When Jessica Johnson, 36, began experiencing working and heartbeat, quickly made an appointment to see a cardiologist. A CT scan showed that it had two aortic aneurysms that could possibly require surgery.
As a child, Jessica was diagnosed with Marfan syndrome – a rare genetic disorder that affects connective tissue in the body and can affect various systems, including skeletal, cardiovascular and eye systems. But until then, she never had problems with her aorta, the main artery that carries blood from the heart to the rest of the body. In people with Marfan disease, an aneurysm or balloon can occur on the aortic wall and, if left untreated, can lead to potentially deadly anatomy or rupture.
A few days after her diagnosis, she received the most amazing news of all – waited for her first child.
“To get the news that I need an aortic surgery and now I was pregnant. It was all so intense,” he said.
This was the beginning of Jessica’s trip to Uthealth Houston.
He arrived at doctors in the Canyon Lake area near San Antonio, where he lived for prenatal care, but no one would establish her as a patient because she was considered too high because of her genetic condition.
“I went to four or five doctors who all confirmed I was pregnant, but I was told that I didn’t think they would survive pregnancy because my heart was not in good shape. It was the most helpless feeling,” said Jessica.
In the middle she lost her brother, who also suffered from Marfan’s syndrome, in an aortic dissection.
“After losing my brother, I really felt that I had to fight for this pregnancy. I felt like it was worth the risk,” he said.
He finally met a doctor who contacted Rana Afifi, MD, an vascular surgeon with Uthealth Houston Heart & Vascular, considered an expert in managing young women with aortic diseases during pregnancy.
“I remember getting a call from Dr. Afifi and told me that I had to make my way to Houston right away. I looked at my husband and knew we found our team,” he said.
“Jessica was referred by her doctor to Austin. I wanted to be evaluated by our team specializing in complex aortic diseases and in particular in pregnant women with aortic disease,” said AFIFI, who is an Associate Professor of Vascular Surgery in Cardiovascular Surgery Houston. “I was worried that she could develop complications that could be life -threatening and I knew that we could not manage it without seeing it and evaluating it, I wanted to examine it, proceed with its visualization, and then decide with our expert and expert team.”
“When we arrived in Houston, he had a whole team waiting for us. It was a lighthouse of light in such a complex and difficult time,” Jessica said.
Jessica was admitted to Baha Sibai, MD, a professor in the Department of Obstetrics, Gynecology and Reproductive Sciences with McGovern Medical School.
When I first met Jessica, she was 16 weeks pregnant. I explained to her and her family that she had a life -threatening situation and could potentially face many challenges throughout her pregnancy, given the normal change that her body would pass, but I assured her that she was in the best medical center that cares about high -risk hearts.
Baha Sibai, MD, Monitoring Mother-Mother Medical Medicine at Memorial Hermann-Texas Medical Center
Both Afifi and Sibai spent the following hours explaining the potential dangers that Jessica and her husband could face both Jessica and their unborn son. For the first time since she discovered that they were cultivating their family, both Jessica and her husband felt supported.
“The loss of this pregnancy was never an option for us and for the first time we received nothing more than support for this decision. The whole team took us and told us that they were going to do what they could not only to keep me safe, but also my son,” he said.
Jessica spent the following months in Houston inside and outside the hospital for follow -up.
On October 21, 2023, two months before its initial expiration date, hand-in-hand with Afifi, surrounded by a team led by Sibai, Jessica handed her son Damian through the caesarean section.
A week after delivery, the tests showed that the size of its aortic aneurysms had remained the same.
According to afifi, the size of the aorta can change during pregnancy due to increased blood flow. During pregnancy, it is more common and dangerous if there is an increase in the aortic diameter because it increases the risk of tearing the inner layer of aorta, causing anatomy or rupture, which can be life -threatening.
After delivery, the size of the aorta can remain the same, a decrease in size or enlargement, so ongoing monitoring is significant.
“This story highlights the critical importance of having a specialized group for the management of young women with aortic disease, especially those who are pregnant or planning to become pregnant,” said AFIFI, who monitors the heart and vascular surgeon at Memorial Hermann-TMC. “Each case has unique challenges, requiring a personalized care plan. Some patients may need aortic repair before or during pregnancy, while others may face risks that require alternative counseling and decision making.
The family is still waiting for the results of his tests to determine if Damian has a Marfan syndrome.
“Damian is really a baby miracle,” Jessica said. “He hits all his milestones. He has no physical or spiritual delays. He’s a happy baby and I couldn’t ask for a better situation.
Jessica and her family have moved to Utah ever since. It is currently in a wheelchair due to bone wear and hip pain. She will travel to Houston and continue her care with Afifi where she will be closely monitored. If afifi has increased the size of the aneurysm, it will undergo aortic repair surgery.
“I will always travel back to Houston for my care, because I know I am in good hands. It is a challenge to raise a child who is a wheelchair, but I am mentally in a really wonderful place and I take everything one day at a time,” Jessica said.
