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The Sunshine Boy

Twice, the United States came to the rescue of Hysen Hamzaj’s family. The first time was in 1999 when family members immigrated to the U.S. from Macedonia as refugees from the Kosovo War. The second time was in 2016, when doctors saved the lives of his wife, Magbule, and their infant son, Aron, who was born prematurely. It was, says Hysen, a miracle.

It was Christmas 2016. Hysen, 41, and Magbule, 35, had traveled 5,000 miles from their home in Pristina, Kosovo, to spend the holidays with family in Wyomissing, Pa. Christmas day dawned crisp and clear. It was a good day for a stroll around the block. Hysen was between 29 and 30 weeks pregnant with the couple’s first child. During their walk, Magbule felt unusually tired and had difficulty walking. The couple returned to Magbule’s sister’s house, where Magbule became ill, then fell asleep.

Magbule awoke a few hours later with blurred vision and a headache. Her hands, feet and the tissue around her eyes was swollen.  Hysen, a head, neck and throat surgeon, took her blood pressure. It registered 220/117 (normal is 120/80).

Hysen knew his wife and baby could be in danger, so at 11:55 p.m. Christmas night, Magbule was rushed to the emergency room at Reading Hospital. Magbule was diagnosed with preeclampsia, a high blood pressure disorder that can develop during pregnancy. The baby’s heart rate was dangerously low. Doctors wanted to deliver the couple’s little boy as soon as possible but they needed to get Magbule’s blood pressure under control before any surgery could be done safely. “They said we cannot postpone more than one or two days,” says Hysen.

Around 2 p.m. on December 26, Magbule began having seizures. “I saw her eyes rolling back and she was starting to bite her tongue,” says Hysen. “The medical team came in to intubate her.”

Magbule was rushed to the operating room for an emergency C-section. “When they took her I thought it’s over,” says Hysen, his eyes misting at the thought. “One moment you are with her, the next moment it could all be over. All I said was, ‘Don’t let me be alone.’“

Baby Aron was safely delivered at 2 pounds, 11 ounces. A nurse videotaped Aron’s first cry. “It was like a raisin in the sun,” says Hysen. “He was like a little sparrow.”

But Aron’s survival and that of his mother hung in the balance. Both mother and child were intubated. Magbule was admitted to the intensive care unit. Aron was sent to the neonatal intensive care unit. His heart torn, Hysen stayed by his wife’s side, pulling himself away on one or two occasions over a four-day period to check on his son.

Magbule was placed in a medically-induced coma for 36 hours and given two blood infusions as doctors struggled to bring her blood pressure under control. The turning point came on December 30 when Magbule’s blood pressure dropped to normal. The crisis past, Magbule was stable enough to be transferred from the ICU to another unit, eventually getting released to her sister’s on January 2, 2017.

Aron, however, was not going anywhere soon. His tiny, underdeveloped lungs made every breath a herculean effort. Aron was diagnosed with chronic lung disease and relied on supplemental oxygen to breathe. With his tiny body struggling to take each breath, Aron was burning up precious calories which made gaining weight difficult. A nasogastric (NG) tube feed administered through Aron’s nose provided the additional necessary nutrition, but he needed to be weaned off the ventilator so he could breast feed or drink from a bottle.

Over the next four and a half months in the NICU, as Aron’s lungs got stronger, he gradually began breast feeding. Aron had an aversion to bottle feeding, though, and needed the tube feed to provide supplemental nutrition. Aron slowly progressed enough to be transferred to an inpatient rehabilitation program, and on the recommendation of a doctor at Reading Hospital, Aron was admitted to the Good Shepherd Rehabilitation Hospital Emily Howatt Pliskatt Pediatric Unit in Bethlehem on May 5, 2017.

Lindsey Nolt, a speech therapist, was part of an interdisciplinary team working to build Aron’s strength and remedy his feeding problems. “When Aron came to us he was really sleepy and his endurance was really poor,” says Lindsey. “He wasn’t able to stay awake more than five or 10 minutes during a feed. He also was showing lots of signs of distress when we showed him the bottle. He would push it away and cry, and sometimes gag. That’s why we did trials with the breast. He stayed awake and was calmer and happier.”

By the time Aron was discharged, he was able to stay awake for feeding sessions of 30 and 40 minutes, says Lindsey.

Parent education is an important component of the unit’s feeding program, and Magbule and Hysen were fully committed to learning all they could to make breast feeding with mom more pleasurable and productive.  “We provided hands-on education and strategies to help improve the quality of the feeding session, rather than focusing on how much the baby could drink,” says Lindsey. “When Aron first came his parents were providing too much stimulation to him during feeding by talking to him and touching him. They just were unaware of how to make feeding as pleasurable as it could be.

“We provided a lot of training about better feeding positions, ways to reduce environmental stimulation by making sure the room was dark and quiet, and what to look for when Aron was beginning to show signs of stress. These strategies helped Aron to remain calm and actively engaged during feedings. His parents did a really great job. They were very hands-on and loving to Aron, and willing to implement the strategies for him every day. ”

Building Aron’s strength and physical endurance was another challenge tackled by physical and occupational therapists. “Aron was not a big fan of being on his tummy,” says Beth Sensenig, a physical therapist, “and tummy time is very important for children when they’re developing because it helps them develop more physical strength in the upper body and neck, which can carry over into oral strength as well. The more stability there is in his neck, the better we could help manage his swallowing.”

Because Aron favored turning his head to the right, Carrie Bose, an occupational therapist, employed exercises encouraging Aron to turn his head to the left for full range of motion so he could better engage with his environment. She also helped improve Aron’s motor skills such as reaching for a toy and bringing his hands together.

As difficult as it’s been to be away from home for so long, Hysen and Magbule are immensely grateful for the quality of care which far exceeds what they would have received in Kosovo.  “I was amazed at the system over here,” says Hysen. “We don’t have speech or respiratory therapists. If this had happened in Kosovo, I have my doubts they (Magbule and Aron) would be alive.”

Magbule found it deeply comforting to be able to sleep in Aron’s room at Good Shepherd and be with him around the clock, a practice unheard of in Kosovo. Hysen also was` grateful for being able to spend  every waking moment with his wife and son, breaking away only at night to sleep in a hotel provided by Good Shepherd.

And with every step of Aron’s therapy, Magbule and Hysen were there, welcome partners with Good Shepherd in their baby’s recovery. “In my country it’s up to me to discuss things with the doctor,” says Hysen. “I was having full access in every decision, every course of treatment and everything else.”

From learning how to change Aron’s NG tube and maintain the pump to learning appropriate feeding strategies for their son, Good Shepherd nursing staff educated Hysen and Magbule, giving them the confidence to care for Aron at home. “We are prepared,” says Hysen. “I think we can manage whatever happens.”

After one month at Good Shepherd, Aron was discharged. The family is extending its stay with Magbule’s sister in Wyomissing until Aron is fully weaned off the NG tube with help from feeding therapists in Good Shepherd’s outpatient Pediatrics Program.

“Just saying thank you is not enough,” says Hysen. “It’s hard to express what you have in your heart. Such good people, good men and women, working in the hospitals in Pennsylvania, saved two lives. We have our Aron here. He’s a happy boy. Like sunshine. It was a crazy vacation, but it’s just a lovely, happy ending.”