A Miracle and Inspiration at Boston Children's Hospital: Jace Perkins - World Autism Awareness Day - The Haute Life

To be thankful when things don’t go as planned is challenging. It’s especially challenging during the birth of a child; it requires grace, strength, and the ability to accept that life doesn’t always go the way you expected.

The Perkins family experienced this first hand when their son was born at just 25 weeks. This Thanksgiving, we’re bringing you a story that has many angles of gratitude. Being thankful for family, for caregivers, for the miracle of life, and mostly for the big inspiration that comes in the tiny package of Jace John Perkins.

For many, becoming a parent is a life-long dream. In 2010, newlyweds Jamie Perkins and Melyssa Misci were eager to start a family. Melyssa was a natural born mother. Always so caring and patient, as a dance school teacher, she’s been nurturing and tending to children for years.

But, just like for many couples, the gift of a child didn’t come easily. And so, Melyssa went through fertility treatments. In July of 2013, they learned Melyssa was pregnant. Being the first grandchild, everyone was over the moon with excitement.

The day after Christmas Melyssa, woke up not feeling so great; she had a few cramps. But, she had been running around preparing for the holidays and assumed she was just a little run down. As part of her usual routine, she headed to the gym around noontime. Once at the gym, the pain got a touch worse and her back started hurting. But, this was her first child. She didn’t know what labor pains felt like. She assumed she was dehydrated and started to drink water. But, just in case, she called the nurse. She said the same thing, “You’re probably just dehydrated. Drink some water and get some rest.” It was now 6 pm.

Melyssa, not being one to complain told Jamie that it wasn’t that bad. Jamie didn’t think much of it. And why would he? Just the week before she had a normal exam. Her pregnancy had been uneventful thus far. Neither one of them thought she might be in labor. She was only 25 weeks pregnant. The baby was supposed to come in April, not December.

But, when you’re pregnant, you can never be too careful. So, they headed to Beverly Hospital. Pretty quickly, things got serious. Despite Melyssa’s high tolerance for pain, she started to keel over from the cramping. Eventually, they hooked up Melyssa to a monitor and IV. At this point, everyone was still assuming she was dehydrated. That was until a doctor manually examined her. He quickly left the room, assuring the couple he’d be right back. He did come back, but with a full team. During his examination, he discovered Melyssa was fully dilated. They gave her magnesium to try to stop the contractions and surfactant to protect the baby’s lungs.

But, the baby was coming and coming fast. Ideally, a micro-preemie should be born at Boston Children’s Hospital, which has all of the necessary equipment. But, there wasn’t any time to move Melyssa. So, Jamie called Melyssa’s family. Her mom, father, and sister arrived just in time.

To Melyssa, that night felt like a strange dream. As doctors worked all around her, a numbness set into her mind. She couldn’t speak. This really couldn’t be happening; it couldn’t be real.

At 9:10, Melyssa’s water broke; at 9:20, the little boy who would become an inspiration to so many people, Jace John Perkins, entered the world weighing only 1 pound 12 oz and 13 1/2 inches long.

Doctors warned the Perkins that they might not hear their baby cry. But, when they scooped up little baby boy Perkins, pulled him aside, cleared his airway, and cleaned him up, he did let out a cry. That cry was a message; don’t underestimate me, because I’m a fighter and I’m going to make it.

This cry gave Jamie and Melyssa a big sigh of relief. The doctors worked on their newly born son just a few steps from Melyssa. But, even though they were so close, she couldn’t hold him. They inserted a breathing tube into his mouth and wrapped him in sterile plastic wrap to keep him warm and to keep the fluids inside of his body. His skin was bruised and translucent and at first, swollen. But, the fluid quickly receded, showing just how vulnerable he was. His tiny little eyes were still fused shut.

The team whisked little Jace to another room. Jamie followed and was asked if he wanted to touch his son. He was scared, given the fragility of his little boy. But, as any father would do, he reached out and touched his little miracle. At this point, the gravity of the situation hit him. His index finger was bigger than the baby’s leg.

Within two hours from his birth, at around 11:30 at night, the Boston Children’s Hospital Transport Team came to take Jace to Boston. They put the baby into a machine that looked like a spaceship, an isolation unit intended to keep him in a controlled, germ-free environment.

Melyssa was allowed to put her hand in the unit to say good-bye to her son before they whisked him away to the city. Seeing her baby was alive and stable set her mind at ease, which meant she was incredibly naive to what was coming.

Less than 12 hours after giving birth, Melyssa left the hospital and headed to Boston. Her new job was pumping milk, which they would feed in tiny increments (just three drops at a time) through a nasogastric (NG) tube.

