a Little Heart
Goes a Long Way
A Tale of a Heart Princess Warrior
by Rick Singleton
Sophia Castro was born in Plymouth, Indiana on December 30, 2011 at 12:23 AM. Her parents, Ryan and Nickole Castro say they had a relatively typical pregnancy. During doctor visits everything appeared to be normal and the parents were encouraged as they were told “everything was going great” and that their baby was developing normally.
“That day started amazingly.” recalls Ryan. “The birth went very well and within a few hours of Nickole going into labor, God delivered us the most beautiful baby you could ever imagine.” After a long, exhausting afternoon and evening Nickole, baby Sophia and Ryan were resting in the hospital maternity room. “I woke up in the wee-hours of the morning to use the restroom and noticed our Sophia was not in the crib next to Nickole. I woke Nickole and we rushed out of the room looking for our newborn baby girl”. The parents discovered that one of the night nurses had taken Sophia from their room. According to the nurse she came in to check on the baby and noticed that her lips and fingertips were very blue. Both Ryan and Nickole became quite upset that the nurses had not bothered to wake them and inform them of the situation.
The Kind of News We Never Want to Hear
Nickole remembers her shock as the two entered the nursery area. “Sophia was enclosed in this tent-like plastic structure and was receiving oxygen. It was a shock to see our little baby like that. We asked if the situation was serious and the nurse assured us that it was not unusual to have to put a baby in one of the oxygen tents. Yet my instincts told me differently.” The parents discussed the situation and agreed to have Ryan call his sister-in-law, Nancy Hayes, a nurse of 25+ years who was working in the neonatal intensive care unit at the University of Chicago Hospital. “When I informed her of the situation, Ryan said, she said her shift had just ended and she was going to immediately leave for Plymouth. Two hours later Nancy was in the nursery with Ryan and Nickole.
“I gave consent for her to come into the nursery to see Sophia, Ryan stated emphatically. I was pretty confident that she had more experience than all of the nurses and doctors combined.” Nancy reviewed Sophia’s charts and stats, and asked the nurses dozens of questions, according to Ryan. “She was even able to study some of Sophia’s x-rays.” Upon her review of the x-rays, she became very concerned. “Nancy told the nurses that Sophia needed emergency care immediately,” Ryan said. “Then she insisted on seeing the Director of Nursing.”
Shortly thereafter Sophia was being transferred to St. Joseph Regional Med Center in Mishawaka. The conclusion was that the hospital was better equipped to handle this type of situation. Once we got to Mishawaka, further testing commenced. The parents were given the news; Sophia’s life was in great danger. Ryan emotionally recalled the situation, “Our worst fears had been realized. I remember walking out of the elevator to the family waiting area. I felt incredibly sick to my stomach and my legs were getting weaker. My family was now there and they saw me come out of the elevator. They all rushed towards me as I literally collapsed into my brother’s and father’s arms, crying and sobbing profusely. I told them our newborn daughter had some form of a congenital heart defect.” At that point, exactly what type of heart disease baby Sophia had was not yet known, but the doctors informed Ryan and Nickole that the situation was very grave.
How Could It Get Worse?
Upon hearing the news, Nancy took Nickole and Ryan into a quiet corner and strongly advised them to have Sophia transported to Riley Children's Hospital in Indianapolis. “I sincerely feel that it was Nancy’s proper diagnosis and decisive actions that saved our beautiful baby."
At this point both parents reflected on their feelings in that moment. “We were holding each other and we both said things couldn’t be worse” said Nickole. Unfortunately, that was not true. As they were suspended in the moment’s pain, a nurse approached the parents and made a suggestion that nearly put them over the edge. “I remember her saying something about having a Chaplain come and give Sophia a prayer, and baptize her, and give her last rights," Ryan recalls. “Everything she said after that became an audio blur. This was now the best day… and the worst night of my entire life. I watched as my first born baby was baptized and I witnessed her lifeless body struggle for each breath. It was in that instant I made up my mind that she was going to Riley.” Meanwhile, Nancy informed Sophia’s doctors that a life-flight helicopter would be ready in 30 minutes to take her to Riley. Nancy was also calling colleagues and getting numbers to prominent doctors at the children’s hospital.
The Struggle Continues...
The parents began preparing to be airlifted with their baby to Riley. Then the unthinkable happened. A rare, severe thunderstorm rolled into Mishawaka with torrential rain, lightning and high winds. The hospital told the family that a life-flight helicopter could not travel in the existing conditions and that Sophia would have to be transferred by a standard ambulance. They warned the couple that the dangers of the air transport were very real and potentially life threatening. Nickole and Ryan looked at each other but felt they had no other choice. One way or the other, Sophia could potentially die. Her destiny, at least in part, lay in their hands. So they made the decision to transport the baby via ground ambulance.
Ryan remembers how difficult that moment was. “We said our goodbyes, and said prayers for Sophia. Nickole and I each took a turn holding her, smelling her hair, kissing her, and letting her know that we would be with her at any cost, either in this world or the next. The couple then raced back to their Plymouth home, where they threw together clothing and supplies to take with them. “A team of family members went down with us, Ryan said.
Instead of the normal two and a half hour drive, they made the trip in one and a half hours. “We were just coming up to 465 in Indianapolis when Sophia’s ambulance went racing past. Nickole recollected their arrival. “We arrived literally 5 minutes behind Sophia. We watched her being carted into the hospital while we frantically parked our car.”
It was the late morning hours of January 1st, when the two were given the newborn’s diagnosis. Sophia had a congenital heart condition called HLHS (Hypoplastic Left Heart Syndrome). The only family member familiar with the disease was Nancy. She had to explain to the family that this was a terminal diagnosis if surgery was not performed soon.
