Baby Lucas' Story
Lucas Alexander Hines shouldn't be alive today.
Google "pulmonary vein stenosis" and one of the first hits that comes up is a reference to a journal article:
"Pulmonary vein stenosis is a fascinating yet frustrating and difficult to manage condition with an exceptionally high mortality rate."
This is what Baby Lucas Hines faces, finally having been diagnosed after months of surviving, despite having been born at only 26 weeks and 5 days of life. As soon as the insurance and medical paperwork is cleared, Lucas will be flown in what is essentially an ambulance in the sky to Boston for emergency surgery to attempt to save his life. We need your help to make this possible.
Lucas was a happy surprise to his parents, Richard and Kaci Hines, and their two daughters Rowan, 7, and Avery, 4—along with his twin brother, Liam. Kaci, an RN at UAB's Bone Marrow Transplant Clinic, learned she was pregnant in February 2014. She and Richard, a business officer at UAB, visited their OB/GYN in April for the standard 20-week visit and the exciting ultrasound, to determine the baby's sex.
The entire Hines family was excited to learn that the baby was not one baby, but two babies—twin brothers! The happy news was immediately dampened by the knowledge that one boy was growing faster than the other. Lucas, the smaller son, was diagnosed with intrauterine growth restriction, with reversed diastolic blood flow. He wasn't growing at the rate he should have been.
The family faced some impossible decisions. Ultimately, they never had to make those choices. One week later, Kaci had an ultrasound that resulted in her being admitted to the hospital. That was June 26. She wouldn't be back home until October 1.
On July 5, twins Liam and Lucas were born into the NICU at 26 weeks, 5 days. Liam's weight: 2 lbs. 4 oz.; Lucas: 1 lb. 7 oz.
Liam was, as proud papa Richard says, what's known as "a 'Feeder and Grower' in the NICU world—the perfect NICU baby." On Oct. 1 he went home, weighing nearly 7 lbs, and though facing a homebound quarantine for his own safety, Liam was in the clear.
Lucas, meanwhile, fought for every breath. Lucas has gone from being was on an oscillator ventilator, then a conventional vent, then a nasal canula, then back to being intubated because of bronchopulmonary displaysia. There have been many unknowns in Lucas' four months of life, but his parents have known since birth that he has had patent ductus arteriosus (a hole in two blood vessels between his heart) with a coarctation, or narrowing, of the aorta (a congenital heart defect). His parents rarely left his side, despite having two young daughters to care for, and two full-time jobs.
The UAB doctors caring for Lucas knew they'd have to do surgery of some type, but weren't sure where to start, or when.
The first week of November showed what seemed like a breakthrough in the form of a diagnosis. Unfortunately, it was dire: Pulmonary vein stenosis.
From Boston Children's Hospital website: "Pulmonary vein stenosis is a rare condition in which the veins that carry oxygen-rich blood from the lungs back to the heart are narrowed ... Some children will need many interventions—including interventional catheterization or surgery—to restore blood flow to the heart, as pulmonary vein stenosis tends to recur and even worsen over time. While a lung transplant does become a necessary treatment option for some children, not every child with the condition will need one."
Holding Out Hope
Boston Children's is one of the only hospitals in the world with a program dedicated to treating this disease. They have accepted Baby Lucas' case and plans are in the works for he and his parents to fly to Boston ASAP for this delicate surgery on a tiny and delicate human. Meanwhile, plans have to be made for how to keep his still vulnerable brother Liam safe—he cannot risk infection or illness in an airplane ride.
We at UAB are starting this site in an appeal to anyone who's ever sat up at night and listened to a loved one cough and struggle to breathe, and felt helpless. Anyone who can even imagine having a baby and not being able to hold him for months so as to not compromise his fragile life. While the Hines family has insurance, any % of unending medical costs not covered by that insurance are overwhelming—and don't begin to include travel, care for siblings, or the cost of a family split in half and being forced to live in two locations to try to keep both their boys alive.
Please consider a donation to the Hines family to help defray the costs of innumerable medical treatments for Baby Lucas. This is going to be a long, tough holiday season for them. Anything you can provide is so meaningful to this sweet family. Words can't say enough to express their gratitude.
***Funds go to the Hines Family (thank you!). If more $ is raised than is ultimately needed (though there is no current pricetag for this unresolved issue), donations will be made to fund pulmonary vein stenosis research.***
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