In her eight month of pregnancy, Valeria Petracchi made a visit to her doctor for an additional 3D ultrasound so she could ‘see her baby one more time before delivery.’ Both Valeria and her husband Martin Padilla, residents of Lake Forest, Illinois, were over the moon with joy at the near arrival of their first born – a son. But, the celebratory visit took a drastic turn when the ultrasound revealed that their son had a rare fatal heart condition called, Hypoplastic Left Heart Syndrome. Their son had only one ‘fully functioning ventricle.’ The left side of his heart was not fully developed which meant that the right ventricle would have to do double duty in order for the lungs and body to get blood. In the long run, the right ventricle would not be able to sustain the pace and inevitably shut down.1
Valeria and Martin were presented with two options by their doctors.
Valeria could give birth to her child, and provide him with palliative care at home as he takes the natural course to death.
Hop on an emotional roller coaster ride and be prepared for an immense financial burden because their baby would need three stages of open heart surgeries and eventually a transplant.
Valeria emphatically says: "My husband and I chose LIFE for our son!"
Two weeks before delivery, Valeria and Martin moved to Boston, Massachusetts so their son could have the best care for his first open heart surgery at Boston Children’s Hospital: ranked #1 (2012-2013) by U.S. News and World Report for Pediatric Cardiology and Heart Surgery. Under the care of world renowned doctors: Cardiologist Dr. Wayne Tworetzky and Cardiovascular Surgeon, Dr. Pedro del Nido, their son, named Joaquin, was well prepared for his battle.
At just one week old, Joaquin had his first open heart surgery remaining critically ill in the ICU for the first four months of his life as there were numerous complications. Joaquin suffered three heart arrests and as a result was put on ECMO (Extracorporeal Membrane Oxygenation) for four days to help his heart and lungs rest and get better. "ECMO is a procedure during which blood oxygenation and cardiac function are performed by a mechanical pump outside the body." 2
Complicating matters, Joaquin's femoral artery had broken during a procedure and had to be repaired at the high risk of losing his right leg. Thankfully, the repair went smoothly.
As if Joaquin hadn't endured enough in his first four months of life, he acquired some infections: Clostridium difficile, 'C-Diff' - "a bacterium that causes diarrhea and more serious intestinal conditions such as colitis," 3 bloody stools and a virus with a very high fever.
Joaquin's parents have been in 'survival mode' ever since Joaquin was born.
Valeria says: "Coming home was very stressful, he was medically fragile and was at risk of losing his life every day. We couldn't expose him to other kids, had to weigh him every day, give him heart meds and hook him to a heart monitor overnight."
She continues: "We had to come to terms with the idea that he might not ever be able to play sports at school or with his friends and that his heart might fail at any time."
The after-effects of the financial and emotional ramifications of choosing this road for Joaquin, at times, withered their spirits and accentuated their worries. Joaquin had maxed out of his health insurance after being in the hospital for the first two months. His hospital bill was already $1.6 million dollars.
Despite these grave financial matters which were pre-warned, both Martin and Valeria fought real hard to place their focus on their fight for their son's life, their faith and belief in miracles over statistics and financials.
Certainly, the question of 'Why did this happen?' did come across their minds. While no concrete answers were delivered, Joaquin's circumstances have taught both Valeria and Martin to live life more fully and be thankful for every day, every moment and every breath of Joaquin's life with them.
Valeria says: "We have met so many wonderful people throughout this journey!"
The second part of Joaquin's journey.
After struggling with feeding, sleeping and may varied therapy sessions, Joaquin was ready for this second open-heart surgery at 9 months old.
This surgery would help send oxygenated blood to his upper body helping him function more normally. However, his lower body (liver, kidneys, legs) would still be receiving mixed blood so he wouldn't be able to run fast, jump, ride a tricycle and his resistance would be very low until his third surgery.
Valeria says: "Again, we had to deal with the unknown: all the risks of surgery, the slow recovery, and the assessments to see how his physical and mental skills were doing."
