Summer Ghent Struggles Through A Difficult Summer

By Kaaren Valenta

Five-year-old Summer Ghent weighs only 22 pounds. She lies on the sofa in the living room of her family’s rented house in Sandy Hook while a visiting therapist gently massages her arms and legs.

Across the room, Summer’s parents, Barbara and Peter Ghent, watch, exhausted by a sleepless night during which their tiny daughter cried almost nonstop.

“She cries all the time now,” Barbara Ghent said. “She’s been undergoing tests to try to find out what is wrong.”

Summer was featured in several articles in The Bee in 1996 and 1997 after she was born with a rare brain disorder. Volunteers from the community worked with her for 13 hours a day, seven days a week, for months, doing a therapy program called “patterning” to stimulate her brain. The Ghents also took Summer to the Institutes for Achievement of Human Potential in Philadelphia, where ground-breaking work was being done with brain-damaged children. But when a doctor at the Mayo Clinic finally told the Ghents that the patterning would never work, the couple decided to stop the grueling procedures.

“[The doctor] said she would never been able to do what we had hoped, and it was stressful and pointless to put her through it,” Barbara Ghent said. “He said that children born with Summer’s condition rarely live beyond the ages of 10 to 14. So we decided to let all the patterning go, and just enjoy her while we still had her.”

Despite her medical problems, Summer thrived. She was able to sit in a wheelchair and attend the Probe program at Middle Gate School.

“She was doing great,” Barbara Ghent said. “She’d get so excited when I’d say ‘here comes the bus.’  She enjoyed the other children. She smiled all the time and was so easy – we took her everywhere.”

But for two years doctors at Danbury Hospital had been recommending that Summer have a feeding tube. Barbara had resisted the recommendation, even though it took six hours a day to feed her daughter and give her medications.

“The doctor said life would be so much easier with the g-tube,” Barbara Ghent said. “Finally, I agreed when Summer had to have her baby teeth extracted because they were getting loose and the doctors were afraid she would aspirate them. Since Summer had to go under anesthesia anyway to have the teeth out, I agreed to do the g-tube. But something went horribly wrong.”

Later, Mrs Ghent would learn that when the g-tube was inserted into Summer’s stomach, the intestine was accidentally perforated. But no one realized that Summer faced a life-threatening danger when she was sent home after the procedure.

“They released her at 10:30 pm on Friday, May 11,” Mrs Ghent said. “She was sick all day Saturday, pulling up her legs and screaming. I took her back to the hospital, but they said she only needed to have an x-ray, and sent her home again.”

On Sunday, Mother’s Day, Barbara realized that Summer’s breathing was labored. “She didn’t look good,” Mrs Ghent said. “By the time we got to Danbury Hospital, I knew she was dying.”

Summer had gone into septic shock, infection raging through her body. She was rushed to Westchester Medical Center, where she remained in the emergency room all night, then underwent more than six hours of surgery, before being moved to the intensive care unit. 

“She was in the intensive care unit for seven and a half weeks and had five surgeries,” Mrs Ghent said. “They didn’t expect her to make it. She was very, very sick. For the first six weeks, they said she was the sickest kid in the hospital.”

Finally the Ghents brought Summer home, but life has not been the same.

“The surgeons had to remove part of her stomach as well as intestine,” Mrs Ghent said. “They told us it may not be possible to ever get her off the tubes.”

But far worse for the Ghents are the many hours each day that Summer cries and screams.

“She’s upset. She doesn’t sleep. She has terrible reflux and throws up 10 times a day, something that never happened before,” Barbara Ghent said. “At first she screamed day and night. Now it is mostly nights. So far the doctors have eliminated possible neurological and abdominal causes. It’s very hard on all of us, even our other children [Madison, now 7, and Richard, 15]. We’re trying everything now to get her to sleep.” 

“Last week she slept four hours in five days,” Peter Ghent said. “I drove 60 miles [in the car] trying to get her to sleep. This is so hard on our family.”

During the year leading up to Summer’s surgery, the Ghents faced other problems as well. Peter, a carpenter, accidentally ran a skill saw through his hand, an injury that required 10 hours of surgery and caused significant neurological damage.

“I’m on workmen’s compensation now, but it took a year and a half to get any money,” Mr Ghent said. “We lost our home.”

During that time, Barbara got a job as a bookkeeper, a job that she subsequently lost because of the months that she remained at Summer’s bedside in the intensive care unit.

“We stayed at her bedside for 22 days,” Peter Ghent said. “For the first five days we slept in the waiting room, then decided we needed to take showers, so we rented a hotel room. Finally, they told us it was safe to go home at night.”

Summer always loved music, so the Ghents tried taking her to an outdoor music festival. “She slept for 11 hours, so we tried again,” Peter Ghent said. “But this time the electric pump [that Summer is hooked up to] broke, so we had to leave. We can’t get a spare; we were told we could buy a backup pump for $1,600 or rent one for $118 a month. I can’t imagine what we will do if the power goes out.”

But the immediate problem that the Ghents face is the shortage of registered nurses.

“We got approved for 20 hours of nursing services a day, but there just aren’t any nurses available,” Barbara Ghent said. “The agency, On Duty Home Care, can’t find enough RNs. We tried to contract through the Newtown Visiting Nurse Association [VNA] and the Southbury VNA but haven’t been successful. We’re only approved through September, so we are hoping that some nurses hear about Summer and will help.”

 Richard Fenaroli isn’t a nurse, but he wants to help the Ghents. A Newtown-based, licensed and insured contractor, he learned about the family’s plight after the Ghents rented a home that he owns in Sandy Hook. He decided to offer the profits on home addition/renovation projects this summer to the Summer Ghent Trust Fund.

 Mr Fenaroli’s business, Sanctus Industries, Inc, will contribute all of the proceeds, up to $50,000,  from “Alterations for Summer.”

“As a community, we ought to be able to help,” Mr Fenaroli said. “We ought to be able to shoulder some of what they are going through. For them, this is a lifetime commitment. For us, it is like passing the baton – everyone helping a little.”

For more information about “Alterations for Summer” call Tammy Fenaroli at 426-3333, extension 19.

Anyone who is not interested in having an addition or renovation project done, but who would like to help the Ghent family, can send donations to “The Summer Ghent Trust Fund,” c/o Michael Ronan, 30 Main Street, Suite 500, Danbury, CT 06810.