Related NewsChild fights for her life against rare disease
Parents moved from valley to Boston where their daughter is being treated for congenital heart disease
By Kim Walter
Although there have been a few issues since moving to Boston, Arielle Hammonds is confident that it was the right decision for her 13-month-old daughter, Jordyn.
Mrs. Hammonds, of Front Royal, and her husband Davaughn Hammonds, of North Carolina, moved to Massachusetts in May so Jordyn could receive top-notch treatment for her pulmonary vein stenosis.
PVS, a form of congenital heart disease, makes it difficult for Jordyn's heart to get the oxygen-rich blood it needs. Instead, the blood flow backs up on her lungs.
Since being diagnosed at the end of 2012, Jordyn has been in and out of hospitals, receiving heart catheterizations every four weeks. She had open heart surgery at Boston Children's Hospital, where the family stayed until March of 2013.
The family was able to come home to the Shenandoah Valley for several weeks before returning to Boston. There, Jordyn would get more treatment, and potentially be put on a list for a lung transplant.
Previously, Jordyn was one of two babies with PVS in Boston who could eat on their own. However, upon getting to Boston, doctors were concerned with Jordyn's inability to keep food down.
"They did all kinds of stomach tests, but things kept coming back normal," Mrs. Hammonds said during a phone interview on Friday. "The bottom line was that she needs the nutrition so she can keep growing. They did the surgical procedure and put a feeding tube in her stomach."
Mrs. Hammonda pointed out that for a normal, stronger person, the procedure wouldn't take much recovery time. However, "every surgery is huge for Jordan," given how small and fragile she is. As a 9-month-old, Jordyn weighed in at about 8 or 9 pounds.
Following the surgery, Jordyn received another heart catheterization. Mrs. Hammonds said that her daughter was due for one anyway, and she'd received so many before that the couple didn't think much of it.
For some reason, though, it took the child close to three weeks to recover.
Jordyn turned a corner in June. Her breathing tube was removed, and she seemed to be gaining a bit of weight.
The young parents were excited when they learned that Jordyn might be able to be released from the hospital and the family could live together in Boston. Right when things were really looking up, though, Jordyn started having seizures -- a possible result of taking her off a few medications.
Jordyn had three seizures, one after another, each lasting for about a half hour, Mrs. Hammonds said.
"That was new," she added. "And it was scary."
During the last seizure, doctors were able to hook Jordyn up to a few monitoring devices to see where they were coming from. The results weren't what they were expecting.
"They found out that Jordyn actually had a stroke some time between May and the beginning of July," Mrs. Hammonds said. "But we couldn't tell ... she wasn't acting differently, didn't lose any of her abilities."
The doctors weren't overly concerned with the stroke's impact on the girl, but they did want to take a few measures to ensure that it wouldn't happen again. She now takes aspirin daily.
Since then, things have continued to look up for Jordyn.
The child hasn't had a heart catheterization in nine weeks- a record amount of time. She's also gained an additional 4 or 5 pounds.
Jordyn goes to therapy regularly, to work on her physical and communication abilities. Mrs. Hammonds said it amazes her every day when her daughter picks up new skills.
"Jordyn is such a blessing," she said. "Through all of this, our baby has kept a smile on her face. She's just so happy all the time."
The Hammonds hope to visit Virginia for the holidays. While they would love to move back permanently -- the cost of living in Boston is higher than they'd like-- they know it can't happen without Jordyn being in a "good place," health-wise.
Jordyn's story continues to reach and inspire more and more people every day. The number of likes on her "Team Jordyn" Facebook page has grown to more than 4,800.
Mrs. Hammonds decided to make her daughter's page public, with hopes of spreading PVS awareness to more people. However, on Friday morning she woke up to about 300 "hurtful, rude and unnecessary" comments about Jordyn.
"I went through and deleted each comment, and blocked each person that said something mean," she said. "I know there's always going to be negativity, but Jordyn has been through more than any average adult ... I don't understand how someone could be so hateful toward her."
Of course, for every bad comment, came about 30 positive comments, she added.
At this point, the Hammonds would still like to see their child heal on her own, and avoid a lung transplant. While it could have positive results, it could also create a whole new list of infections and complications.
"We can see the treatments working ... it's not a cure, but I think Jordyn is in the right place to do great things," she said. "It's so wonderful to see how many people care, and I love that they're learning about Pulmonary Vein Stenosis through her story."
To learn more about Jordyn's story, or to contact the Hammonds with any fundraising or support ideas, go to the "Team Jordan" Facebook page or email Arielle.Jordan@yahoo.com.
Contact staff writer Kim Walter at 540-465-5137 ext. 191, or firstname.lastname@example.org