problem. She had severe Tracheobronchomalacia , with a complete collapse when coughing, which was preventing her from clearing any secretions from her lungs, which was making her almost constantly sick. Along with that, each time she was getting sick by now was getting progressively worse, with more frequent hospital visits, almost every time resulting in hospitalizations and ICU stays. The team in Boston recommended Lauren was a candidate for the Posterior Tracheopexy, a major surgery to help open her airway. We were so conflicted, this was such a major surgery, which we knew she absolutely needed or we would possibly have a dire situation if she was sick again.
In February 2019, shortly after getting home from Boston, it was a very scary and stressful time for our family, with Lauren getting sick on Valentine’s Day. She was in ICU, sicker than she’s ever been, I called Boston’s Pulmonary Nurse Practitioner Leah from the waiting room of the ICU. I was frantic, the doctors were crossing options of what to do off their list quickly, and we’d been in enough of these situations to know when things weren’t going well. Leah calmly and precisely went through everything with me, and recommended a change in her plan of care, and it helped, and Lauren started getting better. We scheduled the Posterior Tracheopexy 6 weeks out from that hospitalization, knowing that it was now very necessary. We drove from Ohio to Boston and Lauren had surgery in April 2019. She had some complications post op, but they took amazing care of her. She had a Posterior Tracheopexy, a descending Aortopexy, a rotational esophagoplasty, removal of a tracheal diverticulum, an Esophageal strictureplasty, and removal of a large cyst from the mediastinum. Her team was Dr Hamilton, Dr Jennings, Dr Zendejas, and Dr Manfredi.
She is doing amazingly well, I say this with all the gratitude any parent in our situation could possibly have. Her breathing is vastly improved, so much that it’s hard to imagine how she was before she had surgery. Her eating is a bigger improvement than I ever thought was even possible. I can’t put into words how grateful we are to the Boston team, they truly gave her a life that we weren’t sure would be possible.