In Magazine
Story by Lea Rittenhouse | Photos by Rose Bailey
Like most kindergartners, 5-year-old Sydney Mcglothlin loves dressing up and playing “princess” when she’s not at school or dance class — but she’s been through something that sets her apart from others her age — she’s already overcome three open-heart surgeries.
Her mother, Lindsay Mcglothlin, was working as an ultrasound tech at Good Shepherd Medical Center when she learned she was pregnant with Sydney in 2007. In fact, she was the one who confirmed her pregnancy since she had immediate access to the equipment.
Each time she had a check up, Lindsay would perform an ultrasound on herself to take a picture for her pregnancy journal, but a few months in, she noticed something wrong with Sydney’s heart.
“I had looked at her heart before but she was just so little I couldn’t really tell,” she says. “I immediately thought ‘something is wrong. It doesn’t look right. I ignored it for a little while but went back and saw it again. There was this gut feeling in me that was so strong — I knew something was wrong.”
She showed the ultrasound pictures to her radiologist and her family, but they told her she was just worrying herself.
“I was even trying to talk myself out of it, but you know, a couple days would go by and I’d look again,” she says while adding she decided to make an appointment with her doctor. “I just prayed the whole time, please let him take me seriously, because if he was the last person that said ‘don’t worry,’ I probably would have tried to shove it off or not think about it, and who knows what would have happened.”
This time, though, Lindsay’s doctor trusted her intuition and sent her and her husband, Joseph, to a perinatologist in Dallas for an ultrasound.
“He put the transducer down on me, and he put color on the heart actually, which shows the blood flow … one side of her heart didn’t have blood flow going through it and the other side did,” she describes. “I was right, but then I was so mad because I didn’t want to be right.”
Because of the structural malfunctions of Sydney’s heart, the perinatologist sent Lindsay and Joseph to speak with cardiologist the same day, who performed an echocardiogram on the baby.
“They did the echo and sat us down in the room and said her condition… ‘she’s going to require three open-heart surgeries and they’re in stages,’” she recites. “It was a complete nightmare. The whole time it was like floating.”
The three-surgery remedy is called the Fontan Pathway.
The following days after the news, Lindsay says she was in shock and grieved the thought of having a healthy baby. She remembers entertaining thoughts like “I didn’t want to find it. Why did I have to find it?”
Sydney was diagnosed with Hypoplastic Right Heart Syndrome, a life-threatening congenital heart disease where the child’s right side of the heart doesn’t function. Sydney is in a group of patients that have what is collectively known as a single ventricle. The heart has four chambers to it: the right and left atrium at the top, and the right and left ventricle at the bottom, says Dr. Tim Thomas, Sydney’s pediatric cardiologist out of Dallas.
“When a child only has one ventricle, they need to use that one ventricle to pump blood out to their body — that requires a series of operations to get blood to their lungs effectively,” he says.
About 15 percent of children born with Sydney’s condition don’t live past year one, even in the best heart centers in the United States, he added.
After finding Sydney’s heart problem, the McGlothlin’s went to Dallas one to two times a month for a check up. Since she would give birth there, the doctor’s decided Lindsay would remain in Dallas after 37 weeks, so she could get to the hospital quickly.
But Sydney changed the plans. Her heart rate remained at 175 compared to the normal rate in the 130s after a check up at about 34 weeks, so they sent Lindsay to Dallas to be on monitors until Sydney was born.
“Those two and a half weeks I was at the hospital I was getting ultrasounds three times a week,” Lindsay says. “The heart rate never went down. It just kept climbing, and then she started having arrhythmia sort of things.”
Since the heart rate remained high, the doctors decided it was time for Sydney to be removed from the womb at 36 weeks.
“I don’t really know to this day what happened because it was all kind of a blur,” Lindsay says. “She went into the NICU and the doctors were giving her this medication to keep one of the blood vessels open because it actually closes after birth … it’s a hormone that the mom produces to keep it open but when you deliver, the hormone diminishes and the little artery closes.”