At 10 days old, Sophia had her first open heart surgery called the Norwood procedure. The weeks following the procedure were the toughest Nickole and Ryan ever imagined. Little Sophia endured weeks of therapy and countless issues that arose including a severe bout of Arrhythmia (a condition in which the heart beats with an irregular or abnormal rhythm). It was a long, long road for Sophia and her family.
A New Life Outside - Beyond Hospital Doors
Sophia finally left Riley on March 3, 2012. She had spent the first two months of her life behind hospital doors. Bringing Sophia home was in many ways a blessing for the couple, however it created an entire new host of problems. While in the hospital, the parents were instructed and trained to insert an NG tube down Sophia’s nose for feeding. The tube would run from her nasal cavity into her esophagus leading to her stomach. Sophia could not eat like a healthy baby because she would tire so quickly from breast feeding or suckling on the nipple of a bottle. “I cannot even begin to describe how terrible it was to do that to our baby girl,” Nickole said. To make matters worse, Sophia’s circulation was extremely poor, which led to amuch slower digestion process. Often times this caused the milk to sour and spoil in her stomach and she would go through episodes of extreme vomiting. Sometimes she would exasperate while vomiting and the vomit would get into her lungs and cause her to stop breathing. Ryan recalls those days vividly. “She would gasp for breath and turn different shades of blue and of course begin panicking.” Not only would Sophia go into extreme panic attacks, the parents did as well. “I refuse to even think about those times” Nickole says today.
Sophia had her first heart catheterization at 6 months old. Unfortunately the procedure did not go well. Because of the blood pressure medication she takes daily, combined with the anesthesia administered to her during the heart procedure, her blood pressure dropped dramatically and little Sophia flat-lined on the table. The surgeons had to use an AED on her and performed vigorous CPR on her. They frantically worked on the infant, but it took an unbearable 15 minutes for them to get a pulse. Eventually the medical team stabilized her.
At eight months Sophia had her second open heart surgery known as the Glenn Procedure, or the Hemi-Fontan. Ryan and Nickole experienced sleepless nights and more stress and anxiety than any parent should ever have to endure, but they were eventually able to go home. Ten months later Sophia had her third open heart surgery. Ryan commented on that period of time. “Although it was overwhelming for us, we were seeing some progress; with each step we saw small improvements in Sophia’s stats and her quality of life. It was very uplifting.”
After three surgeries, medical nightmares, hoping and praying; reality began to set in for the couple. Ryan shared his thoughts, “Up to this point we were so busy dealing with the situations that would arise, working with the doctors, implementing plans and following our regimented guidelines that we didn’t really have much time to consider Sophia’s future… just her survival. All of the three procedures have been completed and reality sets in. Our baby is not cured. There is nothing more the doctors or anyone else can do for her.” The surgeries have only prolonged Sophia’s life. “Those procedures allowed us to have a child, to get to know her, to love her and care for her; and to count the blessings that God has given us.” Ryan continued. “Eventually, Sophia’s heart will fail. The inevitable complications and stress to her heart will become too great and she will pass from this earth.” Her only option will be a heart transplant… and that will only happen if the timing is right; and of course if she has a suitable donor. Realistically, Sophia could have heart failure at any time, for any number of reasons.
Ryan shared the parent’s feelings, “Nickole and I have come to grips with the fact that we may indeed outlive our child. As parents, our hearts bear the heavy burden that all parents struggle with when they find they have a terminally ill child. Speaking for myself, sometimes the weight on my heart is so much that it seems unbearable. The thought of losing my precious little girl brings me to my knees. Yet, when I look at her smiling face, and hear her laughter with her brother and sisters, I can’t help but think that God has some kind of a bigger purpose in life for my child. It is my hope that as my daughter grows, she will be close to God and listen for his word and follow his guidance, and that she may speak his words as a child advocate for HLHS and other debilitating CHD’s.”
Every day I ask God to give me the strength to be the best Dad to Sophia that I can be and to bear this heart-heavy burden with the best possible outlook. Nickole and I cherish every waking moment that we have with our Sophia. We will certainly enjoy her and her beautiful personality as she grows and as she continues to fight the good fight… just like a heart warrior princess should do.”
Publisher’s Closing Thoughts
Many of the words above are those of Sophia’s father, Ryan Castro. This story touched our hearts when it was first brought to our attention. I had the privilege of meeting little Sophia for her photo session and instantly fell in love with the beautiful child that Sophia is both inside and out.
She captured my heart, and the hearts of everyone here at ZZZippy. Her bubbly personality is contagious. She will forever hold a very special place with me and those here that she interacted with. I personally want to thank Ryan and Nickole for sharing Sophia with me, my team and our readers. You have brought something special to us… forever.
Publisher- ZZZippy the Everything Magazine
Ryan Casto gently kisses baby Sophia minutes after her birth.Ryan told ZZZippy, “This day started as the happiest day of my life.”
Sophia’s mom. Nickole, embraces her newborn as she carefully studies her small miracle.
Less than one week after she was born, baby Sophia underwent her first open heart surgery (the Norwood procedure). This was just the beginning of a long, difficult road for both baby and parents.
“Our baby is not cured. There is nothing more the
doctors or anyone else can do for her”
The surgeries have only
prolonged Sophia’s life.
“Those procedures allowed us to have a child, to get to know her, to love her and care for her; and to count the blessings that God has given us.
Eventually, Sophia’s heart will fail.”
“I’ve tried to explain to Sophia how many wonderful people have helped her. Her response is always the same:
I’m a lucky girl.”