LEESBURG — From the time Bennett Jones was diagnosed with critical aortic stenosis at 33 weeks gestation, there was motivation to give him every opportunity to survive.
His journey ultimately ended last month, at age 8, but the youngster’s memory and legacy remain.
Bennett died on Sept. 4 at St. Louis Children’s Hospital, several weeks following a heart transplant after his body rejected the new organ. He was born on Dec. 30, 2010. He had his first surgery when he was two months old at Children’s Healthcare of Atlanta, followed by another at age 4.
At age 7, he went in for a heart catheterization, during which it was discovered that his lung and heart pressures were high. Not long after, in February 2018, he went into cardiac arrest at home.
“We were sent to Children’s in Atlanta,” Laura Jones, Bennett’s mother, said. “We decided it was time to proceed with transplant evaluation.”
Children’s did not feel comfortable doing the procedure, and Bennett’s case was rejected by three other hospitals. Then the Jones family found the hospital in St. Louis.
“They agreed to do the evaluation, and in September 2018, we went in,” Jones said.
Dr. Pirooz Eghtesady, a pediatric heart and lung surgeon affiliated with St. Louis Children’s Hospital, agreed to take on Bennett’s case.
Bennett had another heart cath to get an accurate picture of where he stood, after which he became ill. His doctor determined a left ventricular assist device, or LVAD, was needed.
The decision was made to put the device in the atrium of his heart, contrary to how it is normally placed, to improve function.
“It had never been done before in the country,” Jones said.
The surgery took place on Oct. 11, 2018. The following January, Bennett was put on the transplant list.
“Our hope for the LVAD was to bring his lung pressures down to normal so he could be listed,” Jones said. “We got the success we wanted.”
The LVAD was carried in a backpack so that it could remain attached to the youngster, and it came with a remote control.
“It allowed him to be mobile and do things outside of the hospital before the transplant,” Jones said.
On July 28, the Jones family was notified that Bennett would be getting a new heart. After the 13-hour procedure, he eventually came off the ventilator and the first heart cath after the transplant showed no sign of rejection.
In the second week, however, signs of rejection began to show. Biopsies were done each week, and kidney failure and pancreatitis developed.
“On Sept. 4, we decided to let his pain and suffering go, so we took him off life support,” Jones said.
Bennett’s mother is complimentary of the care Bennett received during the year she was in St. Louis with him and her daughter, Mollie.
“The staff and doctors were very supportive,” Jones said. “They never gave up on us. The last year of Bennett’s life was the best he ever had.”
The family has submitted a letter via Mid-America Transplant to seek out the family of Bennett’s donor in hopes of being able to meet them.
“All we can do is submit letters; sometimes you meet them, sometimes you don’t,” Jones said. “I am not nervous about it; I really want to share Bennett’s story.”
The Jones family in turn gave back by allowing Bennett’s corneas to be donated.
“Organ donation is important to us; there are so many children and adults just waiting,” Jones said.
The family strongly supports organ transplantation, so much so that Jones said she will go through training with Mid-America to assist other families facing what she did.
“It is a very respectful process,” Jones said.
The outcome for Bennett was not the desired one, but it did make a difference. Once he had the surgery, he was given hope for a stronger quality of life. For a short while, that quality of life was on display, as Bennett was able to walk around the halls of the hospital.
“There were no regrets in the end,” Jones said. “We gave him every opportunity, and so did the team.”
Apart from the friends made at the hospital in St. Louis, Jones said she did not have contact with another family going through a similar experience. By telling Bennett’s story through Mid-America, she said she hopes that will help her grieve.
“I think that will help us put closure on Bennett’s death,” Jones said.
Apart from the misconception that the body is savaged during the transplant process, Jones said something else lost on people is the tremendous need.
“What shocked me the most was how many kids are waiting,” she said. “We did meet families whose children died (waiting on an organ).”
Bennett did not get to play sports or ride his bicycle to the extent he had hoped, Jones said, but the hope given to him through the transplant was enough to make it worthwhile. He was made aware of what had to take place in order for him to receive a new heart.
“He was very excited about getting a new heart,” Jones said. “To see that change in him was worth it.
“He was concerned about the donor and what had to happen there. We explained to him that people make choices so others can live.”
While seeing items like Bennett’s bike, shoes, toys and snacks left behind rekindles sadness in Jones, she said she feels no anger.
“I am not angry,” she said. “I am sad Bennett didn’t get to enjoy life longer, especially because Bennett talked about how good he felt. (The things he looked forward to) were little things to us, but huge to him.”
The family still receives donations, cards and other gifts. Bennett received a card from every state, as well as well wishes from professional athletes and members of the military — some of whom gave him the medals they had earned.
“People are always wanting to help,” Jones said.
Much of this support came from the community Bennett had to leave behind in Leesburg while he was receiving care in St. Louis.
“This community we live in has (given) amazing support,” Jones said. “We still have people contacting us.”
The donations helped the family offset meal and gas costs, and Christmas gifts were sent to St. Louis. Mollie, 15, stayed in St. Louis with her mother and brother while taking her schoolwork online — and Jones’ husband and other son remained in Leesburg.
“It was very trying to be separated for a year and live separately,” Jones said. “We have a lot of support and figured out a way that was best for our family.
“It was very emotional for the kids; it was a strain on everybody. The day-to-day things we used to do together we did separately.”
Jones’ husband has family in the St. Louis area, so relatives accommodated them before a nearby apartment was secured.
After Bennett’s death, Jones said leaving the doctors and staff was difficult. Many, she said, had become like family themselves.
“Some came for the funeral,” Jones said.
A reunion with that extended family is in the future, with a trip planned for the week after Christmas. Meanwhile, the Joneses are living in a quieter house.
“When we came home and walked through the door for the first time since last September, I felt his presence,” Jones said from her living room. “That is where he lived his whole life.
“I feel comfortable knowing I feel his presence here.”
Bennett’s belongings are still in the house, but signs of him are outside the threshold. Jones had to eventually take his car seat out, and came across his bike one day when checking the mail.
“The small things like that, you don’t think about it,” she said. “There are little things like that that you miss.”
A wind-chime hanging outside the family’s home in his memory can be heard from indoors, another reminder. Despite his physical absence, he carries a big presence with the Jones family.
“We think about what he has done for the community, what an old soul he was,” Jones said. “He never complained (about his condition). He always faced fear, and stared death in the face.
“I think we can all learn from that. Bennett didn’t have a choice; he had to face it. He could have given up a long time ago and he didn’t.”
Reflecting on Bennett’s journey, his mother remembers him as someone who maintained his sense of courage even when there were things his condition made him physically unable to do.
“He was so much stronger than I could ever be,” Jones said. “In just in the first two months of life, he went through more (than most people) can imagine.
“We let Bennett make decisions (about his treatment), and he always wanted to go head first.”
Bennett was not given much hope to live past infancy, so he beat a lot of odds.
After his second chance gave him encouragement, and when that ultimately did not work out like he expected, he fought the good fight.
“He hung on and hung on until we told him it was time to let go,” Jones said.