Faith continued to be their anchor.
Valeria continues: "We put ourselves completely in the hands of God. Not all the money, knowledge or best care possible in the world could guarantee that our son, Joaquin, was going to be doing well."
Joaquin championed his second surgery with no serious complications and spent only six weeks at the hospital. Despite his reputation at the hospital for being a fragile and sick baby, Joaquin's recovery was a sign that this little tyke was putting up a good fight for his right to live.
Valeria and Martin returned to Chicago and slowly but surely Joaquin got stronger and bigger.
"After a couple of months, he was thriving," she says.
Valeria and Martin eventually tried for another baby, and little Felipe was born, becoming a good friend and companion to his older brother, Joaquin.
She continues: "We had some normalcy in our lives."
The word, 'normal', however, is relative to circumstances. Families like Valeria and Martin Padilla create a 'new normal'.
Joaquin's daily routine.
Joaquin takes meds morning and night, has therapy sessions, doctor's appointments,echocardiograms and labs. He does not go to school.
Valeria says: "If he gets a fever, we need to call his local Chicago cardiologist right away, take his saturations and if they are low, run to the ER. My husband and I look for cues like if he's breathing hard or turning blue or doesn't feel like himself. We kept him away from school for now because his heart wasn't strong enough to fight a fever and for the risk of getting Respiratory syncytial virus. ('RSV') Joaquin does take RSV shots during the winter."
Valeria continues: "Although doctors say he won’t remember his hospitalizations, Joaquin never sleeps through the night. He wakes up many times screaming and does not want to let himself relax to go to sleep. I don’t blame him as the first years of his life were spent on a bed and people coming to examine him, poke him and with a lot of pain!"
Joaquin's third leg of the journey.
On September 17th, 2012, Joaquin had this third open heart surgery.
Valeria says: "Joaquin had been doing so well that it was really hard for us to think about bringing him for this third open heart surgery. I refused the idea of handing him to the surgeon, seeing him suffer and accepting the risks involved."
She continues: "Of course, it was hard for Joaquin as well because he couldn't understand what was wrong with his heart and why we would put him in such a painful situation."
Joaquin championed the surgery once again and left the hospital ten days later. While currently recovering, the experience was very hard and traumatizing on him.
Valeria says: "Joaquin screams at everyone that comes close to him on the street, in the elevator and on the sidewalk. He's sleeping terribly and is afraid to leave our side or be left alone. I don't blame him. I don't think I could be as strong as he is. I admire him for enduring all of this pain at such an early age!"
She adds: "All of these surgeries are a palliative solution because Joaquin's heart can never be fixed. There are two downsides to this last surgery. One is that the pressure at which the blood flows through the veins is very high, twice as normal, and the body cannot resist it for a long time. After a couple of years, the organs start failing."
"Another complication has to do with how well the heart endures all this work overload," she explains. "No one knows what the future holds for these kids, but doctors say that just one ventricle cannot do all the work of the heart, and that they'll need a transplant down the road, how soon depends on each case and each heart. There are no magic answers."
Both Valeria and Martin Padilla take one day at a time.
Valeria says: "They've learned to cherish the little things, to value life itself, to handle the unknown, to seek for God and to give thanks even when it hurts."
While Joaquin has been through more obstacles than the majority of children his age, he also lives life to the fullest. He loves his toy cars, animals (requiring lots of visits to the farm) and learning new words and phrases. He may not be playing sports, just yet or ever, but he can sing and has now taken up dancing. And every day, little Joaquin teaches his family a lesson of: Courage, life, hope, miracles and love.
For a little boy with half a heart, he's certainly given his family a whole lotta love and a meaningful 'new normal.'
The Padillas are in the process of setting up a non-profit but in the meantime are receiving donations for Joaquin's life-long medical care and procedures.
Mailed in donations can be sent to:
50 E Scranton Ave
Lake Bluff, Illinois
or via Paypal: email@example.com