Our beautiful baby girl, Isabella Lin Ramirez, was born on May 19, 2009 at 1:51 pm. She weighed in at 5 lbs, 15 oz, and 18 inches long. Isabella was born at St. Luke’s Hospital in San Antonio via an unplanned Caesarean delivery. Like all proud parents, we fell in love instantly with our beautiful baby. We were sure she was perfect in every way. Our joy, however, was short-lived and before long, we received news that would change our lives forever.
About 16 hours after delivery, Isabella showed sustained rapid breathing and an inability to regulate her body temperature. Even more concerning was Isabella’s heart, which was exhibiting possible under-development of necessary pathways to circulate blood throughout her body. Because of her presenting condition, a decision was made to have her transferred to the NICU at Methodist Children’s Hospital. At Methodist Hospital, the doctors determined that Isabella was suffering from high levels of ammonia and lactic acid, which would result in death if left untreated. A metabolic geneticist collaborated with the neonatologists caring for Isabella and prescribed Ammonul, a rare drug that helped extend her life.
Isabella remained at Methodist Children’s Hospital for the next six weeks under constant monitoring and treatment. She continued to struggle with taking nutrition orally and had difficulty tolerating normal amounts of baby formula/breast milk. During this time, we made the decision to have a gastric feeding tube inserted into her stomach that would ensure proper nutrition and guarantee us an access point to administer necessary medications. Additionally, she had a central intravenous line placed that we used to administer Total Parental Nutrition (TPN), IV fluids (for hydration), and blood transfusions. This central line also gave us the ability to obtain blood for continued monitoring of Isabella’s ammonia and lactic acid levels.
During Isabella’s life, she received speech, physical, and occupational therapy along with palliative care to assist with her physical progression and comfort. Because of her low muscle tone caused by lactic acidosis, Isabella was never able to eat by mouth, turn over or crawl. She succeeded in her efforts to hold her neck up independently, grab and hold onto toys (rings were her favorite), and sit with assistance for brief periods. She tended to sleep long hours due to high levels of ammonia, but she was very alert and highly active when she was awake. She loved to be held and enjoyed looking at and observing people. Her favorite activities included rocking in her swing, babbling with Daddy, and bouncing with Mommy. Amazingly, she would accomplish all of these with her fingers in her mouth at all times!
Isabella looked and acted in several ways like a normal, healthy baby girl. Underneath the surface, however, her heart, liver and other organs were severely affected by what doctors suspected was an undiagnosed mitochondrial disorder.
Despite these health obstacles, Isabella thrived in life and lived with love and happiness. Her beautiful smile and wonderful personality always shined brightly. To everyone who knew Isabella, it was clear that her spirit was strong and unwavering. Through love, hope, prayer, and science, Isabella lived to see her first birthday. It was so wonderful to have all her family and friends there to share her day of celebration.
On September 25, 2010, after providing us with all the love and happiness that she could give, Isabella was called by the Lord to return home. Our beautiful daughter passed away in peace at Texas Children’s Hospital in Houston surrounded by the love of her family. For 16 months, we were truly blessed to have Isabella in our lives. While some days were painful and challenging, so many others brought love and happiness filled with everlasting memories.
Because skin, muscle and liver biopsies generated inconclusive results in diagnosing what mitochondrial disorder affected our daughter, we are setting up this foundation in remembrance of our angel in heaven and to honor what would have been Isabella’s 3rd birthday. Although her time with us was brief, her memory will live on through the support of a wonderful cause that helps medical professionals find important answers and further treatment options for children and families affected by mitochondrial disorders.
We thank you for your love and support,
The Ramirez Family