At this point, the change in hormones and heaviness of the situation hit Melyssa emotionally, literally leaving her in tears for two weeks. Jamie, as Melyssa describes her husband, is the most positive and supportive person alive. He never doubted his son’s strength. Jamie’s attitude and the love and support from her parents gave her the courage to be by Jace’s side and to adjust her expectation of what early motherhood should be.

On Sunday, doctors took off the wrap and gave Melyssa her baby to hold for the first time. It’s a see-saw decision to let anyone hold a micro-preemie because the tiny babies burn calories just by breathing and from the change in temperature, never mind the danger of the exposure to an uncontrolled environment. But, the skin-to-skin contact with the mother helps to bolster the baby’s immune system. In this case, the value of love tips the see-saw. And so, just for a few minutes, Jace was allowed to rest on his mother’s chest, and the unconditional love between a mother and her baby solidified.

During those first couple of weeks, every hour brought a new challenge. The machines constantly beeped, marking a drop in heart rate or oxygen. Simple stimulation, just a touch on his back, would correct the issue. But the constant threat of danger was exhausting. Jace slept under bilirubin lights, wearing sunglasses. The apnea spells continued; but at this point, doctors considered him stable. They constantly monitored for heart murmurs and did regular ultrasounds to look for brain bleeds.

The couple moved into Melyssa’s parent’s house in Revere; it was closer to Boston and Melyssa needed her own mother. The Miscis became Jamie and Melyssa’s rocks. Joyce Misci is a kindhearted woman who as Melyssa says, “Never complains and never says no. She never says she’s too tired, and she’s always willing to do anything for her children.” After hearing Jace’s story, it’s easy to say Melyssa inherited her mother’s nurturing traits.

The Misci family treated Jamie like their own son, giving him the same love and support they gave their daughter. For this, Jamie says he is forever grateful.

John Misci often imparted words of wisdom to keep the couple going, such as “Tough times don’t last tough people do,” and “Never let perfect be the enemy of all the good.” For Jamie, these words continue to provide strength.

Strength they would often need.

Within two weeks, Jace’s head circumference started to grow. He did have a brain bleed, but it had stopped. Unfortunately, it caused a clot, allowing spinal fluid to collect, which resulted in hydrocephalus, commonly called “water on the brain.” So, doctors tapped the soft spot to relieve the issue temporarily. But, they all knew they were going to need a long-term solution.

At three weeks, Jace went in for his first surgery where doctors inserted a subgaleal shunt, creating a little pocket to collect the fluid outside of the skull.

At this point, Melyssa was starting to feel both anger and sadness. There never was a baby shower. She didn’t get to hold her son and cuddle with him during the first day of his life. She was starting to feel helpless. All she could do was pump her milk.

And sitting next to her son was not necessarily uplifting. Jace was connected to an oscillator, a large breathing machine that would make him shake. But, Melyssa’s maternal instincts kicked in, and when that little baby would shake, she would say, “You need to stay here, you need to fight Jace.”

And fight he did. At the end of January, there was a minor triumph when the breathing tube was removed and a nose cannula provided oxygen.

At the same time things seemed to be getting better, the Perkins faced another challenge. The couple was asleep when Melyssa woke up because the bed felt wet. She turned on the light and found a horrible sight. She was lying in a pool of blood; she was hemorrhaging. She wrapped a towel around her waist and Jamie drove her to the hospital immediately. As it turns out, a few pieces of the placenta had been left inside of her uterus. Her body was trying to eradicate the now foreign material. Melyssa needed surgery and a blood transfusion. If she hadn’t woken up, she would have most likely bled to death.

The worst part was she was put on bed rest for three days. No trips to see little Jace. But, Melyssa and Jamie are positive and strong people. Most importantly, they are wonderful parents. So, they pushed forward.

In February, Melyssa had to go back to work. The couple took turns at the hospital, with Melyssa attending during the day while Jamie worked and Jamie attending at night so Melyssa could work. At this point, Melyssa was mentally exhausted. Her sister became her point of communication and the amazing nurses at Boston Children’s Hospital became part of her family.

The men and women that work in the NICU are a special group. Melyssa’s credits Jace’s life and her sanity to them. They are not just medical staff, but therapists, handling a delicate situation in the kindest way.

As Jamie told us, “The NICU nurses are a group of individuals that give a part of themselves to each and every child they care for, without most of the public ever really knowing the magnitude of the services they provide day in and day out.”

There was a dance of progress and regression, with each step forward there was an occasional step backward.

The blood clot that had caused the hydrocephalus ended up dissolving. However, scar tissue replaced the clot and ended up causing the same problem. Jace had another surgery. That same night the medical team found blood in his stool. They ordered an x-ray and found air in his intestines.

