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.

 

The Joy Siblings

This week we are continuing to explore how CHD affects our siblings. Johnathan shares how his sister Abbigail, has affected his perspective on life, and the lessons he has learned from her. 

 

My sister Abbigail was born with heart defects in 2008 and passed away at two months old.  At first it didn’t affect me much because I was only five years old at the time and don’t remember many details.  However my mom took a lot of pictures so that helps bring back some memories, which I’m thankful for.  The main thing I remember is how our community had come together to help our family. I do know some family and friends of the family had put together a fundraiser at my school that many came too, to show their support while Abbigail was in the hospital.  My mom also had saved cards that my teacher and classmates had made along with a heart that had everyone’s hand print on it.  Which didn’t mean much to me at the time but now looking back on it, it shows me how important it is to take time to let others know you care and let them know they aren’t alone.  It has almost been ten years and as much as I wish I can say I remember my sister, I can’t. However I have learned many things from her.  Through conversations and stories I am learning more of the depth of Abby’s condition and the impact she had made on others.  I realized if she made an impact in just two short months, I realized how any small act can play a significant part in someone else’s life.  Abbigail has changed the way I see people. For example, If I see a disabled person struggling, I want to help them. If they look lonely, I try to talk to them and make them smile.  I just all around feel the need to be nice and help others anyway I can. If Abby was still here she most likely would have had a lot of help along the way, so I try to be that person for other people.  Every life is precious, no matter what size, shape, or form.  As each person in my family has different  feelings on my sister no longer being with us, we try keeping her memory alive by treating every day to be the best it can be and try to be as nice as we can to others, to make there day a little better.  I do know some days are definitely sad, like the day she died and her birthday, but it also helps us appreciate the time that we had with her and how happy our lives were with her around, even though things weren’t perfect. So every year on her birthday we keep our family tradition and try to focus on the positive impact she has left on us and many others.

 

Hello, my name is Johnathan Joy.  I grew up In Homewood and now live in New Lenox.  I am a freshman at Lincoln Way Central and have three brothers. I love animals and in my free time, I like to hang out with my friends and play sports. I enjoy football, baseball and basketball.

Lauren and Korrin

This 3rd week of September, we share another special sibling story. Today we hear from Korrin Wells, a sibling who just happens to be that of our Blog Coordinator! Korrin discusses how CHD has affected her, and the lessons it has to offer. 

As a child growing up with an older sister with CHD, one of my earliest memories was being held by her, but before she went in for one of her open heart surgeries. Lauren has always ferociously protected me, and the day she went in for open heart surgery, I was 4, and that day I was prepared to be her protector; give her my heart so she could wake up. That day is still clear in my mind, I was so confused and anxious. Seeing her dead asleep, for all I knew she could never wake up, but in my own heart, I was completely sure that she would. It’s just not her style to give up and not fight. Her heart has made her into a fighter, and a lover, with a large appetite for life.  That’s probably the best lesson she has taught me, how to fight, love, and live.

It’s hard to describe how her heart has affected my life. Knowing she has this “heart disease” has been ingrained in my life since day one, it was our family’s reality even before I was born. Sometimes I think it worried the people around her more than it did herself. She always seemed more fascinated by it, rather than restrained by it. As though it was just another challenge to conquer. I watched how CHD has shaped my big sister throughout life, and I have learned a lot from the journey, and couldn’t imagine her any other way now. There’s a distinct quality CHD gave Lauren regarding her personality, that I simply couldn’t see her having if she wasn’t born this way. That same quality has shaped my life and inspired me daily. Although it is her greatest weakness, it’s also one of her greatest strengths, as she lives harder than anyone I know. In hindsight, I couldn’t imagine my life without the battle of CHD either. Although I wouldn’t wish CHD on my worst enemy, it has taught me, and my family so much more than we can even realize, and it has strengthened us in so many ways. I believe her battle with CHD gave her the determination to live, I mean really live, and was her catalyst for strength and independence. She always strived to do things herself, pay for her own bills and buy her own car, travel as much as possible, and push physical limits. Anything her doctors said she could not do, she did. She never let her CHD define her, and denied the notion that she couldn’t run, weight lift, or travel to high altitudes.

