Dylan's Pajama Party

This is the story of our little boy Dylan who chose to fight through some of the most difficult times of his short life and taught us all to have hope. Hope and trust the prayers of our community, family, friends and the medical staff of The Children's Hospital of Philadelphia that provided the care for a patient who would challenge them every step of the way.        

Mom’s Story

On August 9th, 2016, my wife and I discovered we were expecting. Little did we know this was the beginning of a long journey to come. Three months into her pregnancy, my wife started to experience unusual pains that grew in intensity as time went by. Within a few days, my wife was diagnosed with a condition known as placenta previa-percreta, a rare condition which can lead to significant morbidity and potentially mortality. On January 12, 2017 our biggest fear became a reality, my wife was checked into the emergency room due to extreme hemorrhaging and remained hospitalized until the birth of our twin boys on January 16th. During delivery she suffered extreme trauma with severe blood loss. Her condition was dire and would result in her receiving life resuscitation procedures, blood transfusions (37 pints) and three surgeries within 48 hours. As a father this was a bittersweet moment. On one hand happy for the birth of our twins, on the other, devastated not knowing what the outcome of my wife’s condition would be. My wife remained on life support for a week and a half in the ICU.  She was finally reunited with her babies two weeks after delivery once the breathing tube and ventilator was removed and the ICU team felt she was healthy enough to be transported to her babies’ bedside in the NICU.

Dylan’s Story 

Baby Dylan and Baby Noah were delivered at just 27 weeks gestation bringing them into this world at an extreme premature date. Our twins are what is known as Mono-amniotic twins whereby they share the same placenta and amniotic sac. In our case Baby Noah had the lion’s share of the amniotic fluid leaving Baby Dylan with little to develop his lungs. At two weeks of birth, Dylan was diagnosed with a condition known as Necrotizing Enterocolitis (NEC). Necrotizing enterocolitis is a serious disease that occurs when the intestinal tissue become damaged and begins to die. It most often affects premature infants. This condition heightened his already critical condition due to underdeveloped lungs. At this point my wife and I made the decision to transfer Baby Dylan to the Children’s Hospital of Philadelphia for their expertise in cases related to NEC and Infant Chronic Lung Disease (CLD). 

Dylan was transported to CHOP in early March 2017 and remained hospitalized for chronic lung disease and digestive issues. Dylan spent a total of 357 days in the NICU. He endured several life-threatening events that at times questioned his survivability from a medical standpoint. He suffered through multiple surgeries, severe feeding intolerance, extreme body edema (swelling of his body) and chronic respiratory failure causing him to be on respiratory support from birth until the age of two. However, during this time Dylan was the fighter we always expected him to be.  He has proven to go against all odds. 

Dylan has been followed by the Newborn and Infant Chronic Lung Program in the CHOP NICU for his chronic lung disease.  Chronic lung disease of infancy, also called bronchopulmonary dysplasia (BPD) is a serious complication of prematurity. Each year, more than 15,000 babies, born prematurely like Dylan, are diagnosed with BPD. Survivors with this disease have serious consequences ranging from lowered lung function to poor growth and development and may lead to impaired social functioning of the patient and family. Unfortunately, there is currently no cure for Infant CLD and the impact of this devastating disease on the patient and his/her family can last for many years.

In late July 2017, Dylan’s medical staff determined that he would need prolonged ventilator support and a tracheotomy would give him the best breathing support while enabling him to develop as normal as possible. Dylan did much better under the watchful eye of his medical team at CHOP. He learned how to live with a tracheostomy and he was finally able to reach a major milestone of full feeds via a feeding pump after many, many months. We still have a long road ahead and hope that time will heal his body as he continues to fight thru his condition. 

Newborn and Infant Chronic Lung Program (CHOP)

We look forward to partnering with Dr. Huayan Zhang and the Children's Hospital of Philadelphia in continuing advancements for the treatment of CLD. The Newborn and Infant Chronic Lung Disease Program at CHOP is one of the top centers in the nation devoted to meeting the growing clinical and research needs of infants with CLD. Dylan’s progress could not have been possible without the commitment CHOP’s Infant Chronic Lung Team has demonstrated throughout our journey at the NICU. Our family is thankful in so many ways for this team’s professionalism and dedication in treating Dylan. My wife and I are committed in paying it forward by dedicating our time and efforts to assist the Newborn and Infant Chronic Lung Program at CHOP in their fight against Infant CLD thru our fundraising project “Dylan’s Pajama Party”. We strongly believe there is hope in someday finding a cure for newborns and infants who suffer from this disease. We feel this project has the potential to have a dramatic positive impact on thousands of infants like our baby boy Dylan that suffer from CLD by partnering with local school districts and businesses to celebrate Dylan's Pajama Party. A fun way for students to wear pajamas at school and employees to dress down at work to raise awareness for Newborns and Infants with CLD.

100% of all contributions are tax deductible and will go directly towards the Newborn and Infant Chronic Lung Disease Program, Division of Neonatology at CHOP.

Thank you for reading about this cause and our wonderful little boy Dylan.  Hopefully, together we can help raise awareness and promote a better tomorrow for Infants battling Chronic Lung Disease.

*UPDATE*

Picture of our boys on their 4th Birthday. We have been blessed to see them grow into healthy toddlers.  It has not been an easy journey but Dylan (left) continues to thrive alongside his brother Noah. His trach was removed almost two years ago.  

Update 10/23/2022

Dylan continues to conquer his issues with chronic lung disease and feeding. However,  within the past year he has also been diagnosed with Autism and severe Sensory Processing Disorder (SPD). We trust our little fighter will get thru these new challenges as well. Thank you for reading his story.

The twins 5th  Birthday

Update 10/21/2023

Dylan continues to have his challenges with Autism but also continues to fill our home with happiness and hope alongside his twin brother Noah. We wouldn't be here today if not for the amazing staff of CHOP’S CLD department.

The twins 6th Birthday