This was probably the most dangerous situation Jace faced; necrotizing enterocolitis. For lack of a better description, he essentially had a flesh-eating disease in his colon. One in ten micro-preemies faces the risk of this bowel perforation. If they were still in the womb, they would be receiving food through the umbilical cord. Their guts would not be asked to work so hard. The team told Jamie and Melyssa that Jace might not make it through the night. But, true to his spirit, that little baby fought back hard. Doctors gave him antibiotics and he was not allowed any food. A later x-ray showed Jace averted a potentially life-threatening condition.

March comes and Jace weighs about three pounds. Doctors are continually measuring his head; unfortunately, the circumference is getting bigger. They needed to do something. A shunt will eventually malfunction. A clog might cause a need for immediate surgery. They needed a more permanent solution.

Dr. Benjamin Warf, a man for whom the Perkins are grateful had pioneered a new technique to deal with “water on the brain,” called an endoscopic ventriculostomy (ETV). Melyssa told us, “Dr. Warf is a nice, sweet man who explains things kindly.”

In an ETV, the choroid plexus is cauterized. Rather than putting in hardware that will fail, Dr. Warf essentially made a bypass by drilling a hole into a part of the brain that doesn’t control anything. The fluid is then absorbed. Jace’s head finally started to stabilize. He was also able to start bottle feeding.

With all of this progress, the Perkins moved to Winchester Hospital. This felt like a step closer to home.

But, Jace had a hard time with the bottle. Preemies don’t have the coordination to breathe, suck, and swallow. So, while moving to the bottle was a huge step forward, it was also a major challenge. The new family spent most of the month of April at Winchester Hospital. But, Jace continued to have a hard time eating. He would choke, turn blue, and his oxygen levels would drop. So it was back to Children’s for a week.

Melyssa felt there was something else wrong. She could hear his belly gurgle. The protocol was to fortify breast milk and one of the additives was dairy. Melyssa, who was lactose intolerant, suggested Jace might have the same problem. After discovering more blood in his stool, they switched to a non-dairy additive.

On Mother’s Day, Melyssa and Jamie did the March of Dimes walk and then went to the hospital to take their son home. After 137 days in NICU and weighing nine pounds, Jace went home on May 10th, 2014; his original due date was April 8th.

During those first few months at home his eating wasn’t perfect, and he was developmentally delayed, as any preemie is. But, he was growing.

They made it to August without any issues, until Jace required surgery to correct an enlarged ventricle. Being a bigger and more alert baby, the recovery wasn’t as easy, but they made it through it. He had one more surgery to correct a lazy eye.

As a result of his early birth, Jace has many developmental delays; he was diagnosed with autism in June of 2016. Although the diagnosis is scary, Melyssa and Jamie tell us Jace is always lovable and content. He’s a good boy and he’s a fighter, and he has a team helping him fight. People are constantly in the Perkins’ home. Speech therapists, OT therapists, a wide array of specialists are helping Jace navigate his development at his own pace.

And Jace helps people.

People often contact the Perkins about how Jace, the little boy with a strong spirit, inspires them. When Melyssa feels weak, she thinks of Jace and regains strength. Jamie aptly points out that Jace fought harder than a man 200 times his size at birth and beat the odds.

Jace turns three next month. In these three years, he’s inspired many people. His adorable picture is all over Boston Children’s Hospital. He is a hero to those people who cared for him. They are undoubtedly grateful for the inspiration he provided them.

Jamie told us that, “My son has changed me in ways no one could. He’s also changed the lives of countless others some people I don’t even know. He has taught me that it’s okay when things don’t go as planned. I truly believe our son made it here after two years of trying and beating every obstacle that came his way is all for a purpose bigger then anyone can imagine! Just look how much he’s accomplished and he’s not even 3 or talking yet.”

When life doesn’t go the way we hoped, we have two options. We can either give up or we can fight. We make the choice to find the positive in a bad situation. Jace and his parents chose to fight, and Jamie and Melyssa Perkins see the positive side of the challenges over the past three years. They aren’t angry that things didn’t go as planned. Jace makes people smile. His story gives people strength. For these things, they are grateful.

Update

“Jace is doing very well. He’s making huge progress with his language skills and is starting to put more words together. He will be finishing up his last year of preschool at the McCarthy school in Peabody. He also goes to Futures Behavioral Therapy center in Beverly where he receives his ABA therapy. We are so grateful for all the wonderful people that helped Jace get to where he is today. He works hard for things that come easy to most kids, but he shows us every day how amazing he is.” – Melyssa Perkins

Jamie and Melyssa’s good friend has been running marathons – Boston, New York, Berlin, and next up London to raise money for Miles for Miracles. You can donate to the run here.