In the moments when I was so beaten down, and discouraged by life, I looked to big sister as my example that I can do whatever I want to in life. She has always been our biggest advocate in life, turning her attention on me and my other siblings, rather than herself, and became my role model for athletics, change, and ability. Even when she had moments of doubt, and struggled to believe in herself, I saw her grind through the hard work of her journey with CHD and push past merely surviving, to eventually be the powerful young woman she is today. What makes the ongoing battle with CHD so hard is imagining life when she’s not there. However, I see the beauty in this unfortunate beginning to Lauren’s life, because I see that her heart is part of her making, and she is part of mine.

 Korrin Wells (left) is now a high school senior, and captain of her cross country team. She will attend Colorado State University, and is very excited to study marine biology! Korrin is a very talented barista at a local coffee shop, and is saving up money, as she is already anticipating her Masters degree. Lauren Wells (right) is a recent graduate of Colorado State University, who now works in finance as a junior investment analyst. 

The Weiner Siblings

This week, we continue to hear from our siblings and how growing up with a CHD warrior has affected their lives. Today,  we share an interview given by Jeff and Jessica Weiner, siblings of Jennifer Weiner, our former blog coordinator and current Lead ACHD Volunteer.  Their thoughts come to you through a podcast hosted by Heart to Heart with Anna.  So whether you are driving to work, taking a walk, or doing some household chores, you can follow the link below and listen to Jeff and Jessica tell their story. 

 

Left to right: Jessica, Jeff, and Jennifer

                                     

 

Jeff is the oldest of three siblings, born in 1977, and the only son to Chris and Jeff Sr. Jeff was just over 4 years old, when Jennifer was born with a congenital heart defect. Growing up, he was responsible for walking Jennifer to the school they both attended and babysitting both sisters. He enjoyed playing most sports, especially hockey, which he still plays.

Jessica Weiner, at 33, is the heart-healthy, youngest of three siblings.  Jessica’s sister, Jennifer, was born with Truncus Arteriosus in 1982. Jessica was not yet born when her sister had her first surgery. However, the two siblings, who shared a room growing up, are quite close; Jessica often takes on the role of secondary caregiver to her older sister.

 

Amy and Gretta

On this holiday weekend, we are beginning our series on Siblings. We will be dedicating the September theme to their stories, their journey with CHD . Our siblings voices are not often heard through the the chaos that can come with appointments and procedures, but CHD takes its toll on them as well.  This week, we hear from Amy, who wrote this piece about her baby sister, Gretta, nearly a decade ago. However, her words still hold true today.

 

Amy and Baby Gretta

I always wanted a baby sister. I never knew how much it would change my life when she got here though. My little sister was born with a heart defect. Half a heart actually. We both love each other with a whole heart in spite of it.

My step mom got pregnant at the end of my junior year in high school, and had nothing but trouble with her pregnancy. She spent a lot of time in the hospital which didn’t make it easy on me and my dad as I was in school and helped Daddy on the farm. It was right before I started my senior year that we all got the news that changed us forever. Valerie was pregnant with twins! That was the end of the good news…

We found out in the same appointment the Gretta had a heart defect and Daisee had another birth defect that she wouldn’t live with. It is hard to describe the feelings a person has when something that they have wanted for so long it taken away from them. I know that Valerie and my dad had it hard too but I was losing a sister before I even got to meet her. The one thing I knew for sure was that the other one would be loved and cared for more than any other baby sister could be.

As I started school it seemed like every day I came home Valerie had been to another appointment. No matter how much Daddy and Valerie tried to focus on me and my life I knew they were thinking about what else was coming. They missed a lot of my football games because Valerie was in the hospital but it was okay if it meant my sister would be okay.

When Gretta was born I took the day off of school and was so excited to meet her. Little did I know that seeing her in the NICU for a few minutes would be all I got to see her before they took her away to the children’s hospital down the road. I didn’t get to see her for 5 days. Gretta had surgery when she was 9 days old. I never thought I could love a sister so much and I didn’t want to let her go.

