Chronic Lung Disease Education and Outreach
Donation protected
Thank you for joining our fight! We are raising money for a donation to the Chronic Lung Disease program in the NIICU at the Children's Hospital of Philadelphia (CHOP). CHOP has a team of multi-disciplinary physicians that specialize in treating premature babies with Chronic Lung Disease (CLD). While preemies often struggle with respiratory issues due to underdeveloped lungs, most are adequately treated with conventional therapies available at NICUs around the country. However, some babies struggle and suffer because their lungs are so severely compromised, and they often don't survive more than a few weeks or months. If these babies do not receive an adequate level of ventilator support and related medicines, their hearts often become compromised; and that is how many babies with chronic lung disease die. Some will pass from acute respiratory failure, and others will develop pulmonary hypertension, leading to heart failure. The good news is, some babies can be saved if the proper intervention is implemented soon enough. The Chronic Lung Disease team at CHOP has made huge strides in managing and treating these sick babies, giving them the medical support they need in order to heal and grow. Unfortunately, most NICU physicians are unaware of these newer protocols, and parents are misled to think there are no other treatment options for their CLD preemies. Our campaign funds will be used to help CHOP publish their data, educate other doctors and hospitals, and create avenues for outreach and awareness in the NICU community. Please read on to learn about our twins' story, and how you can join us to help premature babies and their families.
James and Mack were delivered prematurely at 27 weeks gestation on September 11, 2014, due to James' having low amniotic fluid and being at risk for death. Mack weighed 2 pounds, James weighed 1 pound, 14 ounces. On the night of their birth, and over the next few months, we were told many times that James' lungs were too severely compromised for him to survive. The doctors at our local hospital, a well-respected level IV NICU, were using mechanical ventilation to keep him alive, but James' lungs were not progressing as expected. At that time, both boys' official diagnosis was BronchoPulmonary Dysplasia, a common respiratory condition in premature babies. Mack, however, was making good progress: he had some challenges during his 14-week NICU stay, but he followed a more traditional preemie course than his twin. The tried and true therapies used for preemies were working for Mack, but they did not work for James. We were told countless times to say goodbye to our baby, to prepare for the worst... all while James struggled, suffered, and coded multiple times. James was intubated for months (he could not breathe on his own), often times heavily sedated, and was developmentally delayed due to his diagnosis.
In January 2015, a few weeks after Mack came home from the hospital, we opted for James to receive a tracheostomy so he could be mechanically ventilated more comfortably. This was a challenge in itself, as our hospital did not commonly perform tracheostomies on babies. It took several consults with multiple ENTs, weeks to order the right equipment, and three separate trips to the OR before our hospital was finally prepared to perform the tracheostomy. James was stable for a few days following the tracheostomy, but then he started to deteriorate again. Doctors told us that although his lungs were rapidly failing, the plan was to stabilize him and send him home as quickly as possible, because our time with him was likely coming to an end.
In March, as we anxiously waited for James' status to improve, one doctor on our team suggested that as a last resort we contact the Lung Transplant Team at the Children's Hospital of Philadelphia. We had reached out to CHOP before, through our NICU doctors, but the message we received was always that nothing else could be done. And, prior to the tracheostomy, James had not been stable enough to be transported to Philadelphia. However, once James' case was escalated to the transplant department, it received more attention. Then we got the best news: the Chronic Lung Disease team at CHOP wanted to try to treat James first, before placing him in the transplant program. They sent a helicopter immediately, while he was stable enough for the ride. We kissed our boy and away he flew. We jumped in our cars and made the two hour drive to Philly, praying the whole time that our baby would arrive safely, and trying not to think about the worst case scenario.
Once we got to CHOP and saw James was stable, we were instantly aware of how differently the nurses and doctors approached his condition. First, the nurse and respiratory therapist wanted to change James' tracheostomy cannula. We panicked, as it had taken weeks for our hospital to even to get the right size cannula in stock, and the ENT doctor had been the only one to change it at the bedside. But a nurse rolled up a cart of every size and type of trach cannula, the respiratory therapist found the match for James, and the minor procedure was over before we knew it had started. We were speechless... what had taken weeks of prep by our doctors had been orchestrated in minutes at CHOP. We quickly realized that CHOP was significantly more prepared to take care of James than our hospital had been.
Next, the multi-disciplinary team of specialists that came to see James made many changes. They increased his ventilator settings dramatically, they started new medications, they changed the way we were feeding him, they talked about potential scenarios that we had never heard of. Most importantly, the doctors said, "we've seen worse... we can help him." Just hours before, only 150 miles away, our doctors had told us they had done all they could and James was just simply not going to live. Now, we had hope.
CHOP could not offer a cure, but they were certainly more experienced at helping babies like James. While Mack had just needed temporary support while his lungs grew, James was going to need long-term support; we learned that there is a huge difference in how the CHOP NIICU treats preemies like our twins. If we had moved James to CHOP sooner, he may have been spared months of suffering. Instead of what became a 13 month hospitalization, he may have been home sooner with us, allowing him to develop more appropriately. Perhaps our family wouldn't have been separated for months, as Mack and Mom moved to Philadelphia to be near James, and Dad spent half the week in North Jersey for work. Maybe we could have saved tens of thousands of dollars by not needing a second apartment in an expensive city, not to mention months of hospital bills. Unfortunately, we have met many families along our journey whose stories do not have a happy ending. We often wonder, what if they had gotten their babies to CHOP? What if their doctors had done a few things differently? What if a simple phone call or email could have changed the course of their baby's life?
