Beyond Survival: Three Personal Life-Changing Experiences as a Heart-Warrior Parent
The birth of our daughter forever changed our lives. However, three specific experiences inspired my advocacy for our children, commitment to offering support, and drive to empower parents.
Having children was always high on my priority list. So, when I found out I was pregnant, I was ready. To be fair, I knew nothing about having kids, and more importantly, keeping them alive, which was, at the beginning, literally the only skill needed. During our seven-month hospitalization, I saw parents giving up, children stronger than any adult I've ever met, and children losing their fights. I saw doctors with God-like skills and nurses with a touch of an angel, but also others who hurt the soul more than they healed the body.
Everything that followed from the moment our Emanuela came into the world not only turned my life and beliefs upside down, but it also chewed me up and, sometimes, it feels, spit me out too.
The First Time I Saw You
The entire pre-birth time was dedicated to learning about heart defects and preparing for a life of unknowns. We met doctors, visited the wards, furnished the baby corner with a few basics since we didn't know when (and if) we'd be bringing the baby home, and set the protocol for the birth and moments after. Here, I do not mean the birthing plan. Far from it. I couldn't care less about the labor itself and the delivery, the breathing exercises, moves to ease the contractions, and positions to enhance the comfort of a woman tearing, sweating, and screaming to bring a human being out of her body.
(Pampers explains What to Include in Your Birth Plan)
The only "delivery preference" and instruction for my medical team I had was - to keep my baby alive.
On top of not really caring about myself and the unimaginable pain I was soon to experience, I changed a few countries during those months. We started this journey in Lebanon. I sought a second opinion in Slovenia, my birth country. Eventually, I decided to give birth in Slovakia, my husband's homeland. There was simply no time, let alone the will, to attend a birthing class and learn how to push. If my grandma managed... I remember thinking. So, the birth went as well as it could in such circumstances.
I was given a vaginal tablet to induce the labor around 7 AM. The action started a few hours later. By 12:15 - there she was. A little greasy alien covered with thick black hair slid out of me and down the old-style slippery metal birthing table, straight into the doctor's hands. It was all that I saw of her in a split-second moment before she was gone, taken by the emergency team on standby, ready to transport her to a neighboring pediatric hospital and children's cardiac center. I stayed alone - as if she never were.
Following our prior agreement, my husband ran after them. He managed to take a picture of her beautiful face, and after finding out where he would find her a bit later, he came back to me. It was all done and out of my hands now. My body, exhausted from the physical effort it had just endured, but also from months of mental burden and anticipatory stress, crashed to sleep. My husband's hand in mine was all the skin-to-skin bonding I got after giving birth.
I woke up more than an hour later, finding myself being wheeled to a post-birth ward where moms walked the hallway with their newborns in their hands. The nurses there were kind though. They gave me an empty room to deal with myself, by myself. I mean, my mom was there. My husband was coming and going, juggling between me and our newborn, in two separate buildings. Nurses were catering to my recovery needs. And yet, in a room where doors always seemed to be opening and closing, a special kind of loneliness crept in. A feeling I did not recognize.
In the days and months that followed, I felt, experienced, saw, and learned too much not to be shared. Our story can be a survival guide. And I do not mean that in vanity, but with gratefulness to all the stories I found of others, that paved the way before, and helped me just by knowing I was not, in fact, alone.
· Approximately 1 in 100 babies are born with some form of heart malformation.
· Around 1 in 4 babies born with a heart defect will require surgery within the first year of life.
· There are approximately 70,000 individuals worldwide living with a Fontan circulation.
For more information, visit Children's Hospital of Philadelphia and Fontan Outcomes Network
This changed me forever. The need to raise awareness grew in me, and it lead me to advocacy.
The Mother I Will Never Forget
Of all the hard things I wrote on these pages, I fear what's coming might be the hardest. I am not even sure I'm ready to write about it, nor do I feel I have the right to retell the experience of another mom. But the pain I peeked into shaped who I am today.
The ward had already become our second home. The staff was familiar, we built friendly relationships with many, and I became versed in taking care of my tubed and wired baby. It's to say - I was comfortable. And confident. A feeling of almost being safe reappeared in my life. That's when I met a girl and her mom. They were new to me, but not to the world of children's cardiology.
