August 28, 2014 was one of the hardest days. My ultrasound on August 11 showed that the baby’s right ventricle output tract was bigger than expected and they wanted me to get a fetal echo. I was nervous but knew everything will be fine. Why wouldn’t it be? Everything has always been fine for me. This was a super easy pregnancy from the beginning. I was having my first baby and everything was going so well.
The echo took more than an hour. Once the doctor was done he said “Ok! I know enough to discuss.” I knew in a split second that this is not what he should have said. He grabbed a pen and a paper with a heart diagram, further confirming that something was not right. I looked at my husband and knew that he was also bracing up for the news. The cardiologist then went on to explain what was wrong – “Coarctation of Aorta” and a “large VSD.”
My heart sank – a hole in the heart? I had no idea that, in fact, it is the coarctation that is the bigger evil. But the thought that there is this hole in my baby’s heart brought my world to a halt. I tried to smile and wanted to remain calm. “Now let’s discuss how we will fix it” and he started explaining the typical surgical procedures performed on a newborn and explained how the incision is either made in the middle on the sternum or at the side of a left shoulder. Wait what? I could not believe this would require a surgery on a newborn. On a newborn! It was at this point that I could not hear any further and keep it together. I got up to rush to the restroom where I could scream and cry. But the doctor asked my husband to hold me. I wanted to tell them to let me go cry alone. I really wanted to go and cry. I had to cry. My husband held me and I cried. I didn’t have the strength and composure to tell them to let me go cry alone.
I have to cry, I must cry, I should cry, I will cry. The doctor left the room and I cried hysterically. There was this deep pain and three broken hearts – one with a hole and the two that were not whole anymore. There was just pain and I didn’t know what it was made of. I just had to cry – it was biological, emotional and natural. Everything had changed. It was the same room, the same air, the same city, the same day, only I was not the same and hence nothing was the same. The ultrasound room was dark, as if to reflect the darkness that swiftly surrounded us and our little baby. Painful, dark and dangerous – a sad little hole in the heart.
By the time the doctor returned, I was able to compose myself for the rest of the meeting. He seemed to focus on my fears as a mother explaining how the scars will not be prominent when she grows older. I had no time to think this far. I was just thinking of a hole in my baby’s heart. He explained how in the 21st century these problems can be fixed with the advanced medical science. He assured me how they do these surgeries every day. But for me, these were just words with no comfort. Perhaps being a pediatric cardiologist, it was his job to break the news and then comfort. Maybe he had seen enough to know how a mother would react, what parents go through, and had heard about all sorts of fears and anxieties. He said “you started crying when I talked about the incision. Your baby will not feel this. She will not even remember any of this.” I did not have the time to analyze what exactly made me cry earlier. He talked about resilience in babies, pain management in hospitals and how my job is to remain calm in CICU after her birth, as babies can feel their parent’s stress. But this was of no consolation to me. This was too far ahead. I just wanted to go home and cry. All I could think of was my baby’s walnut-sized heart and the things she must endure.
The loss, the new world and the new perspectives
Crying – I started crying again on the way out to the parking deck. How could it be? What could have I done differently? Why my baby when so many miracles happen every day? Biological, emotional, spiritual – at all levels I had so many questions but no answers. So much sorrow and grief – and an immense sense of helplessness. Crying was the way to grieve the loss of a healthy baby, the loss of a happy pregnancy and what my baby had to endure for the rest of her life. Why her? Why not me? Crying in the morning, crying in the evening, crying at night. Crying in the bed, crying in the restroom, crying in the kitchen. Crying while driving, crying when cooking, crying when praying. Crying alone and crying on my husband’s shoulder. Crying silently, crying secretly, crying hysterically. I had become a weeping willow.
The grieving mother – Before the echo, I saw a pregnant woman in the waiting room. She was accompanied by her boyfriend or her husband. She looked angry and seemed very cool and distant to her partner’s attempts to soothe her. I observed her and at some level judged her to be an unfriendly person. When I returned home, at some point I thought of that woman. Her face was in front of my eyes, on which now I saw grief not anger. Perhaps, like me she was dealing with the loss of a healthy baby. Her coolness and apathy were not rejection of others but immersion in her own world of grief. She was there but not there. Now that I had entered her world, I saw her with a different set of eyes and an aching heart. How could I not see her pain before?
