Memorial story

Sophia Volino

by Stephanie Volino

Our daughter, Sophia, would randomly vomit when something she ate wouldn't agree with her stomach—or so we thought. Our doctor had put her on Prevacid, and for most of the summer and it seemed to be working well. One night at dinner right after her two year check up (her birthday just recently had passed on August 14th) she had an unusually bad episode of throwing up and fell limp in my arms when my husband and I were cleaning her face off at the kitchen sink. It might have been a mother's instinct, but I knew something was wrong. I told my husband I was taking her to walk-ins at the doctor's office the next morning.

I remember vividly standing next to my daughter in the office as I talked to him about what had occurred the night before and didn't understand why it almost seemed like- what I described as a violent projectile vomiting episode- when she had been doing so well. Although he doesn’t usually refer his pediatric patients to a specialist until around two and a half (because sometimes toddlers grow out of spitting up), he agreed it was best to get the ball rolling, especially if she needed to go on a special diet. After I left the office, I made an appointment with the new doctor for September 11th.

I am a teacher and at school, a special program was going on for 9/11, so my husband took off of work to take our daughter to meet with the specialist. I was worried, but thought in the back of my mind that Joe, my husband, would come home and say she was lactose intolerant, and have a list of foods/dairy that she could not eat or drink. I knew it would be a rough road, but we would adjust.

During the 9/11 program, a colleague walked up to me and told me to call my husband as soon as I could. I remember walking into the hallway with my cell phone and my mind was running rapid. I heard my husband say, “She needs to have a procedure done to get some tissue samples tomorrow." What? Panic set in and tears started to fall from my face. I got coverage for my classes and went home, where I met my husband and two year-old, sitting at the kitchen table eating lunch. My husband explained that the doctor did have concern because she was slightly underweight for her age and did infrequently vomit without an indication why. He just so happened to have an opening in his schedule for the next day at the hospital he was working at and recommended we get the procedure done.
The next morning my mother came over to take care of my older daughter and see her off to her nursery school while my husband and I took Sophia to the hospital. It was an in-and-out procedure, and we would be home that day. I just felt bad for my poor baby that she was going feel groggy and sore after the procedure was done. Nothing a little couch time and Nemo or Mickey Mouse couldn’t cure when we got home, but we never came home with her again.

When the anesthesiologist tried to put her under, she went blue. He stopped the procedure from happening immediately. They stabilized her and with his good insight had a cardiologist come in to perform an echocardiogram. The cardiologist discovered that the right side of Sophia’s heart was enlarged.

For the next few days, we were just lead by the hand through hospitals and met with several doctors until we found ourselves at Columbia University, talking with doctors from the Pulmonary Hypertension Team. All of the words the doctors were saying raced frantically by my husband and me. My first thoughts were this is bad, very bad, but thank God she does not have cancer. How naive was I?

Almost one week later, we were settled into our hospital room and ready for Sophia’s catheterization to reveal to us where she was exactly at in terms of this disease. I felt in my heart that just as long as we got passed the catheterization, whatever it took, we would fight this with everything we had.

Mother’s intuition kicked in again, though, and I turned to her the night before the procedure while she was playing in her hospital bed (and thought how do you ask a two year old if she is going to die?). “Sophia, can mommy ask you a question?” I wanted to ask her a two part question to really distinguish between yes and no. Sophia sweetly responded “yes” while making the stuffed animal monkey I bought her at the gift shop dance. Then, I took a deep breath to sound as nonchalant as possible, “Is Mommy going to see you grow up?” And instantly, as if I was sitting in the room with someone my age, she turned her beautiful head, looked me in the eyes with her piercing big blues and responded, “no” with all the confidence in the world. And then, just as quickly turned her little head and continued playing.

My eyes welled up, but I fought back the tears and joined in the playtime with her animal. After she fell asleep, I sat on the windowsill and although I’m not an overly religious person (I do say my prayers every night before bed), I ask for a true miracle: recognizing that I could not be selfish and keep Sophia on Earth with my if she was going to suffer, I’d rather her be with God, but would take the best of care of her if he felt she should be here with us. So, we made a deal.

