This week we are continuing to explore the challenges of pregnancy for women with CHD. Today we will hear from Deanna, a heart warrior, who discusses the complications of pregnancy. However in the end, it was all worth it.
Like so many women with Congenital Heart Disease (CHD), I have been told many things about pregnancy and risk throughout my life. I was fortunate to have never been told pregnancy was out of the question for me. I had just finished graduate school and was working as a Speech-Language Pathologist, when my husband and I learned I was pregnant. I was living in Albany, New York during my pregnancy and my cardiology provider was located back home in Maryland. I was fortunate to have grown up in the Washington, D.C. metropolitan area and had access to an exceptional pediatric cardiology group who had followed me since I moved to Maryland at eight years old. My main provider is an adult specialist within the pediatric group.
I called the nurse practitioner (NP) line at my CHD provider’s office to inform them I was pregnant. I was initially met with shock by the NP. This caused me to panic slightly. Once she got over her shock, she was able to discuss a game plan with me. I was to immediately locate a high-risk OB. The words “high-risk” resonated deeply with me. It had been 19 years since my last open-heart surgery. For 19 years I lead a life relatively unaffected by my CHD and although pregnancy had been discussed vaguely with providers in the past, no one explained the “risks” involved in detail. I only saw my cardiologist once a year, and every other year I participated in a stress test. I was fortunate that my cardiologist had trained at the facility where I would deliver my son and was familiar with many providers in the Albany area who would be involved in my pregnancy and delivery.
I connected with the OB practice associated with the hospital and the journey of bringing my baby into the world had begun. I was tracked by my OB every week, and then gradually two to three times a week towards the end. I visited with the cardiologist on my new team once during each trimester. I was elated to encounter no difficulties in relation to my heart during my pregnancy. The head of the cardiology department at the hospital performed my son’s fetal scans. I was always told that my child would have a 25% chance of having CHD (same percentage for my siblings, who are heart-typical). I cried happy tears when the echocardiogram and EKG all yielded normal results. Normal- my baby was going to be normal. I felt so much relief for the physical hardships he would never have to endure. His heart would not endanger his life. He would not have a scar to be self-conscious of, that people would question or stare at. He would not have physical restrictions in athletics. He would thrive, he would have endurance, he would be normal.
I cried for myself a little at that appointment too, remembering the stories of the sick baby I was. I was 13 pounds at 13 months old. I slept 20 hours a day. My mitral valve leak went undetected for the first year of my life. However, an ultrasound tech had detected something was wrong with my heart, but my mother’s practitioner disagreed, and the issue was dropped. Alas, I felt grateful to be in the hands of someone who was beyond competent in interpreting the results of the scan. I trusted this provider and took peace in normalcy.
Due to my high-risk status, I was on a strict diet and was only allowed to gain 20 pounds during my pregnancy. At the start of my pregnancy, I was already considered obese by medical standards. I was 170 pounds and 5’0” tall. September came, and my son’s birth was nearing, and I had thankfully only gained 18 pounds in total. The medical team had decided that I was to be induced and a date was scheduled. In many ways, I was both thankful and resentful for this type of medical control. I wanted to experience going into labor naturally and felt robbed of this opportunity.
To decrease chances of elevated heart rate and stress on my heart, I elected to receive an epidural. The head of the anesthesiology department was following my labor and delivery, as was the head of cardiology, and the head of OB for the hospital. I felt safe and well cared for. A week before my induction, I met with the director of the Anesthesiology department to discuss the upcoming procedure. He would be the one placing the epidural and this set my mind at ease. On the date of induction, I was instructed per standard protocol to arrive at the hospital having stopped all food and drink at 12 pm that day. I did binge on Indian Buffet for lunch that day, oh yes. My induction process started on a Monday evening. It was the first time since I was six and a half years old that I was an admitted hospital patient.
A flood of memories and emotions rushed back to me. Suddenly, I felt scared of people coming in and out of my room. Like many women with medical conditions, the birth plan that books encourage you to make was out the window. I was going through the motions. At the same time, I was overwhelmed with the details and the waiting. The hunger was intense, as well. I was being monitored very closely as the team was preparing for the worst-case scenario: an emergency C-section. Thus, I was left over 9 months pregnant hungry and thirsty. I remember begging for food. The first night I was in the hospital, I was placed on IV fluids and the practitioner prescribed Cervidil to start the process of labor.
I barely got any sleep because of all the routine checks and the monitors. I was strapped to a heart monitor and a blood pressure cuff that remained on my arm for days and would take my blood pressure throughout the hours. As I was hooked up to the monitors, somehow functioning on even less sleep and no food, I felt a pang of jealousy. I was jealous of the women healthy enough to have home births or even the women who were able to show up to the hospital in labor and deliver the same day.
On Tuesday, the head of the OB department came to check on me. He wanted to allow a few more hours for the Cervidil to dissolve. I told my husband I felt that the pill was accomplishing nothing. I begged the doctor for some food. I was given some broth that had the most minuscule amount of meat fat but I felt so much satisfaction consuming that. The day rolled on and still nothing was happening. There was no change and the medical team decided to let me wait a little longer. This meant more ice chips and Italian Ice, but nothing solid.
