When Jessica Johnson, 36, started to expertise labored respiration and coronary heart palpitations, she rapidly made an appointment to see a heart specialist. A CT scan confirmed she had two aortic aneurysms that would probably require surgical procedure.
As a toddler, Jessica was identified with Marfan syndrome – a uncommon genetic dysfunction that impacts the connective tissue within the physique and might impression varied methods, together with the skeletal, cardiovascular, and ocular methods. However till then, she by no means had points along with her aorta, the primary artery that carries blood from the center to the remainder of the physique. In folks with Marfan’s illness, an aneurysm, or ballooning, can happen within the wall of the aorta and, if left untreated, can result in a probably lethal dissection or rupture.
Simply days after her analysis, she acquired probably the most shocking information of all – she was anticipating her first youngster.
“To get the information that I used to be needing aortic surgical procedure and now I used to be pregnant, it was all so intense,” she mentioned.
That was the start of Jessica’s journey to UTHealth Houston.
She reached out to physicians within the Canyon Lake space close to San Antonio the place she lived for prenatal care, however nobody would set up her as a affected person as a result of she was thought of too excessive danger on account of her genetic situation.
“I went to 4 or 5 physicians who all confirmed that I used to be pregnant, however they instructed me they did not assume I might survive the being pregnant as a result of my coronary heart wasn’t in fine condition. It was probably the most helpless feeling,” Jessica mentioned.
In the course of all of it she misplaced her brother, who additionally suffered from Marfan syndrome, to an aortic dissection.
“After shedding my brother, I actually felt like I wanted to struggle for this being pregnant. I felt prefer it was well worth the danger,” she mentioned.
She lastly met with a doctor who put her in contact with Rana Afifi, MD, a vascular surgeon with UTHealth Houston Coronary heart & Vascular, who is taken into account an knowledgeable within the administration of younger girls with aortic ailments throughout being pregnant.
“I keep in mind getting a name from Dr. Afifi, and she or he instructed me I wanted to make my option to Houston instantly. I checked out my husband and we knew we discovered our staff,” she mentioned.
“Jessica was referred to me by her doctor in Austin. I needed her to be evaluated by our staff who focuses on advanced aortic ailments and particularly in pregnant girls with aortic illness,” mentioned Afifi, who’s an affiliate professor of vascular surgical procedure within the Division of Cardiothoracic and Vascular Surgical procedure with McGovern Medical College at UTHealth Houston. “I used to be apprehensive that she might be creating issues which may be life threatening, and I knew we might not have been in a position to handle her with out seeing and evaluating her. I needed to look at her, go over her imaging, after which determine along with our staff of consultants and Jessica on our plan for her care.”
“Once we arrived in Houston, she had a complete staff ready for us. She was a beacon of sunshine in such a sophisticated and tough time,” Jessica mentioned.
Jessica was launched to Baha Sibai, MD, professor within the Division of Obstetrics, Gynecology, and Reproductive Sciences with McGovern Medical College.
After I first met Jessica, she was 16 weeks pregnant. I defined to her and her household that she had a life-threatening situation and would probably face many challenges all through her being pregnant given the physiological modifications her physique would undergo, however I assured her that she was in the very best medical middle that cares for high-risk cardiac and obstetric sufferers.”
Baha Sibai, MD, attending maternal-fetal drugs doctor at Memorial Hermann-Texas Medical Heart
Each Afifi and Sibai spent the following few hours explaining the potential dangers Jessica and her husband may face for each Jessica and their unborn son. For the primary time since discovering out they have been rising their household, each Jessica and her husband felt supported.
“Dropping this being pregnant was by no means an choice for us, and for the primary time, we acquired nothing however assist for that call. The whole staff took us in and instructed us they have been going to do all the pieces they may to not solely maintain me secure, however my son too,” Jessica mentioned.
Jessica spent the following few months in Houston out and in of the hospital for monitoring.
On October 21, 2023, two months earlier than her unique due date, hand-in-hand with Afifi, and surrounded by a staff led by Sibai, Jessica delivered her son Damian by way of cesarean part.
Per week after supply, exams confirmed the scale of her aortic aneurysms had remained the identical.
In response to Afifi, the aortic measurement might change throughout being pregnant on account of elevated blood move. Throughout being pregnant, it’s extra frequent and dangerous if there’s a development within the aortic diameter as a result of it will increase the chance of tearing within the inside layer of the aorta, inflicting dissection or rupture, which might be life threatening.
After supply, the scale of the aorta might stay the identical, lower in measurement, or enlarge, which is why continued follow-up is necessary.
“This story highlights the important significance of getting a specialised staff to handle younger girls with aortic illness, significantly those that are pregnant or planning to grow to be pregnant,” mentioned Afifi, who’s an attending coronary heart and vascular surgeon at Memorial Hermann-TMC. “Every case presents distinctive challenges, requiring an individualized care plan. Some sufferers may have aortic restore earlier than or throughout being pregnant, whereas others might face dangers that necessitate different counseling and decision-making. As a result of these instances are uncommon, accessible information is restricted – making cautious documentation and knowledgeable administration much more important. That is why referral to a specialised middle, such because the one we’ve got right here at UTHealth Houston, is so necessary.”
The household remains to be awaiting his check outcomes to find out if Damian has Marfan syndrome.
“Damian is actually a miracle child,” Jessica mentioned. “He’s hitting all his milestones; he has no bodily or psychological delays. He’s a happy-go-lucky child, and I could not ask for a greater scenario. So far as I am going, I am doing effectively. I am in superb spirits. I’ve a number of assist, not simply via the medical doctors that took care of me, however my household and associates have been unbelievable.”
Jessica and her household have since moved to Utah. She is at present in a wheelchair on account of bone deterioration and hip ache. She is going to journey to Houston and proceed her care with Afifi the place she will probably be intently monitored. If Afifi notes a rise within the measurement of the aneurysm, she’s going to bear aortic restore surgical procedure.
“I’ll at all times journey again to Houston for my care, as a result of I do know I’m in good palms. It is difficult elevating a toddler being wheelchair-bound, however mentally I’m in a very great spot, and I’m taking all the pieces sooner or later at a time,” Jessica mentioned.
