Welcoming Oliver

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. 

 

A Mother’s Love

This week we will hear from Loryn McGill, a heart warrior, and mother. Loryn will share her experience with pregnancy, and discuss the challenges and beauty, of motherhood. 

Pregnancy is hard. Having a congenital heart defect (CHD) during pregnancy is even harder.

I had suspected for a long time that something was wrong with me but every doctors visit told be otherwise.  Always the same conclusion: I was not be feeling well because of stress from graduate school.  My weight had increased significantly in a very short period of time and exercise became harder than it already was.  I was told to eat less, exercise more and reduce my stress.  After numerous normal ECG’s and blood tests I had no choice but to accept the results; I was a perfectly healthy.

After graduate school I spent the summer traveling through Europe.  In the Swiss Alps I began to experience heart palpitations, a new sensation for me.  I wrote off this new feeling as the result of being at altitude, too much caffeine, and naturally nerves about going sky diving the next day.  My symptoms worsened and continued over the next two days leading me to an emergency room in Austria where I was diagnosed as having heart palpitations and told I should see a cardiologist when I returned home for further testing.

Upon returning home I was diagnosed with cor triatriatum (or triatrial heart).  The rarest congenital heart defect where the left atrium (cor triatriatum sinistrum) is subdivided by a thin membrane, resulting in three atrial chambers.  The membrane placement resulted in a seventy percent blockage for blood moving through my heart.  I also had only one working left pulmonary vein and my pulmonary hypertension was at near fatal levels.  I was twenty-three years old and had only days to process the fact that I was in heart failure and would need open heart surgery at the end of the week to hopefully save my life.  The doctors were shocked and kept telling my family that they did not understand how I was still alive given the severity of my condition.

During my recovery I was told that pregnancy would be impossible.  My heart was damaged from operating under significant stress throughout my life. The increase blood flow demands of pregnancy compiled with my ongoing pulmonary hypertension gave me a high mortality rate.  This came as very hard news to my husband (then boyfriend) and myself but there was nothing we could do to change the situation.  We both knew I was fortunate to be alive and we focused on moving forward.

Nine years later at a cardiologist appointment I received the very unexpected news that my pulmonary hypertension was in the high normal range and that if we wanted to get pregnant that we were in a good window and should try.  Not long after this exciting and shocking news I had to undergo a double mastectomy and reconstruction putting off pregnancy for over two years.  The irony of the situation was not lost on us.

My pregnancy was hard, really hard.  My body let me know early on that it was not keen on the idea of hosting a guest. My pulmonary hypertension was slowly creeping up and at 24 weeks was at dangerous levels again.  Discussions of early inductions, maternal death rates and heart function were the norm at my three time a week monitoring appointments.  I never needed to be formally placed on bed rest because my mobility was so restricted due to my heart function and swelling.

At 37 weeks I was induced with the knowledge that I would be allowed to labor as long as my heart tolerated but at the first sign of distress for myself or my baby would lead to an emergency cesarean.  I easily labored and the moment I gave birth was the best I had felt in months. I thought that my heart troubles were over and I would soon be returning to ‘my’ normal.

It has been almost four years since the pregnancy and my heart function has significantly changed.  I now have premature atrial contractions (PAC), premature ventricle contractions (PVC), tachycardia, and arrhythmias.  I am on medication for the first time in my life and my doctors and I are discussing what the next steps will be as my symptoms are progressively worsening.

My daughter and I recently went to the heart walk in Orange County and she kept asking if everyone else there had a silly heart like Mommy with a cool scar.  She comes with me to my doctor appointments, wants to know why she doesn’t have a scar, and also questions why I can’t go faster sometimes.  Despite the physical and mental challenges of living with a heart defect I am grateful for the experience and the opportunity to be a Mom and watch my husband be a Dad. I don’t know what my future holds but I know it includes big blue eyes, blond curly hair and endless hugs from the people I love.

 

 

   Loryn McGill M.S. CCC-SLP is a Speech-Language Pathologist and Professor who specializes in the treatment of stuttering.  She lives in Irvine, California with her husband and three year old daughter.  She loves to explore new cities and in her spare time enjoys cooking, snowboarding and sailing. 

The Grenier Family

As young women with CHD, female patients are often cautioned against the idea of pregnancy, as they start to explore the idea of building a family. This October, we will hear from strong, CHD warrior women, as they share their miracle birth stories. Today, Anik Grenier shares the journey she and her husband took to create their family.

