I ride to give hope to Children’s Hospital Colorado patients like Maria.
This is my first year riding for the courage classic. I am very excited and grateful to fundraise and represent our heart warriors on the open road. This is Maria's story, provided by her parents. It has been translated from spanish to english.
MARIA, A HEART WARRIOR
Maria was born on January 27, 2022 at the Southwest Medical Center hospital in Liberal Kansas. Her parents were unaware of her heart condition, they never imagined what was hidden in her heart. The baby seemed to be fine, since she did not present any obvious symptoms. She was in her room together with her mother, and they only needed some routine tests to discharge them. However, her oxygen level came out below normal. The pediatrician also heard a murmur in Maria's heart. It was then that they decided to take her by air ambulance to a children's hospital, where she would have specialists and necessary equipment to be able to know Maria’s diagnosis. On January 29, Maria was taken to Children's Mercy Hospital, located in Kansas city MO, a 7 hour drive away. She was diagnosed with a congenital heart disease called transposition of the great vessels, pulmonary stenosis and ventricular septal defect, fortunately she was compensated for the moment and she only required cardiac balloon catheterization as a start to treatment. She recovered quickly and after ten days she was discharged, however knowing Maria's condition, in the following months she would need open heart surgery to correct these three heart defects. She returned to normal life together with her parents and her older brother in her hometown, Liberal Kansas.
During the following months Maria lived like any other baby, of course with appointments every month with her cardiologist and pediatrician, checking that everything was stable. Her development was going well. She was exclusively breastfeeding, at 5 months she started breastfeeding and taking purees. She loved sweet potatoes! However she had trouble gaining weight, that is why at 6 months old, her cardiologist suggested placing a nasogastric tube. From that point she began to lose interest in eating. At her 7-month checkup, her pediatrician recommended a second opinion. At the next appointment the doctor suggested that she be sent to Children's Hospital Colorado to be evaluated by the entire cardiac team. They would soon give an answer which said that Maria was a candidate for surgery and would go on October 4, 2022.
On September 29, just two days after María turned 8 months old, María together with her parents undertook the 6-hour journey to reach their destination, Aurora Colorado. Her parents were filled with so many thoughts, knowing soon the heart would be corrected, also
full of fear for what an open heart surgery entailed. They left their other son under the
care of her grandmothers. The days passed and they prepared Maria for surgery by doing preoperative studies. The type of surgery would be an arterial Jatene Switch, with an effectiveness of 97%. On October 4, Maria together with her parents arrived at 7 in the morning, ready to enter the operating room. Her parents, with a lot of nerves, said goodbye to her, giving her a kiss and a hug, asking God that everything would be fine. The hours passed and the surgery was going successfully, the assistant surgeon Dr, Jaggers was coming out to tell her parents how well everything was going during the surgery. Finally around 2 in the afternoon he came out to tell them that the surgery had been a success and that Maria was going to the cardiac intensive care unit, where they could go look at her. At 4 in the afternoon, they finally go in to see their daughter. It was somewhat impressive to see her little daughter with so much device and cable monitoring also with an artificial ventilator, but her parents were happy to know that everything had gone well.
As the hours passed, the worst was yet to come. That night at 4 in the morning of October 5,
María’s heart stopped, the alarms began to sound and everyone ran to try to save her. The nurse who was taking care of Maria that night gave her first aid
gave CPR for several seconds, then they used a defibrillator to shock. Her parents full of fear and despair watching the whole scene, a nurse took them out of the room to calm down a bit. Luckily they established Maria and she was admitted to the operating room emergency to be connected to a machine called ECMO, which is responsible for performing the functions of the heart and lungs. Days later, the heart of Mary recovered a bit. Her right ventricle had acceptable function, but unfortunately the left ventricle did not, so the doctors decided to remove Maria
on ECMO and put her on another machine, called a VAD (ventricular assist device)
only helping her left ventricle, to give Maria's heart more time. The days passed and Maria's left ventricle did not show many changes, Maria showed problems with her breathing and she was in a critical state again. She had a fever, which the doctors thought could be an infection, and gave her.antibiotics. Several days passed but her fever did not go away, it was then that the doctors thought that Maria's heart was still very weak and her left ventricle did not have enough strength to pump blood. She was exerting herself too much, and as a consequence she was getting high fevers. It was in that moment when they told her parents that the only option for Maria to survive was reconnect her to a long-term VAD (Ventricular Assist Device) while
María is waiting for a heart transplant. It was already November 11, more than a month had passed after her surgery and she went back to the operating room to be connected to the device, this time it was of a device called the Berlin Heart , which despite having been around for a few years they had created a new and improved version, much smaller in size than the old version. Maria would be the first girl in the United States to use it, promising that her life would be as normal as possible while waiting for a new heart. This time she was going well, Maria began to recover little by little and began to be the smiling and happy baby that she had always been. Within days she managed to get out of intensive care and go up to the ninth floor, where she has a big room full of toys, where her parents go every day to be with her,
Also from time to time her brother comes, her grandparents, uncles and all her family. She has nurses who take very good care of her day and night, she has therapists who help with her physical and emotional development. She is happy in her little world. Maria and her parents smile at life as she waits for a new heart.