Gretta had her surgery and did really well with it. She got to come home on Christmas eve and I couldn’t think of a better present. I knew not to expect any presents since Daddy and Valerie had been at the hospital so much with Gretta. They surprised me with a new camera though. I was so glad and made sure the first picture I took was of Gretta.

Gretta (middle) and her nieces (Amy’s three daughters).

Over the next few months things were different in our house. We were more aware of the germs we came into contact with and all of the doctor appointments meant that my family was gone a lot. I made sure to keep my grades up and to take care of that little sister as much as I could. It was time to get ready for prom and graduation. It was also time to get ready for Gretta’s next surgery. My parents made sure to take time for me to make sure I got a prom dress and all of the announcements were taken care of along with cap and gown. It’s hard to be excited about school and graduation when the most important little person in your life is going to have open heart surgery. I couldn’t stay away though. I went to the hospital to see her in my prom dress after we ate dinner out. I wanted to be with her but I wanted to be with my boyfriend and friends too.

It seemed like anytime there was something big in my life Gretta as in the hospital. I was 2 days over my due date when Gretta had her 4th open heart surgery and a month away from my due date when she had her 5th open heart surgery.

Sometimes I look back and think about what I may have missed. I know nothing was more important than my little sister though. She is now 8 years old and doing really well. She loves her nieces as much as I love her and even though it isn’t easy being her sister sometimes, she is definitely worth it.

Recent photo of Amy and Gretta

Amy is a stay at home mom with three girls and big sister to Gretta age 10. Gretta was born with Tricuspid Atresia, Transposition of the Great Arteries and a Hypoplastic Right Ventricle. Gretta has had 5 open heart surgeries along with countless other procedures. Gretta is 7 years post Fontan and is doing very well. Gretta loves to dance, go camping with her Girl Scout Troop and hanging out with her sister and nieces. Amy is very active in her church and her girls’ Girl Scout troop.

Inside Out

Our last August post is a throwback! Today’s guest blog comes from Stephanie, who shares how her priorities have changed, since her daughter, Maggie, was born with a heart defect.
This was originally posted in May of 2014. 

 

SweetAngelMaggie (1)

I used to really care about elections and politics.  As a political fundraiser, I took it personally if friends or even strangers supported my opponent.  Funny thing is, they were never MY opponent, they were the person running against the person who paid me to help them raise enough money to compete and hopefully win an election.  I jumped from campaign to campaign, always eager to fight and argue and sometimes sacrifice relationships with friends and family members.  Nothing was more important than my job, my reputation and the campaign I happened to be working on.

I worked for a sitting governor during my entire pregnancy in 2011.  I sat in an attic office, talking and complaining and making sure that everything I touched went well.  I raised a lot of money and watched my feet and ankles swell as I paced around at fundraising events.  I took pictures of my “kankles” afterward.

Our daughter was born on January 11, 2012; she was pink and screaming with a shock of dark hair.  I did not enjoy pregnancy one bit, so I was so relieved she was here and I could eat a big dinner.

During the first exam, after the first bath, probably while I was begging for a dinner menu, the nurse said, “She has a heart murmur….But lots of babies do and usually it’s nothing, most close on their own.  No big deal.  The pediatrician will listen and I am sure it will all be fine.”  I shrugged and said OK, never once thinking there was anything wrong.  Her heartbeat had been so strong the whole time I was pregnant and I had such a tough nine months – I was sure nothing was wrong.

The next day, the pediatrician examined Maggie and commented that her murmur was a “3 on a 1 to 6 scale.”  He ordered an echo, just to figure out what was going on.  I will never forget my mom piping up from across the room, “Her sister had Tetralogy of Fallot!”

Tetralogy of Fallot sounds like gibberish if you’ve never heard it.

I never knew my sister’s defect had a name.

I thought she just had a hole in her heart that they fixed.