Without the medicine the essential artery would close, leaving Sydney with no circulation, leading to death. She had her first open heart surgery at five-days-old — the Norwood Procedure — to replace the malfunctioning artery with a synthetic tube. She recovered well with only minor complications.
“The first one was crazy and very emotional, because she’s a little baby. She doesn’t know anything different. She sitting there with tubes everything and she’s smiling,” Lindsay says. “She went home and grew and was perfectly healthy.”
She had her second operation, the Bidirectional Glenn, at six-months-old. The superior vena cava was taken off the heart and plugged it into her pulmonary arteries that go to the lungs.
Her third surgery took place in July 2011, but this one was different because Sydney was old enough to be aware of the operation. The doctors took the bottom vein off and plugged it into her pulmonary artery to go to her lung, so she doesn’t have anything going to the right side of her hear.
“She knows she had surgery. She thinks they unzipped it down and fixed it up and zipped back up, and she was all better,” Lindsay says adding Sydney called the medical tubes “noodles.”
She recovered seamlessly, completing the surgery series.
“I have always been amazed at how well she has recovered,” Lindsey says. “That can’t be a kid with half a heart, but she is.”
Dr. Thomas says if children with Sydney’s condition live past 5-years-old, they generally have a stable period for five to 10 years.
Since completing her surgeries, Sydney visits the cardiologist every six months for a check-up.
“The doctor sometimes tells me she’s good now, but later because of all scar tissue she could develop some kind of rhythm problems with her heart and they’d have to put a pacemaker in,” Lindsay says. “Since there’s nothing else they can do for her, they would have to do a heart transplant if she starts going into heart failure, because the left side of her heart is the only thing that’s working right now.”
Although the doctor’s say Sydney won’t be able to participate in competitive sports because of her condition, Lindsay says she is going to let Sydney attempt what she wants. “If struggles at it then okay, we’ll just move on,” she says optimistically.
For now, though, Sydney is a happy, energetic, caring kindergartner attending Caldwell Elementary, a fine arts elementary school in downtown Tyler.
“The coolest thing that I’ve noticed, and not just from Sydney, but all the other heart kiddos too, is they have such a huge heart. She is so caring, it’s amazing,” she says.
Last year, Lindsay’s co-worker recommended she apply for Sydney to be a Make-A-Wish recipient, but she didn’t think Sydney would qualify. After consulting with Dr. Thomas, though, she learned the Make-A-Wish program isn’t just for children who have a terminal condition.
“Their criteria is that the child needs to have a life threatening illness. That doesn’t have to mean we expect the child is going to die, it just means that their condition is such that if the child did die, it wouldn’t really be surprising from a medical stand point,” he says. “Since Sydney is in that group of patients that could have abnormal rhythms really at any moment, she qualifies for Make-A-Wish.”
After a long application process, Lindsay learned Sydney had been accepted and was shocked at the news.
“We decided Disney World because she loves to dress up and play princess,” Lindsay says. “She got to see the princesses and she got the VIP treatment. That was just an unbelievable trip and she still talks about it even to this day.”
Lindsay is a part of a local chapter of Amazing Little Hearts, an organization established to bring awareness to congenital heart disease, fund raise for research and to comfort families affected by the cardiac conditions.
Although she believes support from others who have experienced a similar situation is vital to persevering through pediatric heart conditions, she says no one could have prepared her to see Sydney after surgery.
“You feel helpless. As a mother you protect. You have to keep her from hurting and you have to keep her from any danger, but as a heart mom — you can’t,” she says while fighting back tears. “And you have to do that three times.”
“I want to say that everything will be okay, because that’s only human nature to say that everything will be okay, but it’s not always okay,” Lindsay says. “Every day I was waking up touching her, making sure she was still living, because you just didn’t know. I didn’t know how quickly she could be taken away.”
Even though Sydney can play and look seemingly healthy and normal, she’s still different.
“It’s a different world,” Lindsay says. “She knows basically what’s going on, but I don’t know how much she grasps it.”
“Mom, I have a special heart and the doctor fixed it so it’s all better,” Sydney says.
