A First Time Mom’s Experience Managing Her HAE While Pregnant: Lisa’s Story

February 1st 2023 | 5 minute read
Lisa Facciolla
Like many young girls growing up with HAE, I often worried about how the condition might impact my ability to have children. I was concerned about what this would mean for me and for my baby.

Like many women, my pregnancy came as a surprise, so I didn’t have much time to prepare in advance with my HAE treating physician. Once my pregnancy was confirmed, I knew I needed to set up a meeting with my HAE physician to talk about how hormonal changes during pregnancy might affect HAE symptoms, and to establish a treatment plan. It was going to be important to find an OBGYN willing to learn about the condition and establish an open line of communication with my HAE treating physician.

I met with my HAE treating physician to discuss how pregnancy might affect the frequency of my attacks. He informed me that HAE attacks in pregnant women vary. The frequency decreases or remains the same in some while others experience an increase. He emphasized that if I noticed changes in attack frequency, I should notify him immediately and he would adjust the medication to accommodate my individual experience.

As I entered my second trimester, I started to notice my attacks were becoming more frequent so I contacted my physician. He adjusted my medication to ensure that I had enough to prevent and treat attacks.
I found that treating immediately when I felt an attack coming on was key to managing my HAE during this time. Although I was having more attacks, I felt I was able to successfully control HAE symptoms during the entire course of the pregnancy. I accepted the fact that I was having more attacks and made the decision that I was going to do whatever it took, even if that meant infusing more frequently, to prevent attacks from becoming severe.
Finding the right OBGYN was another very important step. After choosing an OBGYN, during the first visit I informed her that I had HAE, and connected her with my HAE treating physician. Even though I was her first HAE patient, I knew she was the right OBGYN because as soon as I told her about my HAE, she stepped out of the room, researched the condition, then came back to ask me questions. Following that first visit, we worked to build a successful partnership between the OBGYN, HAE treating physician, and me. We prepared for the birth of my child by taking the necessary steps to document my condition at the hospital where I would deliver, developed a plan in the event I needed a cesarean section, and coordinated access to my medication during the hospital stay.

All of this planning proved necessary when I arrived at the hospital to deliver my son. I was in labor for 36 hours and eventually decided to move forward with a cesarean section delivery. Fortunately, I did not experience HAE-related swelling during labor.
Once I decided to move forward with delivery via cesarean section, the anesthesiologist wanted to ensure my HAE was not going to cause complications during surgery. At this point, the letter from my HAE treating physician became important. It stated that I was well-managed and had medication available to treat an attack, if necessary. The letter also provided a direct phone number to my HAE treating physician who was standing by to answer any questions. Ultimately, the surgery went well. I did not experience any HAE-related swelling and gave birth to a beautiful 10-pound baby boy. Upon returning home, I continued with my treatment plan and scheduled a follow-up meeting with my HAE treating physician to discuss my treatment and dosing.

I could not have asked for a better experience. Despite my HAE attacks increasing in frequency during pregnancy, I was determined to be proactive in my care and treatment to ensure that my HAE was well managed. All the time and effort that went into planning ahead and preparing a plan paid off, and I now have a beautiful and healthy baby boy.

To learn more about HAE and pregnancy, you can request a copy of the Guide for Women and HAE at www.haea.org.
Are you interested in sharing your story? The HAEA Community Blog wants to hear from you! Get started here.