The doctor paused upon hearing my mom’s comment and I don’t really remember much other than taking a shower and talking to my sister about child birth while the techs did an echo on my baby, down the hall.  My husband and mom walked with her, I wasn’t overly interested because I just knew nothing was wrong.  I walked over and looked in the window while they did it but I just couldn’t bring myself to get upset.

Later that afternoon, around 5:15 or so, my husband and I were in our room with our new baby.  For some reason she and I were skin to skin, maybe we had just finished nursing, when the pediatrician came in the room.

I only remember him walking in and around to the bed where we were sitting.

I do not remember what he said but as he said it, I felt my soul turn inside out.  There is no other way to describe it.

I have never been the same.

The love I feel for my child is beyond comprehension.  I have been more scared than any parent should ever have to be.  I felt something deep inside me rip open.

I have never been the same.

Now, 28 months later, Maggie has had 2 heart surgeries and is functioning normally.  You would never, ever know she had heart issues.  She goes to Montessori school, jumps and runs everywhere and loves her Daddy.  She loves me too, but it’s a different kind of love.

I am back working in politics but I don’t care the way I used to.  I care about Maggie and my husband and our family, but that’s about it.  I care about helping other heart baby families know they are not alone and I have such deep empathy for parents of children with any kind of issue.

Politics is fun but I am just so blessed and thankful that my baby is OK.  I am not the same as before Maggie’s diagnosis and I think that’s a good thing.

 

Stephanie Dorko Austin began her career working for former White House Chief of Staff Erskine Bowles both times he ran for U.S. Senate (2002 and 2004).  She was Finance Director for State Treasurer Richard Moore’s gubernatorial campaign in 2008, helping to raise just over $5M for the primary election.   During the 2010 cycle, she worked for U.S. Senate candidate Cal Cunningham and N.C. Senate Majority Leader Martin Nesbitt.  She was Deputy Finance Director for Governor Bev Perdue’s re-election campaign in 2011.  She has also worked as a fundraiser for State Treasurer Janet Cowell and U.S. Senator Chris Dodd of Connecticut.

Stephanie’s non-profit experience includes serving as Vice President of Government Affairs for the Charlotte Chamber of Commerce and Development Director at the Council for Entrepreneurial Development and the NC Advocates for Justice.  

She currently works for the Cooper for North Carolina Committee and serves on the Board of Advisors of the Jamie Kirk Hahn Foundation and the Board of Trustees of Follow the Child Montessori School.  A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh, NC.

Conquering CHD… And Medical Bills with Akina!

This week we will continue to look at how we can better gear up for the financial stress that will come our way in paying for CHD. We will analyze the topic through the eyes of Akina Takahashi, a Heart Center Social Worker. She offers us great advice on how to work with various professionals and organizations to better prepare for the medical bills.

 

Caring for a child with congenital heart disease or learning to manage your own healthcare as an adult with CHD can be stressful and scary.  In addition to mastering medical lingo

, learning to navigate the health system, and adjusting to long term physical and emotional care needs, all other life demands remain present and a source of stress.   In my interactions with families, finances are one of the most common stressors discussed, often because financial strain is exacerbated with a diagnosis of CHD.  Balancing all of this doesn’t have to be done alone.  In reaching out to your support network (PCHA!), social workers, friends and family there are a wealth of resources available that might lighten your load allowing you to concentrate on everything else on your plate.

Here are some resources that I like to highlight in my discussions with patients and families.

INSURANCE:

Medicaid: is a healthcare program that assists low income patients/families with insurance coverage and results in minimal to no out of pocket expense.  Often your state’s Medicaid program will have tiered options for families dependent on income where you might be responsible for some out of pocket costs associated with accessing care, though this remains typically more affordable than other coverage options.

Of note, many states offer expanded coverage into adulthood. If you recently turned 18 years old and are looking into options or an adult with CHD who is financially burdened by the cost of your healthcare, I’d encourage you to look into if your state provides expanded coverage and if you fall within the income eligibility limits.  Be advised that the income eligibility for children is different and wider than if you are applying as an adult.