On Wednesday, the head of the Anesthesiology department came to tell me that my Epidural was scheduled midday. I was administered the Pitocin drip to help move the process along. All the doctors who checked in on me were cautiously optimistic that I would deliver naturally. There was fear still surrounding the possibility of an emergency C-Section. This was something I absolutely did not want and expressed this several times. The Pitocin had its way with me and caused me to become severely nauseated. I dry heaved the smallest amount of substance in my stomach. I had only thrown up less than five times in my first trimester, and other than that this was a nonissue during my pregnancy. Throwing up on an empty stomach was miserable.
The pain became excruciating. Contractions are the kind of pain that leaves a memory in one’s body. Intuitively, I knew this. I also knew this wasn’t my first time experiencing intense pain. I remember waking up after my Mitral Valve re-repair surgery, at age six and a half, and saying, “I feel like I got hit by a train.” As an adult, I must laugh about this description. It is cartoon-ish, but the best and most accurate descriptor my language could provide at that time. This pain brought no words to mind, in fact the words were gone. There were guttural sounds emanating from my mouth. A voice that I didn’t recognize. I remember the terrified face my husband made as I cried out.
The nurses rushed in to tell me to relax because I was setting off the heart monitors. The noise they were making didn’t register with me. My breathing was becoming erratic, that was something that I did notice. I was encouraged to get up to use the bathroom before my epidural placement. I needed assistance with all the wires to get to the bathroom and was able to get some relief. There wasn’t much to get rid of since I hadn’t been eating solid foods, however. After returning to my bed, the nurses placed an oxygen mask on me to help stabilize my breathing.
The OB came to check on me and was concerned that my water had not broken. He was saying that he would have to break it soon if it did not break on its own. I was afraid of any extra procedure. I was starting to feel a heightened sense of danger. It was difficult to express these fears to anyone, because logically I knew I was receiving the best of care. I felt like I had lost control over my body.
Shortly after the OB’s visit, the Anesthesiologist arrived to administer the epidural. Coolness. I have historically been a model patient having been raised in the medical system. Needles never gave me any grief. The epidural was no different. It took away the pain very quickly. The relief I felt was like noise cancellation headphones in a loud space. I could breathe again. My heart rate stabilized. I laid back in the bed and could still feel the pangs from the contractions, but the pain was missing. For some moments there was bliss.
Then there was a rush of wet, at about three o’clock in the afternoon. I was horrified that I had urinated on myself. I started screaming again and a nurse came in. She said, “Congratulations, your water broke!” The contractions were still quite far apart, and I was not dilated enough to start pushing. I was left to wait, with providers checking on me periodically to assess the situation.
Many hours passed and before I knew it, I had finished watching my third sunset from my hospital bed on Wednesday, September 24th. I could no longer move my legs. The nurse came in to turn the Pitocin off around 7:30 pm. I thanked her tearfully. The onslaught of that drug can still be easily recalled by my body. The doctor came back in to tell me it was almost time to start pushing. I sent off my last few text messages to family and turned my phone off. It was around that time that the clock in the room stopped working. Little did I know then, how much that clock would matter to me. I believe I started pushing around 9:00 pm.
My husband grabbed one leg and the nurse grabbed another and I proceeded to push. I had to keep my eyes closed for much of the time because I felt like they were going to pop out of my skull. Occasionally, I opened my eyes to see other assistants removing bloody draw sheets and replacing them with clean ones. I began to feel light headed and knew I was losing a lot of blood. I started to panic and felt like I was dying. The nurse placed an oxygen mask back on me and I could feel myself hyperventilating. I looked at the clock for some reassurance only to remember it had stopped working. I had no idea what time it was.
The doctor monitoring my baby said his heart beat was slowing down and he needed to come out. It was explained to me that we might have to go the emergency C-section route. This created so much fear and I began to cry weakly. I had such a dry mouth. I was burning up and becoming feverish. My hair was drenched in sweat. The nurses kept replacing a cold towel on my forehead, which quickly heated up against my skin. I said I wanted to keep pushing and they conceded.
One final push and I heard my baby screaming. The doctors called out time of birth as 1:12 in the morning of September 25th. I was stunned how much time had passed since the start of labor. Still wearing the oxygen mask, I cried tears of relief. I did it! I listened as the doctors were calling out his Apgar scores, all excellent. I was feeling extremely weak and lightheaded. I wanted so badly to sleep. At the same time, I felt strong and proud. I accomplished what I had set out to do. My body endured this trial and thrived and was strong. My heart withstood the endeavor of childbirth and as a result I brought a new person into this world. When I held him for the first time, I was content. Comically, he pulled off my electrodes on my chest. Although, I became temporarily anemic from the blood loss, my heart remained stable with no change.
The week I completed this story, my son turned four. I can still hardly believe it. He is funny, strong-willed, and active. When I visit with my cardiologist each year, he reminds me that if I want another child, it is better to do so sooner rather than later given that valve replacement is pending in my future. For now, I am stable and thankful for no change each visit.
My name is Deanna Ashkeboussi and I am a proud CHD survivor with a history of AV canal defect and re-repair of AV valve. I had both my surgeries in Boston Children’s Hospital in the 90s. I moved from Massachusetts to Maryland when I was eight years old. I am a Speech-Language Pathologist, a wife, and a mother to a one human (Oliver) and two cats (Tibideaux and Jupiter). I am the youngest of three siblings and enjoy spending time with my family. I am grateful for all the medical providers who have helped me and inspired me throughout my life. Most of all, I am thankful for my parents who never stopped fighting to keep me alive.