Anger – When not crying, I had to deal with more complex emotions. I am angry at everybody. At people who are unhappy but have healthy children – not one but many healthy children. People who don’t want children and have children. At pregnant women, who have successful pregnancies but can’t be happy because they have to deal with annoying relatives or in-laws. At young people, who are healthy but can’t be happy cause they don’t have the best job or the best car. Why is this world full of ungrateful people?
I am angry at my family. Nothing they can say or do, or not say or not do can be right. If someone would talk about routine stuff or have small talk with me, I would boil in anger silently. How could they not understand that I am in constant pain. I don’t care about anyone or anything else. Just grieve with me or disappear. They don’t understand. What do these people know about adversity, about a long, sad evening, about a heavy tearful night? These happy, fortunate people – they have no clue what they have. They have no idea what they took for-granted was a result of million miracles. A healthy newborn baby overcomes million possible hazards. Why the heck my baby’s aorta did not develop fully? Why is there a hole in her heart? These others will never understand what is this uncontrollable, overwhelming, all-consuming pain. I was engulfed in my grief; I was blind and furious, choking on this impenetrable and isolating pain.
Grief and self-pity – What could it have been? I would imagine how I would have been today, if August 28 did not happen. I would think of days pre-August 28. How happy I was. Many days I even forgot that I was pregnant. Now I could not forget this pain as a mother. I looked at a pregnant woman who was happily planning her baby’s nursery and I silently wondered, does she have any idea how lucky she is? Her hardest decision might be choosing the color scheme for the nursery, while I have to select a doctor to cut up my tiny baby’s heart. I would marvel at the disparity in this world. I was forced to think about the world of pain and its dwellers.
I had to exercise emotional labor to remain composed at the job. I had to pretend how much I enjoyed my pregnancy. People would ask me questions about nursery, shopping, baby’s name, and day cares. I would play the part, smile, show excitement and wish the conversation to be over. At times, I would feel like an impostor who has no right to be a part of the healthy-pregnancy club. It was only home, where I could take off the mask, cry, and be depressed and miserable.
The Amazing heart – What a marvelous, complicated organ this heart is. Unfortunately, I learned to marvel at this powerful organ because of my baby’s broken heart. An incision to open up my baby’s heart? How could it be? How can I bear this? How will my baby endure this? I did not even know that you can do a heart surgery on a newborn. I never had to think about it. Now all I could think of was my delicate baby, her heart and a knife. I read the book Walk on Water: The Miracle of Saving Children’s Lives. I finished it within two days, often crying at the stories and marveling at the skills of pediatric cardiologists and surgeons. This book convinced me that I got to find the best hospital and the best surgeon, as it brought home the point that pediatric cardiology is the most difficult field of surgery. It made me aware of the financial politics of pediatric hospitals. I read and read and read some more – google search, google scholar, support groups, webmd, give me anything to read.
Acceptance – It took me about two months to accept the reality. It did not mean the grief and the crying was over. However, I began to understand that I can still be happy about my pregnancy. I still have my baby. I will still give birth to my daughter. I still am pregnant and my child is growing. Whatever it is, now I know what to do and I have a plan.
New found appreciation – I had never deeply thought about the parents who have children with high medical needs. Now that I frequently visited children’s hospital, my eyes opened up to this hidden world. Earlier, I would look at a high need child, devote few seconds to acknowledge the hardships the child must endure and move on with my life. Now I looked at these children and could not stop thinking about them. At one visit, in the hospital corridor I passed by a 4-year old girl. I won’t elaborate on her particular challenges because what is important is that she was a little girl. I kept thinking about her life, her family, her mother. How is it for her every day? How does her mother deal with the thoughts of her future? How does her mother plan for her little girl’s life? How many times this family visits the hospital? Is she getting better? What kind of heart and mind her parents have? Do they have more compassion than average parents? Are they stronger? Are they more generous? How does this world look like from their stand point? I had a new found appreciation for these amazingly compassionate parents.