The next morning felt rushed. I really didn’t sleep the night before and woke up to my mother, mother-in-law and husband coming in to be with us during her procedure. Sophia was her same old playful, giggly self stealing the doctor’s pens out of his pocket while he sat on the bed looking her over and running through what was going to happen that day. After she kissed the grandmas and made us all hug and kiss each other-“Now, grandma gives Daddy a kiss. And, Mommy gives Daddy a kiss and hug…” She was extremely loving and cuddly. She was off.

We went into the room and while the anesthesiologist was prepping her we held her hand gave her kisses and said our “I love yous” as she fell off to sleep. Hours went by and finally our doctor came out and told us a bunch of stuff that again flew by me, but that they would put in something called Flolan, which is administered through a tube placed into her surgically. And, although this would entail an additional procedure, we should be going home with her within two weeks. Our doctor said she would come back soon to get us when Sophia was ready to go back to recovery. Although it wasn’t the best news, it wasn’t the worst either. This was our chance to fight.

An hour and a half went by, and we really didn’t know what was taking so long. Then two doctors emerged. Things took a turn. They started talking about a possible lung transplant and the statistics of survival. At this point, all the words flying at me where meshing into one. My brain was on overload, tears were streaming down my checks and I kept repeating, “My baby. My baby.” My husband held onto me very tightly.

The night of September 19, 2007, in the NICU while standing by her bedside singing “Goodnight Sweetheart” and watching the doctors try to revive her, our sweet, sweet Sophia Lynn passed away. Only one short week after this horrific nightmare began, this rare disease, where the lungs develop unusually high pressure that silently cause heart failure, was a part of our daughter’s tragic ending.

One might think Sophia’s story is now over; unbeknownst to us, it was just the beginning of our family’s journey with pulmonary arterial hypertension. We did not fully understand the unfamiliar territory we would embark on as a family. After Sophia’s death, I was searching for purpose. There must be some meaning in all of this.

A few days after her funeral, we went back to Columbia with our older daughter, Anna. Shaking in disbelief that the event that just occurred with Sophia even happened resonated in my heart. We were back again to see if Anna was okay. That day we found out that Anna has an atrial septal defect, and the doctors recommended that we get it closed up before Anna started kindergarten. So, in the spring of 2008, we brought her to a cardiologist to get the procedure done. After an echocardiogram, the doctor sent us back to Columbia. He saw unusually high pressures resulting from her test. Gasping for breath and holding back the tears, I put my daughter Anna in our car after leaving the doctor and stood in the parking garage barely audible to my husband stammering out the words, “This can’t be happening again.”

Our brave little guardian angel, Sophia, would help us discover only months later that her older sister, Anna, was at the beginning stages of the same disease. After Anna’s first catheterization in April, she was diagnosed with primary pulmonary hypertension. The doctors put her on a drug called sildenafil, also known more popular as Viagra. We held our breath until her second catheterization in July.

With the medication, Anna is doing well. Her pressures were halved and the doctors are very pleased with her results so far. In addition to an increase in her dosage of sildenafil, Anna is also now taking Letairis, which also requires a monthly liver function test. Her next catheterization is in January.

To make us aware of this rare disease, our sweet angel Sophia took brave steps to lead us to help saving her sister. I’ve never met a more courageous person in my life. I am grateful for her. I am also grateful that my other daughter is doing so well on medication and living, presently, a very normal five year old life. She just started kindergarten last week and, we walk to school every day with her newborn brother, Rocco. I thank God for my family, friends, and the tremendous support that we have found throughout this tumultuous year. I look up at the sky and smile because Sophia was so brave and is still helping us to fight.

As the first anniversary of Sophia’s death is approaching on September 19th, we, as a family, have found a purpose that we never expected, lost more than we ever should have, and gained new meaning to life. We live every day to the fullest, kiss our kids including Sophia’s picture daily, tell them how much we love them and each other, and walk on this unscripted journey to tell Sophia’s story for her to help find a cure for her sister and others like her.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.