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Posted May 10, 2013 | Leave a comment
Child fights for her life against rare disease
By Kim Walter
Jordyn Hammonds has been a mystery since before she was born.
Doctors first thought the now 9-month-old baby was a boy, which was incorrect. Then she arrived two months early via emergency c-section, only to end up in the University of Virginia's NICU for almost two months.
The young girl has been in and out of hospitals for roughly two-thirds of her life so far. Besides that, she has relied on feeding and oxygen tubes, had four heart catheterizations and an open-heart surgery.
Now, her parents' only hope is that their daughter's veins heal themselves, or that she can receive a lung transplant.
Arielle and Devaughn Hammonds, now living in New Market, had an idea of how life would be with a baby, but nothing could have prepared them for what Jordyn would bring with her.
"I was only seven months pregnant, and we had just gotten married a week before she came ... we weren't ready," said Arielle, a 22-year-old who grew up in Front Royal.
One thing that frustrated the young mother upon her child's birth was that during the pregnancy she had "done everything right." She read the books, ate the right foods, did the exercises and got plenty of rest. When Jordyn did arrive on July 30 of last year, nothing seemed to make sense.
"Three pounds and seven ounces," Devaughn, 21, said, looking at his daughter on Thursday afternoon. "She was tiny."
The couple went to the hospital because Arielle had realized her baby wasn't moving. She said the girl would always wake her up with movements, and kick against her stomach while she sat at a desk in class. Upon arrival, Jordyn's heartbeat was low and she wasn't breathing, so they were rushed to Rockingham Memorial Hospital.
The moment after giving birth was far from what Arielle had pictured.
"I didn't get to hold my baby, they had to take her away," she said. "I got to rub her little leg ... I was so amazed by her right away."
Doctors weren't able to tell the couple much until they arrived at UVA. From the end of July to September 6, Jordyn remained in the NICU where she was treated for a variety of issues including chronic lung disease, acidic blood and low glucose levels. It was also discovered that Jordyn had an extra chromosome - Trisomy 15q, - which explained why determining the baby's gender was complicated.
The Hammonds also were told that most babies with the extra chromosome don't make it to birth, and if they do, not much longer beyond that. They also heard a list of things Jordyn would likely never do on her own, like breathing, eating, walking or talking.
However, Jordyn began to defy some of those limitations.
When presented with the options of keeping the baby on a breathing machine, or taking her off and possibly "holding her during her last breaths," the couple decided to take a risk. Thankfully, Jordyn didn't miss a breath, and the proud parents were able to take her home.
There, she was happy and relatively healthy until she became consistently out of breath at the end of October.
Back at UVA, doctors at first thought the child had pneumonia, but later realized it was Para influenza. They predicted she would be over the illness in a week after being put on an oxygen machine, but that week turned into a month.
An echo was done on Jordyn's heart, which revealed that her pulmonary veins were abnormally small. A CT scan later confirmed that not only were her veins small, but they were closing.
Jordyn was diagnosed with a congenital heart disease called Pulmonary Vein Stenosis. Essentially, her heart isn't able to get the oxygen-rich blood that it needs to function. The blood flow is instead backing up on her lungs.
The Hammonds started doing all the research they could about their daughter's condition. Arielle, who graduated from Warren County High School at just 16-years-old while working a part-time job, always had a desire to learn. Her baby's health was no exception.
"That's my daughter," she said. "I want to know everything about what's going on so I can help her no matter where we are."
The cardiologists and genetics experts at UVA were at a loss.
"The doctor at UVA said that in his 20 years of being a cardiologist, he's only seen three kids like Jordyn," Arielle said. "I asked him what happened to them, and he just put his head down. He didn't want to tell me, but I already knew."
After further research, the pair learned that Boston Children's Hospital had programs to work with babies and children with PVS. The hospital accepted her records, and they went to Boston in December.
Right away, Jordyn had heart catheterizations followed by open-heart surgery. Arielle said the recovery was extensive, and they were in Boston until March. Doctors still are unsure of Jordyn's future, but her unexpected progress has her parents feeling hopeful.
"You look so pretty," the mother said to her daughter in a recent interview, pausing to stroke Jordyn's hair. "She loves to smile."
Jordyn is one of two babies with PVS in Boston who can eat on their own. There are 28 others who require a feeding tube. It's improvements like this that allowed the family to come home for three weeks, until they return for another procedure on May 28.
In the Hammonds' apartment, baby Jordyn's breaths can be heard since she's hooked up to a machine. A white board on the wall lists her medications and a schedule for when to take what.
Family pictures and smiles cover the wall above the couch. Hanging next to the door is Jordyn's first outfit - doll's clothing.
While home, Jordyn will get to see more of her extended family, including Devaughn's parents, who live in North Carolina. However, it's not just family that is interested in the little girl.
A Facebook page, "Team Jordyn," was started back in November to update people from around the world on her ups and downs via status updates and pictures. More than 2,000 people follow the page, and Arielle said she only knows about 200 of them.
"Jordyn is so very loved," her father said. "We've heard from people who say they haven't prayed in years, and they tell us that they pray for our baby every day."
Arielle thinks her daughter's strength has attracted the attention of so many followers.
"I mean she's been through so much, and she just keeps smiling, keeps pushing," she said. "She has to be strong. I don't know if she would be here right now if she wasn't."
The whole experience has brought the couple closer, as one may struggle with emotions or stress, so the other "picks up some slack." Both feel that they've become better people as well.
"It's changed me as a person, a man, a father," Devaughn said. "This has opened my eyes to life itself. To see her laugh and smile every day ... you have to do whatever you can to make that stay. That's just what it's all about now."
Moving forward, the couple plans to place Jordyn on the list for a lung transplant. If she goes without one, the baby's heart might overwork itself, and it could stop. Conversely, a transplant could result in rejection and a whole other list of infections.
Either way, the couple needs to hurry back to Boston and keep praying for the best.
Just to travel to the city costs them about $500, and Arielle said the bill for Jordyn's stay in NICU alone was $30,000. Even though the mother is part of the Army Reserves, she won't be able to reenlist as she approaches the end of her first five years.
"I wanted to reenlist because I'm up for sergeant, but that would mean going to a four week class in Wyoming, and I can't leave my baby," she said. "Her weeks, her days, are so precious. We never know what could happen ... so I'll have to put that on hold."
In the meantime, though, both parents are enrolled in online classes - Arielle should be receiving her diploma soon, and made the dean's list last semester.
The couple knows they will have to face the finances at some point, and they need help. One can donate by going to the Facebook page for Jordyn, and the couple will hold a fundraiser on Saturday, May 11. Individuals can text "WISH" to 80077 to make a $5 donation, which will be added to their cell phone bill.
The Hammonds have tried the fundraiser before, but it wasn't very successful. Arielle would also like to host an actual event in her hometown to raise money and sell "Team Jordyn" bracelets.
"I like to cook, and so does my mom, so I thought we'd have a dinner and make a fundraiser out of it," she said. "But, no luck so far in trying to find a place. We can't afford to rent a space out, but we only have so much time before we have to move."
The Hammonds could be in Boston for more than a year, even if Jordyn gets a transplant relatively soon. The rent there is close to $3,000 a month.
"Every day we pray for a miracle," Arielle said. "With Jordyn, you know God is working. Nothing else can explain what she's gotten through and why she's still here."
To learn more about Jordyn, check out the "Team Jordyn" Facebook page. For more information on how to donate to the family, send an email to email@example.com.
Contact staff writer Kim Walter at 540-465-5137 ext. 191, or firstname.lastname@example.org
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