The girl must have been 15, or a year or two more or less. She seemed relaxed, and from the look of it, nothing much bothered her. Sure, she was with us at the high-level care unit, but nothing from the outside gave away why would she be a high-level maintenance patient. She spent days mostly just sitting on her bed, chatting with her friends online, and browsing her phone. Her mom barely left her side. It was a relationship I wished I'd have one day with my girl. They talked and laughed a lot while exchanging what each of them stumbled upon in their virtual realities. Honestly, for the two of them, there was no such thing as screen time limitations. I remember that because it happened at a time when I believed kids and their parents could survive long hospitalizations only on books, board games, and conversations. Silly me. A rookie mistake. Or, prejudice, to call it what it was.
As time passed, we got to know each other. Superficially. When your child, and everyone else around, has a future as uncertain as ours was, you do not want to get too close to anyone. There are always a few with whom it's inevitable, and with whom a relationship builds basically by itself. But with most, I wanted to keep a distance. So, I got to know their names. I learned that it was not their first rodeo and that there were many school friends rooting and waiting on the other side for the girl to come back to them and face the usual teenage challenges. They told me they were in for a surgery that was scheduled within a few days.
They left the unit soon after, and I hadn't seen them in a while. Until one evening. I don't remember where I was going, nor why, but there they were - with other parents, sitting at the dining table in the hallway. With their mobiles in their hands, but at the same time socializing in the real world too. I stopped to chat a bit. They said they were up on the schedule - the surgery was the next morning. Their smiles masked the worry.
"It will be okay," I said. "Everything will be okay!"
You will never hear me say that to anyone ever again.
Days later, at the Intensive Care Unit, her mom was holding her hand until the girl's last breath.
By coincidence, I was with them - from the outside. Trying to shake away the thought and stabbing feeling that that will be me one day...
They had their privacy, but through a few centimeters of the open door, I got a peek into their most intimate moment. When it was time, the mom left the ICU with a quick step, head down, without a word to anyone... rushing - to fall apart.
The girl who lost her battle, and her mom, found an eternal place in my heart. They became the fuel to power my need to offer support to anyone who needs it, and wants it.
Saying the Wrong Thing
Throughout my life, both personally and professionally, I have come across many different doctors and medical professionals. It used to be fun to verify or falsify the stereotypes about surgeons, or ER doctors, or nurses. But eventually, the things I heard in the rooms and hallways not only stopped being funny, but became disturbing. Every wrong approach leaves a mark, and that only strengthened my belief that basic communication skills should be part of a medical school's regular curriculum.
It is inexcusable for a nurse to say to a mother that her baby cried so badly during the night she wanted to toss her through the window. Or for a doctor to console a mother by saying she's still young and will have more children after she was given the worst news about her newborn. Or for a nurse to repeatedly barge into the room to ask a mother saying goodbye to her baby whether it's done yet. Or for a cleaning lady to slam the door of a hospital room open and turn the light on before the sun is out. Or for a doctor to cater to a child's less life-threatening needs in a less than the best possible way, while turning to the mom's questions with a look that questions if she's aware it does not matter because the child is seriously ill anyway.
Having written all this, I feel obliged to every single one of the medical professionals who did right by us, to emphasize that the bad is not the mainstream! The bad is just as rare as the extraordinary ones are. I just cannot decide whether the two balance each other out.
In any case, my approach towards the bad was always to kill them with kindness. The grumpier the nurse, the bigger the smile on my face - at least when I had the energy. Most of the time, I felt resignation. I saw it in other mothers too, who were often too fearful to ask questions or too respectful towards the white coat. We were taught for generations not to question what the doctor says. But there is nothing as liberating as when one of them tells you: "I am not leaving until you've asked me everything you need to know." The funny thing is, all those million questions you think you have in your head suddenly reduce to only a few. This made me realize that parents need to be systematically empowered to speak their minds, however silly one may feel. It takes courage to be vulnerable like that, to expose yourself to being judged by someone you consider smarter. But if those supposedly smarter do judge, it says more about them than about us. Asking questions means learning, and learning means providing better options for our children. Knowledge is power!
All of this influenced the person I've become. I want to advocate for better care to improve the quality of life for our children for as long as I have it in me. I want to offer whatever support I can to any parent who sees the value in what I have to give. While it is easy to be carried away by everyday life and to mistake calm waters for a life like any other, the fact is that our children live on borrowed time and that the next birthday is never guaranteed. That is why we must never shy away from speaking our minds. When fighting for the best outcome for our kids, there is no room to feel awkward, intimidated, or rushed when talking to any member of our child's medical team. I strongly believe that empowered parents can make a difference - for themselves, their children, and ideally (or maybe naively) for the system as a whole.