James and Mack are now turning 5 years old, and James continues to face lingering challenges from his chronic condition. But, he is smart, happy, and grows stronger every day. We hate to think of it, but our boys may never have been home together at all if it weren't for CHOP. And so, in honor of their birthdays, we want to give back. We are pledging a donation to CHOP, to be used specifically for Chronic Lung Disease education and outreach. If CHOP can spread the word about its treatments, therapies, and practices, then other physicians and hospitals around the country will learn how to save babies like James. Thank you for your interest in our passion, as we celebrate our twins by using their story to help others.
James and Mack were delivered prematurely at 27 weeks gestation on September 11, 2014, due to James' having low amniotic fluid and being at risk for death. Mack weighed 2 pounds, James weighed 1 pound, 14 ounces. On the night of their birth, and over the next few months, we were told many times that James' lungs were too severely compromised for him to survive. The doctors at our local hospital, a well-respected level IV NICU, were using mechanical ventilation to keep him alive, but James' lungs were not progressing as expected. At that time, both boys' official diagnosis was BronchoPulmonary Dysplasia, a common respiratory condition in premature babies. Mack, however, was making good progress: he had some challenges during his 14-week NICU stay, but he followed a more traditional preemie course than his twin. The tried and true therapies used for preemies were working for Mack, but they did not work for James. We were told countless times to say goodbye to our baby, to prepare for the worst... all while James struggled, suffered, and coded multiple times. James was intubated for months (he could not breathe on his own), often times heavily sedated, and was developmentally delayed due to his diagnosis.
In January 2015, a few weeks after Mack came home from the hospital, we opted for James to receive a tracheostomy so he could be mechanically ventilated more comfortably. This was a challenge in itself, as our hospital did not commonly perform tracheostomies on babies. It took several consults with multiple ENTs, weeks to order the right equipment, and three separate trips to the OR before our hospital was finally prepared to perform the tracheostomy. James was stable for a few days following the tracheostomy, but then he started to deteriorate again. Doctors told us that although his lungs were rapidly failing, the plan was to stabilize him and send him home as quickly as possible, because our time with him was likely coming to an end.
In March, as we anxiously waited for James' status to improve, one doctor on our team suggested that as a last resort we contact the Lung Transplant Team at the Children's Hospital of Philadelphia. We had reached out to CHOP before, through our NICU doctors, but the message we received was always that nothing else could be done. And, prior to the tracheostomy, James had not been stable enough to be transported to Philadelphia. However, once James' case was escalated to the transplant department, it received more attention. Then we got the best news: the Chronic Lung Disease team at CHOP wanted to try to treat James first, before placing him in the transplant program. They sent a helicopter immediately, while he was stable enough for the ride. We kissed our boy and away he flew. We jumped in our cars and made the two hour drive to Philly, praying the whole time that our baby would arrive safely, and trying not to think about the worst case scenario.
Once we got to CHOP and saw James was stable, we were instantly aware of how differently the nurses and doctors approached his condition. First, the nurse and respiratory therapist wanted to change James' tracheostomy cannula. We panicked, as it had taken weeks for our hospital to even to get the right size cannula in stock, and the ENT doctor had been the only one to change it at the bedside. But a nurse rolled up a cart of every size and type of trach cannula, the respiratory therapist found the match for James, and the minor procedure was over before we knew it had started. We were speechless... what had taken weeks of prep by our doctors had been orchestrated in minutes at CHOP. We quickly realized that CHOP was significantly more prepared to take care of James than our hospital had been.
Next, the multi-disciplinary team of specialists that came to see James made many changes. They increased his ventilator settings dramatically, they started new medications, they changed the way we were feeding him, they talked about potential scenarios that we had never heard of. Most importantly, the doctors said, "we've seen worse... we can help him." Just hours before, only 150 miles away, our doctors had told us they had done all they could and James was just simply not going to live. Now, we had hope.
CHOP could not offer a cure, but they were certainly more experienced at helping babies like James. While Mack had just needed temporary support while his lungs grew, James was going to need long-term support; we learned that there is a huge difference in how the CHOP NIICU treats preemies like our twins. If we had moved James to CHOP sooner, he may have been spared months of suffering. Instead of what became a 13 month hospitalization, he may have been home sooner with us, allowing him to develop more appropriately. Perhaps our family wouldn't have been separated for months, as Mack and Mom moved to Philadelphia to be near James, and Dad spent half the week in North Jersey for work. Maybe we could have saved tens of thousands of dollars by not needing a second apartment in an expensive city, not to mention months of hospital bills. Unfortunately, we have met many families along our journey whose stories do not have a happy ending. We often wonder, what if they had gotten their babies to CHOP? What if their doctors had done a few things differently? What if a simple phone call or email could have changed the course of their baby's life?
James and Mack are now turning 5 years old, and James continues to face lingering challenges from his chronic condition. But, he is smart, happy, and grows stronger every day. We hate to think of it, but our boys may never have been home together at all if it weren't for CHOP. And so, in honor of their birthdays, we want to give back. We are pledging a donation to CHOP, to be used specifically for Chronic Lung Disease education and outreach. If CHOP can spread the word about its treatments, therapies, and practices, then other physicians and hospitals around the country will learn how to save babies like James. Thank you for your interest in our passion, as we celebrate our twins by using their story to help others.
Organiser
Kelly D'Agostino
Organiser
Montvale, NJ