Last Tuesday, Harvey and Jessie Vazquez of Cherry Hill celebrated the first birthday of their twin sons, Dylan and Noah.
This was more than just an ordinary celebration for the Vazquez family. A year earlier, the family was in turmoil when Jessie had to be rushed to the hospital. Jessie had recently been diagnosed with placenta previa percreta, a rare and potentially life-threatening condition where the placenta begins to grow through the uterine wall and potentially attaches to organs. Jessie was rushed to the hospital after she began hemorrhaging in the family’s bathroom.
Jessie gave birth prematurely to Dylan and Noah on Jan. 16, 2017, but there was no guarantee she would live after losing a large amount of blood. On top of that, Dylan was born with underdeveloped lungs and, at 2 weeks old, was diagnosed with necrotizing enterocolitis, a condition found in premature babies where the walls of an infant’s intestines begin to die off, creating major digestive issues.
After facing months of challenges and hundreds of hours inside hospitals, the Vazquez family was together at home for the first time on Jan. 11, as Dylan was finally discharged after nearly a year in the hospital. The family credits faith, outstanding care from doctors and nurses and the support of their community for making it through the past year. Now, they are hoping to give back through a new nonprofit organization.
A difficult pregnancy
Harvey and Jessie remember the joy they felt in August 2016 when Jessie discovered she was pregnant. The couple, who already have two sons, Brandon, 14 and Jaden, 12, were excited to bring a newborn home. Little did they know, they would have two little ones in their life.
“They called me in and she was crying,” Harvey recalled of Jessie’s first ultrasound appointment of the pregnancy. “The reason she was crying was she already knew we were having twins.”
Discovering they would have two boys was a pleasant surprise for the Vazquez family. What wasn’t pleasant, however, was the way Jessie began to feel a couple months later.
“It was a smooth ride until I was about 15, 16 weeks,” Jessie said. “That’s when I began feeling severe pain.”
“Everybody kept telling us, even doctors, that it was twins, it was going to be different,” Harvey said. “But she said, something’s not right.”
During an appointment on Nov. 25, 2016, Jessie was diagnosed with placenta previa. The Mayo Clinic describes placenta previa as a condition where the placenta partially or totally covers the cervix of the mother, potentially causing severe bleeding during pregnancy and the delivery.
“Placenta previa was the initial diagnosis,” she said. “As my pain started to get intense as they were growing in my belly, first thing he did was buy me a recliner, because I couldn’t lay down.”
Jessie’s condition was actually an even more rare type of the disease called placenta previa percreta, where the placenta attaches itself to the bladder.
“It has a high percentage of mortality for those cases because what happens is they have to be delivered in C-section and they lose so much blood that they can’t save mom most of the time,” Harvey said.
On Jan. 12, 2017, Harvey was cooking dinner for the family on the grill when Jessie went to use the bathroom.
“She started hemorrhaging,” Harvey said. “I rushed her to the hospital and they admitted her immediately.”
Four days after being admitted, doctors decided they had to prematurely deliver the twin boys. During delivery, Jessie suffered severe blood loss and her condition became critical.
“At the point when (the doctor) came out, (Jessie) had one surgery and she said they were taking her to the ICU now. She’s not going to be able to talk to you,” Harvey said. “When I saw my wife, that was the worst.”
Jessie needed to have life resuscitation procedures, multiple blood transfusions and three surgeries in a span of 48 hours. Things were so dire at one point, doctors asked Harvey to contact family members because they were unsure Jessie would live.
“Finally, after about three days of waiting, they told me she was out of the dark,” Harvey said.
Two weeks after the birth of the twins, Jessie was in a good enough condition to meet them. She would be sent home under the care of a nurse. Jessie continued to recover from her life-threatening condition, but more medical issues were about to enter the Vazquez family’s lives.
Dylan’s journey at CHOP
Dylan and Noah were born 27 weeks after they were conceived. The twins were monoamniotic and shared the same placenta and amniotic sac. For the twins, Noah ended up getting more of the amniotic fluid during development. Dylan’s lungs would be underdeveloped and he would be diagnosed with bronchopulmonary dysplasia, commonly known as infant lung disease.
Dr. Huayan Zhang, medical director of Children Hospital of Philadelphia’s Newborn and Infant Chronic Lung Disease Program where Dylan was transferred to from Cooper, said infant lung disease is a common condition for premature babies because their lungs aren’t fully developed due to their early birth. With more premature infants surviving childbirth each year, there have been an increasing number of infant chronic lung disease cases.
“Because we can save more and more of these ultra-premature infants, this chronic lung disease has become more of a problem,” Zhang said. “A lot of these babies in the past would not have survived.”
In addition, some of the options doctors use to treat the disease, such as ventilator support and oxygen, actually injure the lungs further. Infants can also suffer from pulmonary hypertension due to issues with the lung vessels, bone disease, small airway disease and more.
On top of his lung condition, at 2 weeks old, Dylan was also diagnosed with a serious condition called necrotizing enterocolitis. With this disease, an infant’s intestines are dying due to the invasion of bacteria. It is found mostly in premature infants and can be fatal.
“They went through weeks of trying to feed him,” Harvey said. “He wasn’t feeding.”
Because of Dylan’s condition, Harvey and Jessie decided to transfer him to CHOP, where they hoped they would have more luck feeding him through the hospital’s breastfeeding and lactation program as well as caring for his lung condition. Noah remained in the neonatal intensive care unit at Cooper Hospital until he was permitted to go home in early March.
“When (Dylan) got to CHOP, he was in the regular NICU for a week and a half,” Harvey said. “They decided his chronic lung disease was so severe that after about a week and a half, they decided to assign their chronic lung team to him.”
