By: Brittany Bevis
Being home for the holidays has extra special meaning for equine enthusiasts, Shane and Holt Pope, of South Carolina. Just a few months ago, four months on December 22nd to be exact, we welcomed little Stone Pope to the equestrian family. For those who might not be familiar with Stone’s story, this perseverant little cowboy had to overcome a mountain of health obstacles during the first few days, weeks, and months of his life. Diagnosed with four rare heart defects at a 20 week ultrasound, it was clear that Stone would have a very hard road ahead.
Although the journey has been tough at times, to say the least, it finally culminates with a return home for the holidays to celebrate a first Christmas some doubted might ever come to pass.
“At my 20 week ultrasound, when they check to do the anatomical scan to see if you’re having a boy or a girl, the nurse was looking over everything, and everything looked good,” Holt Graham-Pope says. “The last thing to look at was his heart. The nurse just said that something didn’t look right. They’d seen enough normal to know that this wasn’t normal, so they sent us to a heart specialist.”
“They knew it was definitely a heart defect, but they weren’t 100% sure what it was, so they referred us to another specialist who diagnosed four heart defects. It’s hard to explain, but basically you have two main arteries: the pulmonary artery and the aorta. Both of his came off the right side of his heart, only they were backwards. They sat on top of each other and didn’t make that cross-connection. He also had a hole in his heart and a narrowing at the top of the aorta. They said they were going to wait until he was born and that everything should be fine. It should just be one surgery.”
Up until that point, Pope says their group of doctors and nurses had been very positive, reassuring them that although this was definitely a serious situation it was something that could be fixed. When Stone was born, by all outward appearances, he was a normal, happy baby.
“To look at him, you would never know anything was wrong,” she says. “But, if they didn’t intervene, he wouldn’t have made it past two days. When he was eight days old, he had open heart surgery. The night before the surgery, when the surgeon came in, was the hardest part.”
“That was probably the worst part of the whole journey, because he basically told us there were three choices we could make, but none would be a complete fix. They didn’t know what they were going to do until they opened him up. There were a lot of things wrong in a heart the size of a knuckle. There was so much there that could go wrong, and that was devastating to hear. That was like pulling the rug out from under you, when you thought you had it together.”
The next morning, Stone began what would be a ten-hour surgery. Throughout the process, the family was given promising updates as to his condition. There was even a humorous conversation about a very special material that was used to replace one of Stone’s faulty arteries.
“They replaced his pulmonary artery with a tube that’s actually a cow jugular,” she says. “As soon as the doctor told us that, Shane and I started laughing. He’d never been on the farm, but he was already a cowboy!”
After visiting Stone in recovery and being reassured that all was well, the family headed home for some much-needed food and rest. A few hours later, things took a turn for the worst.
“We saw him the morning after surgery, and he was doing great,” she says. “It was amazing. He was on the lowest blood pressure medication and everything. They told us to go home and get some sleep and come back in the morning. We thought we’d hit a milestone. Then, we got a phone call when we were eating dinner. I’ll never forget seeing my phone with that number from Charleston come across. Still, to this day, my son is here with me, but when I get a phone call from Charleston, it does things to me that make me crazy.”
“His blood pressure dropped really, really low, and he was crashing. They had to up his medication and put him on the highest amount they could for a baby to make him level out and be stable again. The surgeon had been there since five o’clock that morning, and he stayed by his bedside the entire night and throughout the next morning. That was really special for the surgeon to do that, because that’s not a practice that’s done all the time.”
Complications were compounded by pleural effusions, pockets of fluid surrounding the lungs, that made it hard for Stone to breathe and forced his tiny heart to work overtime to compensate. Then, Stone’s body began having a rare negative reaction to breast milk. His taxed system simply couldn’t break down the fat that the milk contained, so he had to be put on a “skim milk” diet. Finally, after being on a ventilator for 14 days and enduring several blood transfusions and hundreds of echocardiograms and ultrasounds, things appeared to be looking up once again.
“The first time he came off the ventilator, it looked like we were just days from going to the step-down unit,” she says. “We almost had the order in our hands. Then, he started having a really hard time breathing. We found out that his left diaphragm was paralyzed, probably due to the fact that there are so many nerves that run there by the heart. He had to go back on the ventilator and have another surgery. It took about a week to get off the ventilator, back on room oxygen, and sent to the step-down unit. Then, we thought we were home free.”
“It took us about three weeks to go home. I didn’t [imagine] how hard it would be to feed a baby. He didn’t know how to take a bottle so they kept saying they would have to put a GI tube in his belly to feed him. Finally, we got a couple of good feeding days in, and we were released. He got a chest infection during that time, but luckily the antibiotics nicked that.”
Now, back at home for his first holiday season, Stone is thriving alongside his three-year-old big sister, Madison.
“Basically, he is the most perfect baby you can imagine,” she says. “He’s a happy baby, and his check-ups have been good. There are several sections of his heart they’ve been looking at, because the pulmonary tubing is already leaking a bit. They keep saying that this is all long term stuff and that he can be a normal kid. They don’t want him to play any contact sports, but everything else is pretty game. He could even be a marathon runner.”
Throughout this entire difficult process, Pope relied on her family, friends, and faith to help her pull through.
“They showed us pictures of what his heart looks like now, and you think, ‘how is that even possible?’ To get past that, you have to believe in miracles, and you have to believe that this was God’s plan. Maybe people on the outside looking in can rationalize it, but that’s the only way I can rationalize it. This was just a complete miracle, because his heart isn’t supposed to work.”
As always in life, timing is rarely perfect. Both being involved in the horse industry, Shane as a horse trainer and Holt as an equine ad designer and photographer, the fall show season is the busiest time of year for the Pope family. Now that Stone was on the mend, the family had to make the decision whether Shane should attend the largest show of the year, the All American Quarter Horse Congress.
“We kept going back and forth,” she says. “Shane waited a week longer to go to the Congress than he should have. This time of year is the one time of year that our customers rely on us for these two months to make a livelihood. All year long, we build up to this one show. As a horse trainer, you sell your horses here, make plans for next year, and accomplish goals for your customers. Stone was in a good place. If he wasn’t, Shane would’ve never gone. We made the decision, as as family, that he needed to go up there.”
“Congress is my busiest time of year. I [worked] for my business but also for myself. When I design, it’s a place to escape. Creative minds kind of do that. I just worked from the hospital and did as much as I could here and there to keep things going.”
Now that the busy show season has concluded and everyone is headed home for the holidays, the Pope family is looking forward to an especially sweet first Christmas for little Stone.
“We have so much to be thankful for,” she says. “This is such a good time to be coming home for the holidays. It’s the time of year when everyone reflects on everything that has happen all year. It’s good that we are home and surrounded by friends and family.”
Looking towards the future, Stone will still need multiple heart surgeries as he grows older. If you would like to help, direct donations may be made at Wells Fargo to the Stone Pope Medical Fund. The account number is 5304548596. The e-mail for the accompanying PayPal account is firstname.lastname@example.org
We would like to wish the Pope family a very blessed Christmas and a healthy and prosperous New Year!