Local family hopes to educate about premature births

More than half a million babies are born prematurely — before 37 weeks of pregnancy. Bethany resident April Fels never thought that her second child, Trustin, would be one of those babies.

Trustin Fels was roughly the size of his mother’s hand at birth.

“I did not drink, I did not smoke,” said Fels. “I took my vitamins and went to all my doctors appointments, I did everything right and still had a baby born at 26 weeks. Premature birth can happen to anyone at anytime in their life. It can happen to you, your child, your grandchild, your best friend. It does not discriminate in who it chooses or why.”

Fels and her husband Randy experienced three miscarriages over two years, following the birth of their first son, Ethan.

In January of 2011 when they found out they were expecting again, they were told by doctors they would miscarry again. However, Fels did not miscarry, and made it to the three-month mark. At that point she experienced extreme bleeding and was told she would miscarry, but again, did not. At month four she had another hemorrhage, and was again told she would miscarry, with the odds of the pregnancy continuing at 3 percent.

“I had a lot of problems throughout my pregnancy and from the day I found out I was pregnant they told me I was going to miscarry,” she said.

Fels was put on bed rest and at 21 weeks pregnant, her water broke and she was taken to Peninsula Regional Medical Center.

“They said that 90 percent of women go into labor within 24 hours of their water breaking. And that they would not attempt to save our baby because it was simply too premature,” she explained.

Doctors told Fels if they could make it to 23 weeks before the baby was born, they could be transferred to Johns Hopkins, as PRMC could only care for babies at 28 weeks of gestation or later.

On June 16, Fels gave birth to Trustin at 26 weeks at one pound, 14 ounces and was 12 inches long. He was born on the same day as his father’s and uncle’s birthday.

“It’s hard to imagine how small they are,” she said. “You try to think a pound but until you compare that to a pound of butter in the grocery store, you can’t envision how small they are.”

Fels said the labor was a “nightmare and that Trustin’s heart stopped twice. Following his birth, he was given a .6-percent chance of survival.

“We needed something a little bit more meaningful,” said Fels of Trustin’s name. “Trustin Emmanuel, which means, ‘Trust in God with us,’ and basically that’s what he made us do because it was out of our hands.”

Trustin was diagnosed with extreme prematurity, lung disease, heart disease, a small hole in his heart, bi-pulmonary hypertension and many other conditions.

“Because he had no amniotic fluid, he stopped developing lung wise once my water broke… His lungs and his heart, they were just far more premature than even he was,” explained Fels.

Fels said being in the hospital was extremely difficult, watching their little one fight for his life. She and her husband couldn’t even hold Trustin until he was 2 months old.

After four months in the NICU, Trustin was released from the hospital in October and went home to his family.

“Being home makes it a ton better. I hadn’t seen my five-year-old less than a handful of times since I had been there because he wasn’t allowed to be on my floor or in the NICU. That was one of the most trying things,” said Fels of her son Ethan.

The Fels family now needs to limit their exposure to germs and bacteria, so Ethan was kept out of school this year.

“I think the hardest thing now is the fact that we can’t really leave the house so he’s kind of getting a little antsy. He’s doing better. He wasn’t real thrilled with things when we were stuck in Baltimore,” she said. Adding, “He loves being a big brother. Absolutely, absolutely loves it. At 5 years old it’s hard to explain to him why I’ve been gone for six months of the year.”

Trustin is still battling numerous health issues, and is on oxygen 24-7 and monitored constantly. He has numerous doctors’ appointments, many of which are in Wilmington and some are out of state.

“The smallest thing is just so hard on him because he was so premature. We go out much more frequently than I would like. At this point, it seems like we’ve had a few each week. He has some specialists that we have to go to… Right now he’s having problems, he failed his hearing tests, so we’re having to go to different places to have his hearing checked,” she said. “He has developmental people that he has to go see basically because of the fact that he was so premature, he was delayed in some respects. So just a lot of different doctors.”

Fels said that, through it all Trustin has been getting stronger and is a really good baby.

“He’s definitely bigger now. Right now he’s 9 pounds, 10 ounces, and he’s 21 and ¾ inches long.

“He’s very calm and mellow,” she continued. “I keep thinking he’s seen and experienced what life can be like so he’s very appreciative of what he has, being home now because he’s very quiet, he’s very calm. He’s a very good baby. He wants to be held, that’s his biggest thing. He wants to be held all the time. I can’t blame him, because if I had laid in the NICU in that isolette for as long as he did I’d never want to be put down either.”

Fels said that now the family is also worrying about paying for all of the hospital care and aftercare that Trustin needs.

“Being up there was expensive. You add in hotel costs and meals and parking and everything in that respect, plus then the medical bills and even Randy driving back and forth to be able to work, and missing work so much… Just my medical bills from the time that I was in the hospital and the medical bills that we still have for him, it’s just astronomical.

“He maxed out his insurance plan while we were at Hopkins. That was an interesting position to come into. His lifetime maximum was a million dollars. So when you can reach a million dollar maximum is intense and then figuring out where to go from there.”

She noted that because he was hospitalized for so long, he’s considered a disabled child and will be granted some assistance from the state. She added that people in the community have also reached out to help her and her family.

“There’s a ladies group in Bethany, a sorority, they’ve reached out as well. They actually brought us Thanksgiving dinner. They brought us groceries as well.”

Fels said that she hopes to educate more families on the risk and frequency of premature births.

“My biggest thing is to try to get the word out to everyone because I had no clue. There’s another family down here that’s going through the same thing and it’s just so difficult.”

She added that while this has been one of the most difficult year’s in her family’s life, it has also been very rewarding, and they are all so thankful to have baby Trustin.

“But it’s one of those things, we kind of would just like to let people know really what can happen because people have no idea,” said Fels. “It can happen to anyone and I don’t think people realize that. We never, in our lives would’ve imagined that we would’ve had a premature baby to start with. And then to imagine what it’s like to sit in the NICU for six months is gut wrenching. It’s so difficult and hard and emotionally draining.

“Until you’ve been through it, you have no idea how difficult it really is or everything that it entails. I think it has been the most difficult and rewarding year that we’ve ever experienced.”

To donate to the Fels family, donations may be made to the Trustin Fels Fund at Fulton Bank, located at 60 Atlantic Avenue in Ocean View.