My name is Chris Burleigh. I am a Deputy Sheriff and my wife Megan was an EMT with Acadian Ambulance Service.
In October of 2009, Megan and I got the news that she was pregnant with twins. This news was both exciting and stressful. The following months would include regular visits to for diagnostic ultrasounds. All the news from the ultrasounds was that all was going well.
On June 24, 2010, we went to the hospital for the scheduled c-section. Lilly was the first to be born. To our dismay, Lilly was born with three clefts in her lip and a cleft palate. Her left eye was large and dark. She had a couple of small lesions on her scalp. The Doctors in did not tell us anything.
Within two hours I was told Lilly would be rushed by ambulance to Houston. I had to leave Megan and Lillyâ€™s sister Camryn at the hospital and go to to be with Lilly. On Lillyâ€™s second day of life, I was summoned to a room to meet with genetics personnel. At the meeting they told me they believed Lilly had Trisomy 13. They told me if she had this condition she would not live long. I was crushed...I went to my car sobbed for what must have been hours. We had to wait the longest four days of our lives to find out her genetic screen was normal, no Trisomy. At three days old, they informed me her left eye was not salvageable and had to be removed that afternoon.
Lilly would be in the NICU for a total of 27 days. During that time she would endure four surgical procedures. She had three eye procedures, and a correction of a mal-rotation of her intestines along with an appendectomy.
Once released, she began a long list of procedures during the first year of her life. These included: placement and removal of two Latham devices
***The Latham shown above was pinned into her mouth, we had to slowly tighten the screw to gradually reshape her mouth structure***, three lip corrections, one palate construction, two sets of ear tubes. During that twelve month period we made over fifty trips to for appointments and procedures. We purchased a cranio helmet and a prosthetic eye at great expense.
In her second year of life, Lilly endured the following procedures: two lip corrections, placement of a tissue expander in her cheek, two procedures to create eyelids for her, and removal of her tonsils. Her surgeries changed the physical shape of her ocular socket and we had to buy another prosthetic eye.
Lilly has made incredible progress. She is a bright and beautiful child, who has taught Mommy and Daddy alot about life and what is important. She has a beautiful spirit and is always the first to offer to help or share with her sisters.
She takes her procedures in stride and keeps upbeat about it all. She rarely complains about the pain.
Lilly will continue to receive Speech and Vision therapies. She has numerous trips for orthodontic care in her future. She will have a few more lip corrections and an unknown amount of cosmetic procedures ahead. At around age seven, she will have a surgery that takes a pieces of bone from her hip and uses them to fill the gaps in her gums from the clefts.
Lillyâ€™s treatments have left us with a great financial burden. I would like to thank all that have and will help Lilly and our family. Thank you to all that have prayed for her, for we have truly seen the power of prayer. A special thank you to my family and co-workers for their help and support.
Thank you so much, Chris, Megan, Madelyn, Lillyn, and Camryn Burleigh
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