The shaken faith – How do you deal with this enormous challenge? What keeps you going on? My faith was shaken. I had a broken heart and a broken faith. Nothing mattered anymore. I was angry at God who gave me every thing but did this to my daughter. I was only praying for the sake of my daughter. However, this half-hearted faith kept me sane. Broken though it maybe, it helped me take one step at a time. Although it could not heal my pain to the deepest level, it kept closing the wound that kept reopening.
At a particularly difficult time in my pregnancy, when I was dealing with yet another complication, I cried all night. I thought how can I go on when the bad news just keeps coming. There was no end to it. There were no guarantees for me that if I endure this, it won’t be any worse. How do people go on? I was reciting Surah Rahman while crying in bed. I got stuck at verse 27 “Nothing will remain forever but only the face of your sustainer – full of majesty and glory.” Maybe you can go on because it all ends. Even this pain would end, no matter how worse it gets. Next thought in my head was the majestic and glorious face. How can that face be any compensation for anyone’s pain? Could it be that the face reflects parent’s compassion and love for their high need children? This is the only way I could fathom the eternal, majestic and glorious face. This face embodied all the love and kindness of these parents. The pain they endured died but the love and compassion they shared lived on forever in the eternal face.
This is how my mind and heart were wandering in the land of desolation. Pain, cry, sleep, cry in sleep, awake, ruminate and then some more pain. That night was immensely painful, the lowest of the low. But at one point, I finally found some peace when I felt this movement inside me as if my baby girl had opened both her arms trying to hug me. A feeble impression, a fleeting thought, a defensive biological response of a pregnant woman’s stressed brain or divine help, whatever that it may be, it gave me peace. I felt my baby was hugging me and telling me not to cry any more. I felt asleep after that.
For every depth there is a deeper pit
I started with the feeling that what I have must be the deepest sorrow a parent can endure. However, through support groups I came across so many different stories. I learned about so many challenges that were in the world of heart babies. Dealing with a heart baby when you conceived after many many years of fertility treatments and associated emotional roller coaster, dealing with more than one heart babies, dealing with a heart baby when battling cancer yourself, dealing with a heart baby when in financial crisis, losing a heart baby after many years of painful surgeries and medical procedures – the list goes on and goes beyond the world of heart babies. How does it feel to lose a child to cancer, to lose a baby in a war, in an accident? How do you live after your child is missing and you don’t know who stole him and whether he is even alive anymore? I found myself thinking about all these scenarios and whether one is more painful than the other? I thought maybe parents whose children die at birth or who have miscarriages are slightly better off than all the above scenarios. You just bury your child, grieve and deal with that one type of grief. You don’t have to live and die every day with uncertainty.
Sometimes I censured myself for such horrible thoughts. What am I wishing for? Am I a coward? How can I judge who has it easy or difficult? What is my business weighing others’ grief, measuring others’ sorrows? But I felt compelled to think about all sorts of pains parents must endure and then imagine which is the deepest of all. I don’t know why. As time went on, I realized, whenever I thought I found the hardest trial, shortly after I found another one harder. This new world of parents and children had no bottom – I could keep digging and would keep finding deeper pits. I could only see pain and sorrow in these depths. At some point, I started seeing grace and beauty as well. This was a world that is hidden from our view. Hidden and unsought. A world, nobody wishes to enter but some have to. Once you enter this world, first you are overwhelmed by its profound pain. Gradually, you learn to breathe and acclimatize; begin to surmise its substance and grace. The medium in this world slows you down to a pace where you can look a little deeper than you would, feel a little more than you could, and be a little gentler than you should.
