Editor's note: Riley O'Brien was born with a seeming death sentence, diagnosed with a rare heart defect known as heterotaxy syndrome and congenital heart disease. Doctors gave him a 50/50 chance of living to his first birthday; he is now four. Read his family's amazing journey here, and how you can help. –- Judy
Image: Carol O'Brien
Riley O'Brien has fought for life since before he was born. He is a warrior. When his mom Carol went for her prenatal checkup at 22 weeks, she was informed that the baby boy she was carrying was diagnosed with heterotaxy syndrome and congenital heart disease. The doctors said he had a 50 percent chance of living past age 1. At age 4, Riley continues to beat the odds.
After 3 years, 3 months, 3 weeks, and 3 days of waiting for 3 organs, Riley received a bilateral lung and heart transplant on March 5, 2013. Dr. Spray and the medical miracle team at the Children's Hospital of Philadelphia conducted this very rare transplant surgery.
This past week has been a very dark and scary week for the O'Brien family, as Riley has fought for his life like never before. This past Monday, Riley endured his 27th cardiac catheterization, a procedure used to diagnose and treat certain heart conditions. Dr. Dori, who conducted the cath, did say after the procedure that he "usually does not see heart function this good after one week." Yet the cath also helped determine that Riley has parainfluenza in his lungs and that half of his left diaphragm was paralyzed. Doctors couldn't say if the paralysis would be permanent or not. These two diagnoses made breathing more difficult for Riley. Many of us may catch parainfluenza, but we can cough it out. This little boy could not.
In addition, it was determined that the blood clot in his left clavicle area could not be surgically removed. Fortunately, the vein that the clot was located in did not run to his brain. This was good news for the family. "We do not have to be concerned about a brain aneurysm," said Carol. However, the clot was located in a vein that connected to his lungs. With no option of surgery, the doctors had no choice but to treat the clot with blood thinner medications. At this time, they expect to do this for 6 months.
Early Tuesday morning, Riley hit a brick wall and slid downward. His temperature climbed to 104.8 degrees, his heart rate increased to 195 beats per minute, and his blood pressure soared. Doctors uttered the words that the O'Brien's never wanted to hear: "This is very bad. Riley is hanging on." Seeing Riley so pale, shivering, tears rolling down his face, his lower lip quivering and his eyes begging "Help me!", Carol O'Brien was flooded with many emotions. She could not speak.
The doctors ordered Carol to bed rest. All she could think was, "You want me to go to sleep? What if my child dies before I wake up? The doctors assured her that if she was needed, a nurse would knock on her door. Yet Carol wondered, "How do I do this? How do I go to sleep? If you knock on my door, that means my baby Riley is going to die. I can't go to sleep, yet."
Sleeping is not easy at the Children's Hospital of Philadelphia, for there are only 5 sleep rooms used by 28 parents. The nurses cleared a room for Carol to sleep in for the day and night. Eventually, the O'Briens went to sleep with the help of some medication. As he has done every night, Darren O'Brien rested in a chair by Riley's bed holding his little hand. Carol set her alarm to check on Riley every four hours. She was too afraid that the staff might not get to her in time. She went to sleep thinking, "I need to go back. I cannot be here. I should be with my baby. Am I a terrible mother by trying to sleep?"
Late afternoon on Tuesday, Riley's heart rate, temperature, blood pressure all started to improve. Everyone could breathe, including Riley, without distress. The doctor's next goal was to get Riley off the ventilator.
Wednesday 12:20 PM: SUCCESS! Riley went off the ventilator and into a breathing mask. At first, he was shocked and relieved for less then 30 seconds. Then, as the large mask was put onto his little nose, little tears began to roll down his face. His first mask was too large for his face. Imagine hanging your head out the window of your car while going down the highway at 70 mph. That is what this mask felt like to Riley. The reason Riley was stuck with this mask for a while was because the hospital did not have an available machine with a smaller mask. After some urgent from Carol, though, they found a smaller mask, and Riley calmed down. "We were so happy that he was off the ventilator," said Darren.
This lasted for a day and half. Then on Thursday morning, Riley's temperature, heartbeat and blood pressure started creeping up again. "Here we go again..." said Carol O'Brien. By the afternoon, Riley's temperature was under control, heart rate in the 150's and blood pressure no longer climbing. Doctors were able to get a new arterial line in. "Riley no longer has to suffer through his wrists being sliced open, at least for now," said Carol.
The reprieve was short. Early Friday morning, new problems. The feeding tube kept moving back into the stomach. Riley was in pain. He was getting weaker. The doctors decided to put Riley back on the ventilator, since this would make breathing easier for him. They decided to move the feeding tube from his stomach to his small intestine to end the acid reflux and the possibility of the aspiration problem.
Carol O'Brien searched out a bed to try and sleep, but there was no sleep that night. Darren sat in the chair next to his son's bed and held his hand. They all nodded off. Tomorrow will be a new day. The process to get Riley back off the ventilator will begin again. This is the battle for Riley O'Brien's life. He is a warrior who continues to beat the odds.
The family has another storm on the horizon. Their 700-square-foot home has leaky windows, and possibly mold in the walls. Riley cannot go back to this house, for the mold will shred his new lungs. The family cannot afford to buy a new home. They owe $150,000 on their mortgage. Daren O'Brien works full time for a school system in Somerdale, New Jersey, Carol O'Brien must be home with Riley full time.
A crowd-funding program to help Riley have a safe and healthy home has been set up.Visit http://www.helpriley.com. The O'Briens are not looking for a handout but for a hand up. "I just want a safe home for my son that will not hurt him," she said. "I wish I could solve this myself."
You can send get well cards to:
3401 Civic Center Blvd.
6th floor, South Tower
Philadelphia, PA 19104
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