Babies in CHOP’s chronic lung disease program are typically severe cases. Zhang said the average stay for an infant in the lung team’s NICU is a few months. The goal in the NICU is for doctors to stabilize the babies’ respiratory before having them transferred to the progressive care unit.
There were plenty of ups and downs during Dylan’s time at CHOP. Four times, a Code Blue was called where a team had to help resuscitate Dylan. Despite these challenges, doctors were able to stabilize Dylan’s breathing within a few months and get him started with a tracheal tube. During this time, Jessie and Harvey began training to take care of Dylan when he would eventually come home. They took numerous classes on topics such as infant CPR, emergency tracheal tube simulations, tracheal tube change, stoma care, gastrotomy tube care and change, bedside training and emergency respiratory response.
Even after Dylan’s breathing was stabilized, he remained in the NICU because doctors were still unable to feed him.
“For Dylan’s case, his feeding issue was quite a big deal,” Zhang said. “It’s part of the reason he stayed with us for so long.”
“They couldn’t figure out how to feed,” Harvey said. “When they took an X-ray of his stomach, they discovered his stomach was the size of a walnut.”
In most cases of necrotizing enterocolitis similar to Dylan, the infant will have parts of the dead intestines removed. However, doctors decided to try to feed Dylan through the intestines first, something Harvey said they had not done before. Harvey said a miracle then took place.
“When they started giving him breast milk into his intestines, things started moving,” he said.
As feeding through the intestines began to work, doctors slowly transitioned to feeding Dylan through the stomach, which was also a success. Today, Dylan receives a full feed by way of a feeding tube.
“(The doctors) said they can’t explain how it happened,” Harvey said. “They said any child with NEC is going to have a portion of his intestines that’s going to die off and we normally have to go in to do surgery.”
In December, Dylan was finally transferred to PCU, with an eye toward sending him home. Dylan’s stay in PCU was shorter than normal because he previously spent close to a year in NICU between Cooper and CHOP.
“He stayed in the NICU longer than other babies and the parents were very good with training, so he didn’t stay as long as progressive,” Zhang said.
Before Dylan came home, Harvey and Jessie also had to spend 24 hours caring for Dylan at CHOP. The two completed this task on Jan. 8. Jessie went above and beyond with the 24-hour care, opting to stay with Dylan at the hospital until he was discharged on Jan. 11.
Dylan is now at home with the rest of his family. The Vazquez’s former dining room was transformed into Dylan’s room. Dylan has a ventilator and tracheal tube to give him breathing support. If Dylan runs into any issues with breathing, oxygen is available to assist him. The Vazquez family also has portable oxygen tanks in case Dylan needs it while he’s out of the house. Dylan also remains on a continuous feed via a feeding tube.
“He will feed for about seven hours and then we give him a break for about an hour,” Harvey said. “At some point, we’ll start condensing that where he feeds like a normal baby.”
Harvey and Jessie finally feel a sense of calm returning to their lives with Dylan home. They are now shifting part of their focus on giving back to those who helped keep Dylan alive.
Giving back
Harvey and Jessie both say they couldn’t have gotten through the past year without the help of many people. Some of the help came from their neighbors and other community members in Cherry Hill.
“They did a food chain,” Jessie said. “They fed our family for two months.”
“The best decision we ever made was to move to this community five years ago,” Harvey said. “They all came together. They knew what we were going through. They supported us. They took care of our kids.”
The doctors and nurses played a major role in helping Dylan through the past year. Jessie talked of how much of a support the staff at CHOP was.
“The nurses in the NICU were unbelievable,” she said. “Every single one, we love them dearly. I love them to death. They became our family, they really did.”
The Vazquez family has also developed a very close relationship with Zhang and is partnering with her on a new venture. As Dylan’s condition improved, Harvey began to think of ways to give back to CHOP’s Newborn and Infant Chronic Lung Program. He began searching for organizations that raise money for chronic lung disease. What shocked Harvey was he couldn’t find one. Zhang also said she didn’t know of an organization dedicated specifically to infant lung disease. So Harvey decided to start his own foundation named Dylan’s Pajama Party.
“I never intended to take on a project like this,” Harvey said. “But I feel like I need to pave a way for others that are going through this.”
Harvey hopes to have Dylan’s Pajama Party partner with local school districts and businesses to raise money for CHOP’s Newborn and Infant Chronic Lung Disease Program.
“The idea is that kids will be able to wear pajamas for a day at school or maybe there’s a dress down day at work in order to bring awareness to newborn infant chronic lung disease,” Harvey said.
Zhang said the chronic lung disease program at CHOP doesn’t typically get a lot of donations and noted the disease itself doesn’t get as much publicity as adult diseases. She feels Dylan’s Pajama Party will serve not only as a way to raise funds for CHOP’s program, but also as an advocate for spreading the word about the disease and as a support for families.
“It’s spreading the word to have people know the difficulties the babies go through and the families go through,” Zhang said.
Dylan’s Pajama Party is in its infancy. Harvey is preparing to create a website and logo for the organization. He has met with Cherry Hill school officials about doing a fundraiser and is planning to meet with local businesses and Camden City school officials as well. The family has also received a helping hand from Alex’s Lemonade Stand and Build Jake’s Place with getting the foundation off the ground.
For now, the Vazquez family is happy to have their twin boys together at home. They hope Dylan’s lungs continue to develop and improve, though the disease could affect him for a number of years.
“It was a really comforting time, just to see him alive,” Harvey said. “He still needs the support on the machine, but just to have him home, he’s surrounded by people all the time and mom is on top of him 24–7.”
For more information or to donate to Dylan’s Pajama Party, visit its fundraising page at https://chop.donordrive.com/index.cfm?fuseaction=donorDrive.personalCampaign&participantID=58718 or its Facebook page at www.facebook.com/dylanspajamaparty.
