Lilly Miracle was born with hypoplastic left heart syndrome. Hypoplastic left heart syndrome is a complex and rare heart defect present at birth.
In hypoplastic left heart syndrome, the left side of the heart is critically underdeveloped and the left side of the heart can’t effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body.
Lilly, 15, of Wallins Creek, had her first open heart surgery, the Norwood procedure, when she was 2 days old. A shunt was placed inside her chest. The operation was to reroute everything until the pressure in her heart could be stabilized and get her to a second surgery said her mother, Pamela Lankford.
“The second open heart surgery, performed at 8 1/2 months, was called the hemi-Fontan,” said Lankford. “It was a reconstruction process getting her ready for the third surgery called the Fontan completion, which she had when she was 18 months old.”
“I was sent to the University of Kentucky while I was pregnant with Lilly because I was having a hard time with the pregnancy, but I had no idea anything was wrong with Lilly’s heart,” said Lankford. “I had had several normal ultra-sounds and nothing had been picked up about her heart. At UK they performed a level 2 ultra-sound and found that Lilly didn’t have four chambers in her heart — she only had two.”
Lankford said doctors created what is called a lateral tunnel for Lilly. She said in theory it’s supposed to grow with the child.
“Lilly, this past October, went through two heart caths and a vascular,” said Lankford. The doctors were hoping to create a special stint in this tunnel to open it up for her. The tunnel is supposed to measure 18 to 20 millimeters. Lilly’s, after surgery, is measuring only 8 to 10 millimeters now. So, basically, her heart is trying to pump blood through an area that is too small to push the blood through.”
Lankford said doctors told her in November there is just no way they can keep this tunnel stretched out.
“They went in and did a stint, but it was traumatic to Lilly and they had recoiling with it,” said Lankford. “Her doctors decided to let her body rest and bring her back this summer and redo everything. So, the surgery she had done at 18 months will have to be redone in August.”
With an immune disorder, Lilly is weak and with all the hardware she has in her body, she has a hard time fighting off infections of any kind.
“If these infections got near her hardware she will end up on a transplant list because there wouldn’t be anything more they could do for her,” said Lankford. “If at any time her heart just tires out it’s a real possibility she will be placed on a transplant list. Transplant is the last option, and doctors are trying everything they can before that decision is made. She’s a fighter and she’s done really well so far.”
Having to be home schooled, Lilly said that overall she feels pretty good, but there are days when she doesn’t feel like doing anything.
“I’m doing great for what I have,” said Lilly. “A lot of the kids I knew growing up that have somewhat the same thing I have have passed away. I’m still here, and I give that credit to the Lord and my mom.”
A junior in high school, Lilly loves to help her mother cook. She said she enjoys sewing and doing crafts with her nana, Rita Lankford. She loves to read, sing in church and draw.
A roadblock will be held Aug. 4 on the Walmart bridge from 7 a.m. until 6 p.m. Lilly and her mother will leave for Delaware on Aug. 5, and because Lilly can only travel for a certain amount of hours per day, the trip will have to be broken up into several days. She is set for surgery on Aug. 7.
If anyone would like to help in any way, you may contact Lilly’s mother at 606-621-0603 or email at firstname.lastname@example.org. You may also visit Lilly’s Facebook page at Lilly Lankford and leave a private message. You may also reach them by mail at P.O. Box 243, Wallins Creek, Ky. 40873.
Lilly’s father, Robert Miracle, lives in Corbin. She has two sisters, Alexa, 18, Emily, 9, and one brother, Gabriel, 6.
“A lot of people have told us they are praying and have sent prayer cloths for Lilly. We really appreciate that and have each and every one of them. We ask that prayers continue to be made on Lilly’s behalf. If anyone is going through the same thing, please call and, hopefully, we can return the love and help someone else in some way.”
Nola Sizemore may be reached at 606-573-4510 or on Twitter @Nola_hde