Living Life in a Hospital With My Medically Fragile Daughter

Margaret, a dedicated mother of four, was struggling to manage her youngest daughter’s deteriorating health.

Sofia had a rare genetic disorder and needed full-time medical care that wasn’t available in her home state. As her condition progressed, Margaret made the difficult decision to transfer Sofia almost 300 miles away to a children’s hospital; the place they would eventually come to call home.

Medically fragile children spend a large part of their life in the hospital. For this reason, pediatric hospitals place a primary on patient experience, but a new consideration is coming into focus: the experience of parents that, for all intents and purposes, are living at the hospital as well, while fighting for their children’s lives.

This is Margaret’s story, in her words:

Can you imagine living in a hospital for 2 1/2 years? Not so long ago, that was my reality. Everything familiar, everyone I trusted and loved, including my family and my children, were halfway across the country.

Sofia as a young girl; she started displaying symptoms at six months of age.

I was alone caring for my sick daughter at a large urban hospital in a strange town. It’s a busy place, but I barely noticed because my life revolved around Sofia’s hospital room located in the intensive care unit otherwise known as “our home.”

Sofia was isolated, so visitors were restricted. My daily interactions were reduced to nurses, doctors and patient care assistants. My life’s soundtrack: beeping pumps, whooshing monitors and shrill ventilator alarms.

Living in the ICU

Living in a hospital is difficult to wrap your mind around unless you’ve experienced it. It’s disorienting and difficult to navigate. Hospitals weren’t designed as long-term housing. Consequently, I faced a lot of challenges obtaining resources beyond the hospital’s campus. Simple things like grocery shopping, paying bills or having a meal that didn’t include institutional food were, at best, difficult to secure.

I’m strong-willed and independent by nature so losing the freedom of self-sufficiency was devastating. I had a car and a keen sense of direction, but I couldn’t leave Sofia’s side.

Most parents in my shoes struggle with the emotional conundrum of desperately wanting to leave the confines of the hospital, but not their child’s side. Any moment could have been Sofia’s last and what if I wasn’t there to comfort her in her final moments? How could I live with myself if my daughter ended up leaving this world alone because I was shopping for toiletries at Target or picking up a latte from Starbucks?

A Helping Hand

On a long enough timeline every parent in this situation ends up at what feels like a breaking point! Mine, outside of the ups and downs of Sofia’s illness, was missing the birth of my sister’s first child. I poured my sadness and disappointment into finding the gift of all gifts, but much like Sofia’s health, it was out of my reach.

I was sitting on a hallway bench visibly upset. A woman sat down next to me, introduced herself as Jennifer and asked: “How can I help?” At that moment it occurred to me how desperately I needed to hear those four simple words.

Jennifer explained she was part of the hospital concierge team. A service provided by the hospital for patients, their families and guests.

Sofia surrounded by her family.

Twenty-four hours later my sister’s shower gift was delivered to our hospital room along with a warm meal that didn’t come from the cafeteria! The next day Jennifer brought me the first decent cup of coffee I’d had in weeks.

These things may seem small or insignificant, but you recognize their importance once they’ve been taken away.

The patient concierges stopped by our room every day while rounding the ICU. I counted on them to be my link to the outside world.

When you’re living through a situation that’s as unique as mine it’s hard to find other people that can relate, which only serves to reinforce the feeling of isolation. Often times Jennifer would stop by just to chat for a few minutes, like a friend that calls to ask how your weekend was.

She wasn’t awkward or tongue-tied over the gravity of my situation and she wasn’t cool or clinical either. She was my friend. The person that understood on a deep level the complex emotional path I was on.

From that point forward the hospital concierges were my hands and feet. They gave me the gift of normalcy by serving as a friendly face in a sea of strangers. I could always count on their warm smiles and words of encouragement.

Paying it Forward

As my world at the hospital expanded, I came to know other families struggling just as I had so I started introducing “newbies” to the concierge team. Together we became a community of support for each other.

When my journey ended as a patient’s parent, I found myself called to help other families. Today, I’m a patient concierge. Having lived in loneliness, isolation and fear as the parent of a sick child, I understand their needs.