An example of coverage options via Medicaid for families in Illinois:

  • A family of 3 can have a household income of up to $2,501/month and qualify for traditional Medicaid which does not require co-payments or monthly premiums.
  • Looking at the tiered levels, a family of 3 can have a household income of up to $5,411/month and still qualify for coverage, though this coverage requires a monthly premium of $40/month per child and a maximum co-pay of $500 annually per child.

If you are interested in applying for Medicaid, visit your local DHS office for more support.

Affordable Care Act: This coverage is different from Medicaid in that it is not income dependent and often a good choice for those who are self-employed or unable to access employer sponsored coverage. Purchasing coverage through the marketplace requires monthly premiums and will have out of pocket costs associated (co-pays, deductibles).

If you are interested in purchasing a marketplace plan, visit www.healthcare.gov

DISABILITY BENEFITS:

SSI: You or your child’s CHD could qualify for disability payments called supplemental security income (SSI) managed through the Social Security Administration.  See recent PCHA blog post here for more information.

SUPPORT TO ADDRESS YOUR MEDICAL BILLS:

If you are stressed with medical bills, I’d encourage you to reach out to your medical social worker who might be aware of local agencies that provide financial assistance for medically related expenses.

A national organization that I typically highlight with families is the United Healthcare Children’s Foundation that provides financial assistance related to medical costs for families with commercial insurance.

Additionally, consider visiting your medical facility’s financial office to find out if there are patient assistance programs or payment options.  Many times, healthcare facilities can discount the cost of care if paying the bill in a certain time frame or provide financial assistance for patients/families based on income.

MEDICATION:

If you find yourself without insurance coverage, GoodRx.com provides coupons for common medications to reduce the out of pocket expense.  Also, Walmart has a great $4 prescription list that offers a month’s supply of medications as low as $4. Many times the pharmaceutical company has patient assistance programs discounting the cost of the medication based on a family or patient’s income.

CARE COORDINATION:

Linking with care coordination is a great way to access more support for you or your child’s heart condition.  A care coordinator’s role is to serve as a medical home and navigate families through the healthcare system.  An added benefit of connecting with a care coordinator is that they help ensure the appropriate utilization of medical specialists.  For example: your care coordinator should be able to interface with your child’s medical equipment company if you’ve been unsuccessful to confirm continued access to medical supplies and prevent the risk for hospital admission or an outpatient visit due to lack of supplies.

If you are interested in care coordination services, inquire with your insurance provider, PCP office, or medical social worker for appropriate linkage.

COPING AND SUPPORT:

Learning to accept help from friends and family can be challenging. By opening yourself up to support from loved ones in the form of ready-made meals or a lift to the doctor’s office is not only a lovely way to reduce your everyday demands, but can also unintentionally help free up funds to direct towards medical expenses.  If finances or any other stressor is overwhelming you to the point where you are having difficulty coping (trouble sleeping, changes in eating, persistent worry, social isolation) and interested in counseling options, please note that many therapists provide sliding scale payment options to allow you to get the support you need.  Consider reaching out to your insurance plan, social worker or PCP for further assistance with linkage.

As you or your child journeys through the CHD world, please know that there is always support available from your medical team and the community.

 

Akina earned her master’s degree in social work from the University of Hawaii at Manoa and attended the University of San Diego for her bachelor’s degree in psychology.  Akina is the Heart Center Social Worker at Ann & Robert H. Lurie Children’s Hospital of Chicago, where she is designated to provide support to cardiac patients and families in the Heart Center’s outpatient clinics.

Congenital Heart Disease in an Era of High Deductible Health Plans

Hello readers! This week, we have a fantastic post written by Mr. Kinney of the Herma Heart Institute, on how patients and families can gain a little piece of mind and take control when the medical bills are rolling in. The journey of CHD can be overwhelming in many different ways, and medical bills is a huge component of that. This post provides a step-by-step process that can alleviate some of the stress that families may have when it comes to those daunting bills. 