Living with CHD, Transposition of the Great Arteries (TGA) in my case, has brought on a unique set of challenges.  I had a fairly normal childhood in the Ottawa region with minimal cardiac issues until my junior year of high school, where I developed neurally mediated hypotension (NMH) as well as tachycardia and bradycardia.

In 1988 when I was about 4 months old, I underwent a corrective surgery known as the Mustard procedure in Toronto.  It had been the most common treatment for TGA since the mid 60s, but as I approached adulthood, there was not much information available regarding the possibility and effects of pregnancy for someone with my condition.  At my last pediatric cardiac consultation, I was therefore advised against having children naturally.  As a 16 year-old who had always wanted to be a mother, the news was a hard pill to swallow, especially after the rough time I had had in recent years with NMH.

When I met David the following year, it became clear fairly quickly that we were in this for the long haul.  From the beginning of our relationship, I was open with him regarding my CHD and its possible repercussions.  He was always very supportive and told me that there are different ways of becoming parents, if we chose to down the line.  Shortly after, we moved into our first apartment in Montreal and started university.  Because NMH and arrhythmias were still causing me issues, I came to the conclusion that my chosen career path in forensic anthropology would not be realistic so I quit school with a heavy heart and went working as an administrative assistant while I figured out what I wanted to do. 

Eventually, my NMH symptoms virtually disappeared and I underwent a successful ablation to treat both arrhythmia’s. I felt as though I had found a new lease on life, and decided to go back to university, majoring in teaching French as a second language.  At this point, I was healthy and David and I we were starting to talk about an engagement and starting a family. At my following cardiac consultation with my ACHD cardiologist, I asked my doctor about the possibility of pregnancy.  To our great relief, we were told that I would need to do a complete assessment of my heart function (including an MRI, a stress test, an echo-cardiogram and blood work) but that if nothing worrisome came up, it would be possible while being closely monitored.  Nothing of note came out of the evaluation so we met with a maternal fetal medicine (MFM) specialist who explained to us the risks involved for myself during pregnancy as well as the risk of passing on a CHD to our children.  In our case, since the risk was only a few percents higher than that of the “general population”, David and I we were comfortable with me carrying our children.

The first time I became pregnant, we went through the normal scope of emotions for future parents: we were elated, scared, nervous and wondered how my heart would cope.  A few weeks later, shortly after our wedding day, I had a miscarriage 8 weeks into the pregnancy.  We were devastated.  At the time, I was really angry at my body, at myself for having a CHD and it took me a long time to come to terms with this.  Over the next year, I had two more miscarriages, both around 8 weeks as well.

The fourth time I became pregnant, we expected the worst again.  But then, it was the end of the first trimester, further than all previous pregnancies, and this little one was still hanging on.  We had our first prenatal OBGYN appointment and all seemed fine, there was a heartbeat.  We became cautiously optimistic.  I was followed at a high risk OBGYN clinic so I had multiple ultrasounds as well as echo-cardiograms every trimester for myself and one for the baby, but overall, it was a “normal” pregnancy.  I delivered a heart healthy baby girl in the cardiac care unit as a precaution after a relatively quick natural labor, but my heart handled it very well.  In my post-partum cardiac evaluation, it was shown that my heart function had actually improved and was therefore given the go ahead to have more children.  Having read many birth stories of women with CHD, I was pleasantly surprised that this was the outcome, as I knew that it is not always the case.

My fifth pregnancy was very similar, although I was more confident about its success this time.  I was again followed at the high risk OBGYN clinic with the same doctor but I only had one echo-cardiogram as my heart was coping well.  I had another natural delivery in the CCU as a precaution without ill affect on my heart health.  David and I feel very fortunate to have been able to go through these experiences, as hard of a journey it was, especially because many couples in our position do not have the opportunity.  We are very grateful for our little family and that our daughters, now two years old and 6 months old, are healthy, happy and discovering the world.

Anik Grenier grew up an only child in a bilingual household in the NCR of Canada.  Having a passion for all things artistic, historical and cultural, she attended university in Montréal, majoring in teaching French as a Second Language.  She now lives in Montréal with her husband David and her two daughters, Zora and Tali where she teaches FLS at the elementary level.