After the Diagnosis: 5 Key Steps for Every Heart-Parent

When I heard the diagnosis for the first time, I felt lost. As I slowly began to comprehend the future we would face and mourned the life I had envisioned, I found myself with more questions than answers at every turn. Every search on Google needed to be taken with a (heavy) pinch of salt. So, I approached it as I would any other assignment, much like many others I had during my decade as a journalist: I arranged meetings with doctors who could provide the best answers and scheduled a visit to the wards at the Children's Cardiac Center in Bratislava, Slovakia, the institution we had chosen to care for our baby.

Knowing what I know now, there are certain things I would have done differently. However, there are some steps I would advise every expectant heart-mom not to skip.

1.Meet with a Surgeon

As I gathered more information on Congenital Heart Defects (CHD) and specifically, what it meant to have a single ventricle heart, I realized what I wanted to know most was how they could fix it.

We wanted to understand everything about our daughter's heart, her diagnosis, the procedures we could expect, the options we might have, and the potential outcomes. I needed to hear about the worst-case scenario as well as the likelihood of complications. We wanted to be able to make informed decisions when needed.

This meeting took place around 6 months into my pregnancy. Leaving his office, we felt reassured that our girl's life would be in good hands. And that meant more than any information provided.

The second meeting, a few weeks before giving birth, aimed to see if the latest anatomy scans and check-ups affected the earlier explained protocols and expected timeframes for surgeries. But also, honestly, we wanted him to get to know us a bit more; we wanted to humanize his patient-to-be and remind him, in a way, that by operating on our baby girl, he would be responsible for more than one life.

2.Visit the Hospital

"Make sure to gain insight into the post-operative care," advised one of my friends, who has a son with the HLHS. He was the only person I knew with any experience in that context. "The surgeon can perform miracles, but it can all fall apart with the doctors and nurses later on," he said, and I took it to heart.

We were assigned a nurse to guide us through the workings of the Intensive Care Unit (ICU) where our daughter would be admitted after the open-heart surgery. He answered all our questions, from protocols to visiting hours, arrangements needed for an urgent baptism, as well as our rights and obligations. With permission from the head of unit and one baby's parents, we were allowed to respectfully visit their newborn and see exactly what our baby's life would be like in the first few weeks after birth. Little did we know it wouldn't be weeks, but months...

After that, we met with the Chief of the ICU, who provided a wealth of information on life with a single ventricle heart and the long-term impact of reduced oxygenation on other organs. Later, one of the cardiologists joined us, and we will forever be grateful to both of them for stepping outside their official roles and gently warning us about the challenging road ahead and reminding my husband and me not to forget nurturing our relationship too.

Upon our arrival at the cardiac ward, we found ourselves speechless. Despite the overwhelming emotions, the visit proved immensely beneficial. We explored the rooms, seeking clarity on practical matters such as sleeping arrangements for parents, essential items to pack, and available resources for breastfeeding support. We familiarized ourselves with the food availability and the visitation rules for our extended family and friends.

3.Talk to Another Parent

Having a single ventricle heart without medical intervention is not compatible with life. And medical interventions do not exactly fix it. They may prolong life for years, even decades, but care is palliative in nature.

Once we understood the theory, we wanted more practical insights. We asked the doctors to connect us with a family who had a child with a similar diagnosis. Meeting the two-year-old boy, his twin brother, and their mom was reassuring.

The mother's support and guidance helped me make certain decisions on how to navigate daily life with a hospitalized baby. "Make sure to get out, catch some air, and go home to shower," might have been the best advice I received in months. In my mind, I had planned to stay day and night with my baby girl, not caring about eating, showering, or anything else. But a parent's comfort isn't really the question; it's their sanity that's at stake.

4.Practice Self-Care: Body and Mind

The course of surgeries and recoveries, with its ups and downs, is uncertain. Some babies are released home within weeks, while for some, like us, the hospital becomes a second home for months. Regardless, the child needs a strong and clear-headed parent, ready to make decisions, fight for the best care, and provide endless love and support. Basic self-care, like eating, sleeping, and getting fresh air, is crucial. If the hospital provides it, do not shy away from therapy or support groups to help cope with emotional challenges.

All of the above might seem to state the obvious, but when consumed by "life or death" worries, the basics become the last to consider (and often very challenging to carry out).

5.Build a Team

Having a medically challenged child adds significant stress to a marriage. Some may fall apart, but some couples manage to find ways to navigate difficulties together and strengthen their relationship in the process.

From the very first question after receiving a prenatal diagnosis, which will most likely be about terminating the pregnancy, to making decisions about surgery or heart transplant or end-of-life care, it's crucial to be on the same page with the partner. Invest time in building a common ground, defining shared values, and making decisions together.

Additionally, having a support network of family and friends to share tasks and provide emotional support is invaluable (even when preferring to be left alone).