One Step at a Time:

Despite being the most common birth defect nationally, congenital heart disease can be scary… and isolating. Whether you as the reader are the patient, or your child is the patient, the physical and emotional rollercoaster can be relentless: the shocking realization that something is wrong, a painful journey to determine what options are and who is going to be your partner in this journey, the fear and unknown heading into any type of intervention, and an arduous recovery in even the best of circumstances. Just as things begin to settle down, some new mail starts to arrive. Medical bills.

This could be a hospital bill, a physician practice bill, a combination, or even a third party vendor bill for some diagnostics, lab work, or medical equipment. Perhaps it could even be an explanation of benefits from your medical insurer (which briefly shows what was billed for, what the healthcare provider is allowed to bill you, what the insurance company is covering and what is your responsibility as a patient/parent), well before you have any idea on the billing. After pouring all possible energy into taking care of yourself or your child, the aftermath can be overwhelming and seem impossible to navigate. Taking things one step at a time can help.

Take Good Notes:

Often times, this type of journey is completely unexpected and one is well on their way through the healthcare journey before they even think of the billing issues. I was recently at a family advisory committee meeting, and heard a mother giving this advice to another mom while we waited for the meeting to start. She detailed her struggles having been down this road before, and is now quick to verify names, confirmation numbers, authorization numbers, dates, and even company she is actually talking to regardless of what number she dialed (for the all too common third party). This doesn’t necessarily solve things from a financial perspective, however it does make it less painful to navigate.

Start With a Phone Call – Insurer:

As early in the process as possible, call your insurer to explain the situation. If this is before you’ve had any sort of diagnostics or intervention, great, but if not, this is still a useful step. Here you can speak to someone who can refresh you on the specific limitations of your plan; perhaps like most, you didn’t pay attention to any details regarding medical conditions you didn’t have, and now with this recent diagnosis you or your child needs additional services. Placing a call to your insurer will provide you with a refresher on deductibles for individuals and families, networks (ie: hearing from the facility that they are in network, only to find out they are considered tier 3), and any other limitations related to the specific diagnosis, (ie: only one outpatient echocardiogram covered per six or twelve month periods).

Explanation of Benefits and Bills:

After treatment, you will receive an explanation of benefit from your insurer and the bills from the hospital and/or providers and/or any third party vendors. Use these items to help you advocate for yourself. . A quick check to make sure the explanation of benefits matches the bill is always helpful to understanding if things are misaligned. Save these statements as they come in, even if there are multiple. As necessary, it may be useful to request a detailed bill from the hospital, which may give you more details on CPT/billing codes used or details on procedures performed which may have limitations in your plan. When speaking with your insurer, using the specific codes is helpful again to understand limitations, denials, or authorizations.

Don’t Worry About your Doctor or the Hospital:

It is not uncommon to form a lasting bond with the care team that saves yours or your child’s life. This doesn’t mean that you can’t push back or question bills, point out something that seems inaccurate, or request clarification. Often times, your care team is actually ready and willing to assist and may be able to link you up with information from their side (i.e.: authorization numbers, details, etc.) and very likely pushing both the health system as well as the insurer to keep things accurate and fighting to deliver the right care at the right time. While working on a particularly complicated bill with a parent a few years ago, we discovered an error where the billed amount didn’t match the explanation of benefits due to insurance shifting with the parent’s new job. After working it all out, and getting patient accounts agreement to send a revised bill which matched the explanation of benefits, the parent asked to talk to me privately. The parent was very concerned that their doctor was going to hear about our discussion and feel like the care team did something wrong or that the patient didn’t value their efforts to care for the family. This concern is incredibly common, however, most of the time, the care team will have no idea that there is an issue with billing, and even if they do, it is much more common that they are an advocate for the patient and family having timely and accurate billing.

