Family very thankful for their 'little fighter'

Last year, one Sayreville family had reason to be thankful when their second child was born on Thanksgiving Day.

Tyler Asseng This year, the family is thankful just to celebrate his first birthday after 12 months fighting a debilitating disease.

Jennifer Luma-Asseng and her husband, Walter Asseng, have brought two children into this world — Haley, who is now 2, and Tyler, who will be celebrating his first birthday on Friday.

"He was born on Thanksgiving Day and has given us so much to be thankful for," Jennifer said.

What makes Tyler's birthday so miraculous, however, is his will for survival. Tyler, who was born with two undetected holes in his heart, has undergone a series of surgeries and procedures in his first year, including open-heart surgery when he was only 6 weeks old.

Tyler was born at Riverview Medical Center in Red Bank, Monmouth County. He was thought to be released in good health but a few days later started showing symptoms that resembled the common cold.

Tyler had contracted respiratory syncytial virus (RSV) and bronchiolitis and at 9 days old was admitted at Robert Wood Johnson University Hospital in New Brunswick. The respiratory virus can be very dangerous for small children, infecting the lungs and breathing passages, according to the Assengs.

After other methods to maintain his bloodoxygen level were unsuccessful, Tyler was intubated. But when doctors found the ventilator was not sufficient, a pediatric cardiologist was brought in to conduct an echo-cardiogram, which revealed he had an atrial septal defect (ASD) and a ventricular septal defect (VSD), which are two holes in the wall of the heart that separate the upper and lower chambers.

In addition to the ASD and VSD, the doctors found Tyler also suffered from pulmonary hypertension (PH), a rare disorder involving abnormally high blood pressure in the pulmonary arteries of the lungs. Tyler was put on nitric oxide, which is often used to treat PH, and transported to the Morgan Stanley Children's Hospital of New York at Columbia, where he continues to reside as a patient.

At 1 month old, Tyler had contracted a blood infection and on New Year's Eve went into septic shock, a serious condition that occurs when an infection leads to extremely low blood pressure. Although doctors were able to stabilize him they were unsure whether he would make it through the night. He did, and shortly after Tyler recovered from the infection. After unsuccessful attempts to extubate him, the doctors felt that it was in Tyler's best interest to repair the heart.

Due to the severe lung damage from the RSV, it would take time for Tyler's lungs to heal, but the congenital defects that Tyler was born with needed to be repaired. So at only 6 weeks old, Tyler went in for open-heart surgery. Once the repair was complete, however, he was unable to come off the bypass machine due to the high pulmonary pressures in his lungs. The surgeons started a drug called Flolan in the operating room and placed a small hole in the tissue of his heart to act as a bypass for the pressure. At that point, the Assengs were faced with yet another difficult decision.

"The doctors offered us two options — One, turn everything off and let nature take its course, or two, they could put him on a machine called an ECMO [extracorporeal membrane oxygenation]," Tyler's mother said. "ECMO was our only option. As parents, you do everything you can to fight for your child's survival. Turning everything off was not an option we were willing to take, regardless of the risks."

ECMO supports oxygenation in the blood by bypassing the heart and lungs, but the machine has dangerous risks, according to Jennifer.

"The surgeon told us at best his odds for survivalwere 40 percent," Jennifer said. But five days later he was able to come off ECMO.

Through the next several months, Tyler continued to have infections. In April, he went into the operating room to have a Broviac, a long- term external catheter used to administer the drug Flolan, which has to be constantly infused due to its short lifespan within the body. Seven days later, Tyler went back in for surgery to get a tracheostomy, a more permanent means to deliver oxygen to the lungs.

In June, Tyler went into renal failure, the sudden loss of the kidneys' ability to function properly, and after several failed attempts to insert the dialysis catheter, the Assengs were told there was nothing else left to do and that Tyler most likely would not survive the night. But Jennifer and Walter never gave up, and neither did Tyler. Later that same evening, Tyler began to urinate. Although his kidneys failed two more times after that, he always managed to recover. Tyler was doing well and arrangements were in the works for his transfer to the Children's Specialized Hospital in New Brunswick for rehab.

But a few days before his anticipated transport, Tyler went into cardiac arrest. Over the course of several weeks, he continued to get more infections and arrested for a second time.

On Oct. 5, Tyler went to the OR for the fourth time, receiving a gastric feeding tube and a procedure to prevent the flow of acids from the stomach into the esophagus. After a few days, Tyler was doing well. But on Oct. 26, Tyler arrested for the third time.

"Ten minutes later [however], he was back to watching his 'Baby Einstein' video," his mother said.

While waiting for a bed at Children's Specialized Hospital, Tyler has run into some complications, and has been placed back on nitric oxide for support.

"Although this is a setback, we are confident this too shall pass," Jennifer said. "Tyler sets his own pace and let's us know when he is ready to move forward."

In the meantime, Jennifer and Walter have been training with a cardio-pulmonary nurse specialist to learn how to administer Flolan once Tyler can return home.

"We need to learn how to take care of him on a daily basis. There are a lot of things we need to know before he can come home," she said. "Thankfully, some of the nurses allow us to be hands-on with his care, allowing us a good jump-start for when we are transferred to rehab.

"I think Tyler needs to experience life, life outside of a hospital bed, so our goal is to get him home and take care of him," Jennifer said. "Although he suffers from an incurable disease, it is for the most part a manageable disease. We are ready to learn everything necessary to bring our little boy home where he belongs and give him the best possible quality of life filled with lots of love."

Although Tyler has spent the first year of his life in a bed fighting a constant illness, and has developed at a much slower rate than other children his age, he is making progress. He's even cutting his first tooth, Jennifer said.

"Tyler's doctors told us that most kids would not have survived what Tyler has survived," she said. "He's a strong little fighter and he amazes us on a daily basis."

It's too early to tell what the future holds, but Jennifer hopes Tyler does not have to depend on a ventilator for the rest of his life.

"He's still a baby, so his lungs can rebuild tissue," she said. "We can hope for the best, but we have to take one day at a time."'

Celebrating a "miracle"

This Friday, Tyler and family will celebrate his one-year birthday.

"We're going to have a little party with his family and some of his favorite nurses," his mother said. "So we're going to get a cake and decorate his room and celebrate his first year with us. We'll make the best of the situation and when he comes home, we'll have a huge celebration when he's ready."

Jennifer said she thinks being at Columbia Hospital for his birthday has an upside, since many of the nurses have known Tyler his entire life.

"A lot of the nurses we consider to be Tyler's family. Some of them have just been amazing with Tyler," she said. "They have gotten him through some tough times and they've worked hard to get him where he is."

Tyler's life has been a roller coaster of sorts thus far, but his parents have been at his side for the entire ride.

"We don't know how we got so lucky. I know people probably think we are unlucky because we have a sick child, but there are no guarantees when you have children that they are going to be healthy. You take the good with the bad, and even if it's only 10 minutes of good for a day, it more than makes up for the bad," Jennifer said. "To see Tyler watch his DVD or to get the chance to hold him for an hour or two gives us the strength to get him through this."

"Tyler is our miracle, the strongest person I have ever known," Walter said. "I thank God every day for our little blessing and feel privileged to have him as our son. I am the happiest and proudest man in the world."

No doubt, Jennifer and Walter, along with their friends and family, wish Tyler a very happy first birthday, and they look forward to celebrating many more.