Alexis Christine Sparks was born eight weeks premature on June 30, 2006. About eight weeks before her birth we found out she was going to have some disabilities. Our second sonogram, done around 24 weeks, showed Alexis had no femur bones in her legs and Mom had extra amniotic fluid in the womb. We were then sent to a doctor who specialized in high risk pregnancies for more tests. After another sonogram was completed, it was confirmed that Alexis had no femur bones and the doctor gave us several possible diagnoses.
The most likely diagnosis was known as "femoral hypoplasia unusual facies syndrome." After being told all of this we were given the option of having an abortion, which was of course declined. We researched as much information about the syndrome as possible. We discovered there is no genetic link and no known cause for the syndrome. The reported cases so far range from 50 to 60 in the world and 20 to 30 in the United States. We learned the abnormalities caused by this syndrome varied, but most children had normal to above normal intelligence. Other concerns about the pregnancy were monitored because the doctors didn’t know a cause.
On June 29, 2006 labor started at 32 weeks gestation. We went to the hospital and were sent home by the doctor on duty because he didn’t think it was real labor. As labor continued all night, we went in early the next morning. At this point the labor was too far along to stop and Alexis was breached so it was decided to proceed with an emergency cesarian section. A doctor from the NICU (Neonatal Intensive Care Unit) came up before the delivery to talk to the family. We were asked if we wanted everything possible done to save Alexis if she were to have any problems. We of course told them to do everything possible and signed all of the necessary documents.
Alexis had to be intibated immediately after being born and was then taken directly to the NICU. We were able to see her about an hour later. She looked comfortable but was on a ventilator and had much bruising on her face due to the doctors having a difficult time intibating her. We found out she had a smaller than normal recessed jaw, which was the cause of several concerns we'd had during the pregnancy. Since Alexis had a smaller jaw she was not swallowing amniotic fluid which helps the lungs develop so her lungs were underdeveloped for her age as well.
When Alexis was about a week old she became extremely sick from a common intestinal infection which affects many preemies. After she recovered from it the doctors decided to try to extebate her but were unsuccessful. More tests were done and it appeared to be a problem with her airway. Her smaller and recessed jaw caused her airway to be smaller so it was very hard for her to breathe through her mouth and nose. The doctors at Wesley Medical Center decided to send her to a children’s hospital in Kansas City to have more tests done to determine the best option for her.
Kansas City’s Children’s Mercy Hospital had many specialists and the plan was to send her for the tests and consultations before she returned to Wichita. Genetics did tests and confirmed that she did most likely have femoral hypoplasia but it wasn’t something they could prove since there are no known genetic links or causes. The doctors determined that the best option for her small airway was to have a tracheostomy done. We were told it would most likely be temporary because her jaw would grow and it would be easier for her to breathe. On the same day of this surgery they also performed a surgery to correct a mal-rotation that Alexis had in her gut and digestive system. Alexis did well with both surgeries but faced complications a couple of days later when she got pneumonia.
Alexis spent four weeks in Kansas City before being transferred back to Wesley Medical Center in Wichita. After a week back in the NICU in Wesley they decided to transfer her to the PICU (Pediatric Intensive Care). In the PICU we would be able to be more involved with her care and would receive the necessary training to be able to care for her at home. Shortly after moving to the PICU Alexis became very sick with pneumonia again and almost didn’t make it. It was about 10 days before she started showing improvement. After she recovered from the pneumonia she had to have another surgery to put in a G-tube for her to receive feedings. Since she was on a ventilator and had a trach in she was not able to receive food by mouth and needed a more stable tube than the one in her nose.
Alexis recovered very well from the surgeries but it was still almost two months later before she could come home because she kept getting infections in her lungs. Alexis finally came home on November 20, 2006 but only stayed home five days before she had to go back into the hospital because of another bout of pneumonia. Alexis spent a week in the hospital before being sent home again. Through all of the infections and surgeries, Alexis fought. She kept the nurses on their toes all of the time and was a favorite of everyone who took care of her. After so much suffering, Lexi’s heart became weak and on December 11, 2006 she passed away. Alexis taught our family and the medical staff so much about being a fighter. She fought every infection thrown her way and never let it get her down.
The year 2006 supplied many difficulties for our family with many ups and downs but we wouldn’t trade our time with Alexis for anything. While we wish we’d had more time with her, we know she is with God and in a better place. We know that she no longer has to worry about tubes and infections. We know her legs aren’t a problem in Heaven as her wings fly her wherever she wants to go as one of God’s precious angels. Alexis touched everyone who met her although she only spent five months with us. Our hope and plan now is to share God’s love in order to help children and families who face many of these same difficulties.