LilyLily Eve was our fourth child. We found out at our 20 week ultrasound that Lily had a very difficult combination of defects: a two-vessel umbilical cord, HLHS, and a type of hydrocephalus known as Dandy-Walker Syndrome. It was determined by amniocentesis that Lily had a chromosome abnormality (a balanced translocation of the 10th and 12th chromosomes). Doctors thought at the time that she was not missing any genetic information, so she would still be a candidate for heart surgeries.
We prepared ourselves, our children, and our extended family and friends for Lily's birth. We asked everyone to pray with us that Lily might not need to have any surgery for her hydrocephalus (heart surgery and brain surgery were more than we though we could handle) and that she would live long enough that her brother and sisters could see her and hold her.
Lily was born via c-section on July 15, 2007 at Indiana University Medical Center, and was quickly transported next door to the NICU at Riley Hospital for Children. Lily stayed in the NICU until she had the Norwood procedure, 15 days later, performed by Dr. Mark Turrentine. She was able to bottle-feed and breathed on her own until surgery. It was evident from the beginning that Lily had a vibrant personality and was eager to be a part of our family.
Lily came home for the first time on September 19, 2007. Our whole family was thrilled to get to know Lily outside of the hospital. She loved the attention that was showered on her by her siblings. With two heart children (Lily's sister Sariah has an artificial mitral valve), we did spend a lot of time at the doctors' offices. Lily shared her older sister's opinion that any trip to the doctor or hospital was a special occasion, and was always her most charming self! We had been told that there was a good possibility that she would be blind and deaf, but her own behavior and official follow-up tests proved otherwise. Lily could hear and see perfectly, and her hydrocephalus was so mild that her neurosurgeon predicted she would never need surgery for it.
We had another long hospitalization after the New Year, when the pressures in Lily's lungs began to increase. While she was due to have the Hemi-Fontan, her high lung pressures prevented that surgery. Instead, Dr. Turrentine placed another shunt (a modified Norwood procedure) to try to lessen that lung pressure and prepare Lily for the Hemi Fontan. Lily returned home in February of 2008, and continued to do better than everyone expected. We worked on motor development with physical and occupational therapists. Lily had a feeding tube, but was able to learn to bottle-feed and eat baby foods during this time. We enjoyed lots of fun times together as a family, including a family vacation to the East Coast.
When summer came, Lily's condition began to deteriorate. She spent most of June and July in the hospital. During that time, we found that more sophisticated chromosome testing was available. New tests showed that Lily was missing a lot of genetic information and that, in addition to her heart defect, she had a rare metabolic disease which was affecting her growth and muscle development. Dietary changes provided her with some comfort. We celebrated Lily's first birthday with much joy at Riley Hospital's Heart Center, where Lily was staying. The next day, Lily went to the cath lab. It showed that, while Lily's heart was doing well, she had severe pulmonary hypertension, probably because of her chromosome abnormality. Because of the high pressures in her lungs, Lily would not be able to survive further heart surgeries.
We brought Lily home from the hospital a few days later. Thanks to the continued support of our pediatrician, cardiologists, and the Hospice team, we were able to enjoy taking care of Lily at home for over a month. Our family has many precious memories of that time. Lily was able to play, go on long walks outside in her stroller, drink from bottles, and learned to love treats like popcorn and ice cream! Lily died peacefully in my arms on August 21, 2008.
Our family is very grateful to the surgeons, doctors, nurses, therapists, and staff at Riley Hospital who cared so lovingly and hopefully for Lily during her lifetime, as well as the therapists, neighbors, friends, and family who helped us care for Lily at home. We are grateful that we could experience so many miracles during Lily's short life, and look forward to seeing her well and whole someday. There was a time before Lily's birth that we prayed for just one day with our baby....we were blessed with more than 400.
Story by Lily's mom, Ruth - Indiana