Strongest Together
Yulia pregnant with Livia, before either were diagnosed with LDS.
Baby Livia and mom, Yulia, after surviving an aortic dissection at 38 weeks pregnant.
Yulia’s family is Strongest TOGETHER
Livia is now a typically active 18-month-old. She has a team of specialists that monitor her Loeys-Dietz syndrome.
Yulia’s Loeys-Dietz story is a picture of how families, medical professionals, and the LDS community are strongest together.
In May of 2020, the world was in quarantine, but Yulia and her husband were living in Queens, New York, and happily preparing to meet their first child. Yulia was in school, and she and her baby seemed perfectly healthy.
But at 38 weeks pregnant, everything changed.
That night in May, Yulia had a strange feeling. “That night, I felt like I was too warm, and I’m usually a person who is wearing socks and pants and everything because I’m cold,” she said. As a result, she had trouble falling asleep and then woke at 5 am struggling to breathe, still overheated, and dizzy. After drinking some water, Yulia sat down and then fainted to the floor, falling on her face and stomach. This woke her husband, who was able to rouse her after a few minutes of unconsciousness.
“My face was bleeding because I fell on it and I was worrying about what happened to my baby since I fell on my belly. I felt better after I woke up, but we called 911 to take me to the hospital just in case,” said Yulia.
They rushed to the closest hospital, where the medical team began monitoring Yulia and the baby. They decided a c-section was needed as Yulia continued to pass in and out of consciousness through monitoring. Yulia recalls, “I was pretty much on and off the whole time. I’d fall asleep and wake up and be in another room. I’d fall asleep and then wake up and remember having my baby.”
Yulia was in terrible pain, but her medical team was reluctant to give her any medications, though she asked repeatedly. Though she was unaware at this point, her medical team was prepping her for emergency heart surgery. Alone, because of Covid restrictions, in pain, and only occasionally conscious, Yulia was desperate to see her baby. “I was hurting everywhere. I wanted to see my baby, but she was in an incubator with fluid in one of her lungs. When my husband was finally allowed in, he pulled the incubator close so I could see her,” said Yulia.
A little later, the cardiologist began giving Yulia an echocardiogram. “He was doing the echo with one hand and calling Mt. Sinai cardiology with the other,” she remembers. “It was at this point I understood that something was definitely wrong. They told me I had to be taken to Mt. Sinai, where they could do the surgery I needed. I had like 20 minutes to look at my baby, Livia, and then leave her there.”
At this point, Yulia’s husband had to decide if he would stay with Livia or go with Yulia since the baby could not be transferred due to Covid restrictions. He decided to travel to Mt. Sinai, which turned out to be for the best because Yulia continued to go in and out of consciousness. “I was hurting everywhere, and they couldn’t give me anything. I remember getting to the hospital and that’s it. I kept falling asleep and waking up in different rooms again. I would wake up and there would be forms for me to sign. Once, I woke up and had to decide what kind of value replacement I wanted – mechanical or pig,” she remembers.
The next time she woke up, it was with a mouth full of tubes. “I panicked. I remember that part!” she said. Later, after the tubes were removed, a cardiologist came to explain what had happened – an aortic dissection – and why. They didn’t know yet that it was due to a genetic condition, but once Yulia’s results showed markers for LDS, her daughter was also tested. Both Yulia and Livia have LDS type 3.
Once Yulia recovered from surgery and a subsequent brain aneurysm surgery, she could attend to figuring out life with a newborn and Loeys-Dietz syndrome.
She searched for support and, since she had been told that LDS was extremely rare, didn’t expect to find much. “I had to start learning more about it. I want to be here for my daughter, and I wanted to know what I should do for her, so I joined a chat for LDS parents,” she said.
Yulia had questions about caring for a child with LDS, but it was also reassuring to hear from others who had experienced heart surgery themselves. Her husband was a huge support, but couldn’t understand all of what Yulia was dealing with emotionally and physically. It was a relief hearing from others because “they mentioned how they felt after surgeries – kind of down, maybe depression – because I was feeling very down too, and alone. But these people had gone through the same things, and now they were smiling and laughing! So I realized I can go through all of this and be happy too.”
As luck would have it, Yulia, who is Russian, happened to join a chat with another LDS mom who also grew up in Russia. Later, they talked one-on-one in Russian, asking questions and sharing experiences as parents of kids with LDS. “Now I know there’s someone who really understands me, and I can reach out for help,” said Yulia.
Both Yulia and her daughter have their own LDS care teams, but otherwise, life looks similar to any with an 18-month-old baby. They both have daily medication and know there are things that they can’t do as the baby grows up, but more or less, they’ve settled into a healthy routine.
Thanks to a medical team that knew how to care for her condition, Yulia’s family is strong today. Yulia continues to learn and connect in ways that will make their tomorrows strong. Yulia’s family, their medical teams, and the LDS community – they are strongest together!
More on Yulia’s incredible story:
https://abc7ny.com/mother-and-newborn-queens-elmhurst-hospital-emergency-c-section/6229611/