“I can’t believe this, but it’s happening again.” Those were the words Brant Beach residents Brian and Rachael Tretola received from a teary-eyed doctor when they found out they were expecting a baby girl in July 2013. Exactly one year before, the family had lost their first child, Jameson, to hydrops fetalis, a rare and deadly disease that, according to the National Institute of Health, occurs when abnormal amounts of fluid build up in two or more body areas of a fetus or newborn. Jameson passed away after 5½ months in utero.
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| Photo via Corinne Ruff Brian and Rachael Tretola stroll their daughter Harper,now almost 1 year old, along the Causeway Bridge to LBI. |
Despite the less than 1 percent chance of this happening again, the family’s second child, Harper, was facing the same fate. Through the ultrasound, fluid could be seen in multiple compartments of her body, including the lungs, heart, skull and skin tissues.
With only eight documented cases in the world of this ever occurring in consecutive pregnancies, the Tretolas were told Harper had a zero percent chance of survival.
But beating all odds, Harper, who is now almost 1 year old, crossed the Manahawkin Bay Bridge with her family in September as the fifth annual Causeway Bridge Walk’s designated “Hero.”
“We are now the ninth documented case in the world,” Brian Tretola told the crowd during the opening speech, held just before the start of the event.
“We all have a story. Although different, we all have one; and our story comes from our own personal journeys,” he said, fighting back tears. “Harper’s story comes from truly a miraculous journey, which has changed my family, and hopefully others, forever. ... If I can leave you with anything today, please know that God is real, and miracles do happen.”
Despite the devastating odds, the Tretolas fought long and hard for Harper’s life. Throughout the process, it was proven time and again that she is a survivor.
“We could have pulled the plug and took her off life support and let her pass. But we said, ‘As long as she’s fighting, we’re fighting,’” Brian told The SandPaper. “God kept revealing more and more things to us to just trust and believe without doubt. And here she is.
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| Photo by Brian Tretola While in the NICU, Harper's body continued to fill up with fluid. |
“It’s hard to believe in something we don’t see. I get that, believe me. We’re all used to using our five senses; we’re human. But we did see it. There are no coincidences here – none, zero.”
Their only hope, the Tretolas were told, was at the Children’s Hospital of Philadelphia. To help drain the fluid from around Harper’s lungs, which was quickly approaching her heart, doctors surgically placed two shunts in each side of her chest in utero. Harper was delivered via an emergency Cesarean section after one of the shunts slipped out and fluid again began filling up her body. She was born two months prematurely on Oct. 18, 2013.
“As Rachael was literally lying on the delivery table, one of the neonatologists came up to me and said very softly, ‘We’re going to try our best to stabilize your daughter. However, we don’t know if we’re going to be able to,’’’ Brian remembered.
Harper was immediately rushed into the Neonatal Intensive Care Unit and stabilized, but was sicker than anyone could have imagined. She was diagnosed with an absent thoracic duct, the main lymphatic pathway in the body.
“This is so extremely rare that we were told that there isn’t another Harper in the world to compare her to, and due to the lymphatic malformation, she could never eat nor thrive,” Brian said. “… As mind-blowing as it is, still in this day and age, there are still some things medically that cannot be treated, fixed or explained, and our daughter is one of them.”
When asked if there was any other place in the country or even the world to get Harper help, doctors simply said, “No.”
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| Photo via Brian Tretola Harper is finally home with her parents. |
“They looked right at us, and they said, ‘We are so sorry, but we are here. This is it,’” Brian remembered. “… The CHOP NICU deals with the sickest of the sick, or the worst of the worst. Their motto is ‘Hope lives here,’ so talk about feeling hopeless.
“It’s indescribable how those months were in the NICU,” he said. “We were told early on from our doctors that the NICU isn’t really day by day. At times it’s moment by moment. And our daughter was in fact one of, if not the sickest, babies in the NICU for a long period of time. It’s a battlefield.
“The hardest thing is it’s all babies; it’s not adults. It’s precious lives that are just born, that are struggling to fight,” he added. “Some of the babies are just so resilient, and they just fight through everything. What we witnessed Harper go through, I have to admit I couldn’t have gone through a quarter of what she went through. It was beyond anything I could ever imagine and really explain, just because it was that traumatic. There really is no other word to explain what we witnessed.”