Deductibles, Max Out of Pocket, HSAs, Flex Spending Accounts, and Government Aid:

Whether healthy or diagnosed with a chronic condition, it is additionally helpful to understand your health plan deductibles, max out of pocket expenses, and what access you have to health savings accounts (HSA’s) or flex spending accounts. A deductible is an amount the patient must pay before the insurer begins to pay, and is often coupled with a maximum out of pocket before 100% of expenses are paid. A simplified scenario might be a $5,000 diagnostic test, for a patient whose family has a $4,000 deductible, at which point a 90% coinsurance rate kicks in from the insurer, until the patient’s family hits their maximum out of pocket expense of $5,000. When we do the math in this situation, the patient would be faced with a $4,100 bill if their family hasn’t had any medical bills yet that year; $4,000 for the deductible, and an additional $100, as the insurer would only be required to pay 90% of the remaining $1,000. After an additional $9,000 in health care bills, the patient would pay an additional $900 in out of pocket expenses, at which point, there would be no further obligations to the family. This can be a staggering amount to pay for most families, hence, it is useful to explore with your employer if there is any access or matching to health savings accounts or flex spending accounts. Health Savings Accounts (HSA’s) allow individuals to divert $3,450 and families $6,900 of tax deductible income to special accounts designated just for medical expenses. If your employer does not offer a High Deductible Health Plan with a HSA, individuals and families can still pursue a flex spending account (FSA) on their own. These funds are set aside to ensure funds are available for the patient responsibility aspect of bills – while they aren’t always enough to cover the deductible, these funds can help accommodate high deductible impact. In our example above, a patient who had contributed $5,000 to their HSA would be able to use their HSA to cover all of their family’s medical expenses for that year. Further, while every state has different rules, it is quite common for a patient or family to also qualify for secondary government aid like Medicaid, even for working individuals or those who do not qualify outright for government aid based on income. It is worth exploring in your state your eligibility and especially if there is a Medicaid spend down policy, which lets one deduct medical expenses from their income to demonstrate need. This secondary coverage would kick in for all items designated as “patient responsibility” and further reduce the burden to patients and families.

Work with your doctor or provider on timing of tests (sometimes to space out, other times to occur after employer match, etc):

After working through this tedious process, one begins to have an understanding of the ins and outs of their plan, their medical condition, their benefits package, and even their government aid eligibility. At this point, one might discover that they are only allowed one diagnostic test per year, and yet, their provider has scheduled one every six months. Talk to your provider. Sometimes, they are willing to shift the testing to once a year. Conversely, if they feel the medical condition is such that this is required, they are willing to provide additional information to the insurance company to help them understand why there should be an exception in this case. Insurers often provide these exceptions, but may need additional information from your provider. Likewise, a test, procedure, or visit may be required regardless to address the medical situation at hand; in these circumstances, many work with their providers to schedule after their employer match, or later in the year to allow the HSA to fill up some more. The medical situation may not always allow for this flexibility, but without partnering with your provider and asking, they wouldn’t know to even try.

Other options include calling the hospital and asking if they are willing to settle for a lower amount or work out a payment schedule.

All things considered, it is not uncommon to work through all of the above, and still have a large bill on hand. At this point, call the number on your bill, and explain your situation. Many health care organizations will work with patients to understand financial need and income levels, and from there work on either a negotiated settlement amount or a payment plan.

Give yourself permission to work through these one step at a time. Healthcare finance is complex, in large part due to the fact that each and every interaction can be so wildly different than the next, even for patients with the same condition. Push back, question, advocate for yourselves, and help your care team understand the limitations of your health plan – at the end of the day the entire health infrastructure is here to take care of the patients, and even the billing office can be a crucial partner in managing one’s serious health condition.

 

Aaron Kinney was born in Oakland, California. He completed his undergraduate work at the University of California at Davis where he received a Bachelor’s of Arts degree in Political Science with a minor in history (2005). He holds a Master of Science degree in Management from New England University (2009), and a Doctor of Business Administration from the University of Wisconsin – Whitewater (2017). Aaron also served as a Medical Service Corps Officer in the United States Army from 2005-2012, serving as an aero medical evacuation officer, and earning a bronze star each for his deployments in Iraq (2007-2008) and Afghanistan (2010-2011). Aaron is currently the Executive Director of the Herma Heart Institute at the Children’s Hospital of Wisconsin in Milwaukee, Wisconsin, and a credentialed Fellow of the American College of Healthcare Executives.