Grace and miracles
The days and nights were ebbs and flow of hope and grief. One day a new-found hope cause we are exploring this upcoming medical research on fetal hyper-oxygenation and contacting doctors in different hospitals. Other days we are down in dumps as new fears and anxieties have emerged. In these ebbs and flows were spread many moments of grace and wonder. Wonderful mothers of heart babies, who I reached out to. As if they knew better than I did, the emotions I was and will be experiencing, the things that have happened and will be occuring. Along came another amazing mother who was an attorney. I was in the middle of a frustrating battle with my insurance company. Just like that she turned around the situation for me. I would have lost myself in a never-ending chain of emails and phone calls with the insurance company. She appeared from nowhere and generously fixed the problem for me.
Simple words of others just guided me along. “You have to go to a high-volume hospital for a cardiac surgery” said my brother and there were planted the seeds to get up, pack and move. I had to give up my plans to deliver at home and must prepare to be wherever I needed to be. “Dr. Lund is the best OBGYN” suggested my sister-in-law and here there was the most considerate and competent physician who was willing to take me in his care in the last four weeks.
“Tweddell is the best surgeon. If they have come this far to Milwaukee they have to ask for him” stressed my brother’s friend and without understanding the full impact of it, we probably made the most critical decision for my daughter’s entire life. “Don’t worry. We will ask Tweddell. But just that you know, he is generally not in town during the Christmas week. But I will ask him”, assured the case nurse and the next thing we know, it is happening. Dr. Tweddell’s dexterous hands have performed a miracle on my baby’s heart. Each time we see her cardiologist, he admires the outstanding job done by her surgeon,”if there is a perfect outcome, she is the example of it. You could not have asked for a better outcome.” This surgeon and his team did their job – but their job is a matter of life and death. What is the price for this gift? My baby was not born with the miracle of a perfect heart but was granted the grace and gift of a perfect surgeon.
“I will pray two nafals for the rest of my life to show gratitude for Alia’s health and safety” said my sister and my mother. “We are praying all the time, we have not slept for two days because we are praying”, told my parents on the night before surgery. “We went to pray to the church on the hilltop” told my parent-in-laws. “We all are praying and reciting surah yaseen” shared my aunts. “I will keep you in my thought on the day of Christmas”, “we will pray for you at the church” said friends and colleagues. Prayers and good thoughts of so many friends, family members, relatives, colleagues and even strangers were sent her way. So much grace that all the pieces fell in the right place to light up the path we were dreading to travel.
The hope and the normal
My pregnancy was the hardest part. However, once I had the baby, despite the anxiety of the impending surgery and continued care and follow-ups, having her in front of our eyes, made everything much easier and natural. The baby brings with her hope and love that helps take attention away from the doom and the gloom. Particularly, if the outcomes are good and the baby thrives, many worries and issues just melt away in the sunshine. I have not traveled the road of those parents who continue to deal with more surgeries. I can’t pretend to imagine how one deals with that situation. Also, I have no idea what is out there for us in future. However, I would imagine that at least partly the coping depends on the the warmth, joy and the love that the newborn brings. This is how things became normal for me. A thriving happy baby helped me grasp the fact that it is her life. I saw with my own eyes that though she is born with health challenges but she also has the strength to deal with these. At the end, it is the child that demonstrates that she got it.
Nonetheless, this experience drains you. I read somewhere that parents whose babies go through heart surgeries experience PTSD. The constant stress just drains your resilience. You live in a state of constant arousal and stress so that it becomes harder to go back to a calmer state. It sets off a vicious cycle of hyper-arousal and calm-avoidance. Your body actively resists calm, reflection and meditation. But you have to work on rebuilding your resources. One by one, you must experiment with what will restore your stamina by finding enjoyable and calming activities. This also includes eliminating the avoidable and unnecessary stressors. You simply don’t have time for this.
Thank you for reading my story.
I dealt with my stress by researching, knowing and preparing. This is how I deal with stress. I have to know. Here are some links that have helped me know more about the world of heart babies.
Walk on Water: The Miracle of Saving Children’s Lives (This is truly an amazing book to know about the world of pediatric cardiology. I would recommend it for any parent as well as professionals in pediatric cardiology).