Many people complain about the hassles of traveling with kids, but for many of us, the worst that happens on a flight is a diaper blow-out or side-eye from an annoyed seat mate.
For families who have children with medically complex needs though, traveling is a much different experience. Instead of enduring small inconveniences, complications can mean the difference between life and death. From transporting medical equipment to flying after surgery to administering feedings and medications mid-flight, flying with a child with medical needs can be a completely overwhelming experience.
The truth is, traveling might feel like a mundane experience for many people, but you never know what the person sitting next to you on the plane is going through. I talked to three families to hear more about the challenges of traveling with complex medical needs to better understand what they go through.
For Courtney Hayes of Gilbert, AZ, flying for the first time with her son, Jude, now 3.5 months old, was a very nerve-wracking experience. Jude had already undergone open heart surgery only four days after he was born due to a congenital heart defect. Hayes flew with her son when he was only five weeks post-surgery.
His condition, coupled with the fact that he also has a syndrome which causes him to have low platelets, a weaker immune system, and a cleft palate that makes feeding difficult, meant that his first flight would be more challenging than most.
“It was very intimidating,” says Hayes of the flight. “On the outside, Jude looked like any other baby, but being 5 weeks out of open heart surgery, I was very nervous and scared to fly. I think any mom who flies with an infant encounters this stress, but I feel like mine was compounded with the fact that I was transporting a medically fragile baby with me. I wasn’t sure how the altitude would affect his heart. We were cleared, but you just never know.”
Hayes had two very different experiences while flying with her son. On one encounter, while flying American Airlines, she was treated poorly by three different staff members. She endured heavy sighs when she asked if she could board early to get her son settled, and one check-in attendant was so rude that Hayes paid an unnecessary $ 50 bag check fee just to avoid interacting any further with her (Hayes is a card member, so she wasn’t required to pay to check bags).
On another flight with American Airlines however, she purchased a first-class ticket to make traveling with Jude easier. She was assisted by an employee who helped her organize her bags and get everything labeled. She had eight pieces of luggage (since she had moved cross-country for Jude’s surgery) but the employee didn’t charge her extra.
“I was so grateful,” she remembers.”When you have a child that is medically complex, just receiving good customer service and feeling like you are being cared for goes a long way.”
She also found it difficult to balance the fact that she had real needs to contend with for her son, but didn’t want to “take advantage” of the situation by explaining his surgery to every single staff member. Instead, she wishes that kind and compassionate treatment was the baseline and it didn’t take informing staff that her son had just had open heart surgery to get some assistance.
Katrina Young and her husband Eric from Norfolk, Virginia, actually missed a flight due to complications while attempting to travel with a breast pump and supplies. Their son Ethan, 1, was born with heterotaxy syndrome, which affects multiple organs and requires him to have supplementation from a feeding tube with pumped breast milk.
While flying with Ethan’s equipment, which included five liquid medications, a breast pump, pulse oximeter machine to monitor his oxygen, feeding pump, and a cooler filled with approximately 30 ounces of breastmilk, they breezed through security during their departure, only to be stopped on the second leg of their flight. TSA insisted on pulling out every piece of equipment they had, even dusting Katrina’s breast pump and scanning each bag of breast milk separately.
“We stood being watched at the security line for approximately 30 minutes with our 3-year-old daughter and 8-month-old baby who had just undergone a huge surgery 17 days before,” says Katrina.
To make matters worse, Ethan needed another feeding during this time (his medical condition requires strict 3-hour feedings) and the attendant refused to release the already scanned bag of milk, claiming he needed everything checked first.
The family ended up missing their flight and Katrina felt utterly humiliated by the process.
“Not only was it frustrating but, also, for some reason, it embarrassed me,” she confesses. “It was embarrassing to me that everyone walking by was given a clear view of my breast milk and breast pump. Perhaps it shouldn’t have, but it did.”
The Keeton family, whose son Weston passed away in March of 2014 at the age of 7 from complications due to his congenital heart defect, traveled for two reasons: first, to enable their son to come home after spending most of his life in the hospital. And second, to visit Disney World through the Make-a-Wish foundation.
Traveling with Weston meant transporting a central line delivering life-saving medication that could not be disconnected, oxygen, 20-plus medications, G-tube supplies, and formula. It also meant coordinating all travel so that his oxygen did not run out, he didn’t require a feeding at take-off or landing time, and moving him every hour so that fluid did not accumulate in his lungs.
Mom Julie also had to ensure that the family took along a doctor’s note wherever they traveled, as staff tried to insist that his central line be disconnected, a move that could have cost Weston his life. Fortunately, Julie says that by calling ahead, informing staff of Weston’s needs, and arriving early to ensure ample time for feedings and equipment transfers, they always had a positive experience while traveling American Airlines. On one occasion, Weston and his siblings were even invited to visit the cockpit and meet the pilot.
“We are thankful to everyone that helped make our trips so well orchestrated,” she says. “It takes a village and Adam and I are so thankful for the folks that helped us.”
The Muhammad family from Philadelphia, PA (Kheli, Omar, and kids Samad, 7, and Masieh, 13) have faced double scrutiny from long waits through security and tensions because of their last name. Despite being told about a special program called “TSA Cares,” which is supposed to send a personal attendant to accompany a family with special needs through security and calling to request an attendant, no one actually showed up to help them when it was time for their flight.
Muhammad explains their son Samad has a congenital heart defect, Long QT syndrome, and a history of hypoglycemia and seizures. He also has an Implantable Cardioverter Defibrillator (ICD) in his chest, which means he is unable to go through any type of metal detector. Because of that, both he and his equipment are hand-checked out in the open, without any sort of privacy.
“My son is almost 8 now,” she explains. “He notices when people treat him differently and it really bothers him. As adults, we can handle the stares and whispers but no child should have to be subjected to that.”
The one thing that families of children with complex medical needs hope others realize is that underneath the tubes and the oxygen and the equipment, is a child on a trip.
“I wish others realized that children with special illnesses just move a little slower, they might have odd tubes or wires or oxygen but, underneath, they are still children and we need to treat them as such,” says Keeton.
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