Our story began when I was pregnant with triplets and diagnosed with Twin to Twin transfusion by another hospital in Boston. I was told our girls would likely not survive, thankfully, Children’s hospital said they did not agree and referred us to MGH, to meet Dr. Michael Greene. At week 12 of my pregnancy, Dr. Greene said he would be glad to care for us and was excellent from day one. Our grils where born at MGH in 1999 weighing only 2-3 pounds, very small, but perfect.
However, in less than 24 hours the team at Massachusetts General Hospital told us that we would have a long road to go; one of the girls, Lena, was born with severe esophageal birth defects. She could not eat; she had no inlet to her stomach, and a hole in her lung, a type c fistula. We had to wait for her to gain weight from 2 to 4 LBS to have the surgery, through 8 weeks of ups and downs and with extreme hand holding the talented surgeons and nurses her known birth defects were reparied. Dr. Dan Ryan conducted her repairs.
Dr. Ryan is one of the many amazing people we met during Lena's pediatric journey. As example, one day while Lena was in the NICU, I walked in to visit her and found Dr. Ryan rocking her and speaking to her, he is an extremely talented surgeon, who has never forgotten who he treats.
At one year old as you can image we were very busy, the girls grew and flourished, but Lena always remained fragile, she became critical when one night we woke to her struggling to breathe. After a fearful 911 ride, MGH connected us with the otology pediatric surgical team at Mass Eye and Ear where they determined her esophagus was not growing. It was consistent with a child that should weigh two pounds. She was put in a medical induced coma and was in intensive care at MGH for nearly two months. In collaboration with MEEI she went through another very tough surgical repair.
This surgery was a great success and we brought her home. Surely, we would now be okay and enjoy the craziness of raising triplets.
Sadly, we had another year of unexplained illnesses and we were again seeking help. Our daughter was in a constant state of pneumonia. While at MGH for our 20th stay in one year, the Pediatric Pulmonology team introduced me to someone new at MEEI that they said could help. He was joining MEEI and he was at Newton Wesley, MGH Pulmonary said please go meet him, "today". Lena had had so many unexplained pneumonias we were now faced with the danger of her lung being permanently damaged and possibly leading to a lung transplant.
That day I was introduced to Dr. Christopher Hartnick, in coordination with MGH he performed a diagnostic bronchoscopy ASAP. She was very sick and putting her under was not without concern.
She had another birth defect, a posterior laryngeal cleft. She was slowly aspirating consistently into her lungs. Dr. Hartnick in collaboration with MGH completed the repair within weeks of meeting us, she was placed in a medical induced coma and in intensive care to heal again at MGH. Once again, her life was being protected by the extremely talented and caring team from MGH and MEEI.
The story does not end here, we have spent the last 19 years working with MGH for Lena's care. Her pediatric nurse assigned to her when she was a baby has become our life longtime family friend, every time Lena has been in the hospital, Elise Drew has helped to drive her successful care, with love and great talent. She is an incredible, compassionate, smart and dear friend. Also, due to her history we have spent years seeing Dr. Kinane, the head of Pediatric Pulmonolgy, who is also indescribable, not only because of his brilliance but because of his compassion and care. Every time we see him, he talks to us as though he is our dearest friend.
Two years ago, I ran the Boston Marathon for MEEI, to raise funds for the Pediatric Otology team, it only seems fitting that I also have the honor to run for MGH.
We are thankful every day for MGH, they are a critical component, of how our daughter has successfully endured 38 surgeries and procedures and is now attending school for pre-medical career track!
Thank you for all that you do each day at MASSACHUSETTS GENERAL HOSPITAL!!!