While in the NICU, Harper coded three times, which meant her heart rate dropped to a level where doctors did not think she was going to make it. At times, her body retained IV nutrients, causing the fluid to overtake her body. Due to the amount of pain medications she was on, she even went through severe withdrawal.
“I cannot speak enough about what the neonatologists, nurses and doctors did to keep Harper stabilized and moving forward,” Brian said. “We are forever indebted to them; we love them like they are our family. But they didn’t do anything to treat her diagnosis or fix it because there wasn’t anything they could do.”
‘Crying out to God’
Unable to bear the heavy burden anymore, the Tretolas gave it up to God, “trusting and believing without doubt” that he would do what the doctors were saying was impossible: heal Harper.
It was then Harper started to turn an “impossible corner,” and the “miracle began to manifest.” After 5½ months of being on life support, she began to breathe on her own and tolerate feeds.
“The fluid began to disappear out of her body, just as we prayed that it would,” said Brian. “Along our nine-month journey at CHOP, God showed us numerous – and I mean numerous – signs that only he could do, assuring us that he was in this with us and to just trust him. So we stepped out with faith and did exactly that.”
After a particularly hard night, Brian said, he walked around the city, crying out to God and asking him for a sign that proved he was still “in this with us.” The following morning, a family member who was drawn to watching an episode of the “Today Show,” which featured Gloria Gaynor singing “I Will Survive,” noticed pink, “Pray For Harper” signs displayed in the crowd.
“I asked for a sign and literally got one,” Brian said of the instance.
While living at the Ronald McDonald House in Philadelphia, weeks after Harper was born, Brian received a picture from a friend on Long Beach Island that captured a beam of sunlight surrounding the Tretolas’ home. A similar instance occurred during Jameson’s funeral, surrounding his grave during a very overcast day the year before.
In the hospital, people even came up to the Tretolas to tell them that God was saying their daughter was going to be OK. One man, described as having tattoos all over his body, including his face, eyebrows and forehead, told Brian he needed to continue encouraging Harper to keep fighting. Lifting up his shirt, the man explained he had been shot 13 times and two of the bullets were still lodged in his chest. Although he had been pronounced dead on the scene, he said, his family continued to pray over him.
“He said, ‘When you stop believing, and when you stop telling her to fight, she will die.’ I asked him what his name was, and he said, ‘My name is Blessing.’ And he walked out, and I never saw him again,” Brian said through tears.
After that moment, Brian said, he focused on Harper’s eyes.
“Her big, beautiful brown eyes told us she was OK,” he remembered.
Meant to ‘give people hope’
Harper was discharged on July 14, about two months before the Bridge Walk. Her family said she is doing “amazingly well.”
“She’s surprising everyone, including our doctors,” said Brian. “My wife and I, we truly, truly know in our hearts that she was healed miraculously by God.
“We’ve been in the gray area for years, and we still are. They have no other explanation for it. And we know that it’s a miracle, that it’s to give people hope when they feel like they don’t have any.
“Our life has changed in so many ways,” he added. “Living through what we did with Harper, and what God has shown us through this journey, has changed our lives forever. For us to share Harper’s story with others I know now is our purpose of life. I always knew – and this is the truth, and I’m getting choked up – I always knew I was meant for something more. And this is a very personal thing. It was never to be rich, it was never to be famous, it was never even to be the chief of police where I work, or anything. I just never knew what it was. And now, after going through our journey with Harper, I know what it is now. And that’s to share the miracle of her.
“Our message is that we took a step of faith, when we were given a zero percent chance of our baby surviving,” he said. “It was at that point where I and my wife and my family literally couldn’t bear the burden anymore, and we took that step of faith, and we trusted, and we said, ‘Lord, this is now your burden to bear. We believe and trust in you without a doubt that you’re going to heal our baby.’ Once we did that, I could not be more sure of anything in my life; that’s when Harper turned a corner.
“Our message is that God is real, and his word is real, and he heals.”
Throughout the time in the NICU, Brian documented Harper’s progress with about 300 entries on CaringBridge, an online forum for people facing various medical conditions. The site allows family members and friends to receive private information and updates. To read the full entries, visit caringbridge.org/visit/harperpeliahtretola.
— Kelley Anne Essinger
This article was published in The SandPaper.
This article was published in The SandPaper.
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