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Morning Sun
  • Patrick's People - Miracle baby

  • The birth of a baby is a miracle, but sometimes the miracle needs a little help from doctors.

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  • The birth of a baby is a miracle, but sometimes the miracle needs a little help from doctors.
    That’s the case with Delylah Adele Harris, daughter of Leslie and B.J. Harris, born Sept. 13 at Via Christi Hospital.
    “I had a healthy pregnancy and we didn’t know anything was wrong,” Mrs. Harris said. “I went into labor at 37 weeks and had an emergency C-section. The doctor heard a serious heart murmur.”
    Little Lylah spent the first eight days of her life at Children’s Mercy Hospital. Tests revealed that the baby has a heart defect called tetraology of Fallot, but that wasn’t all. She also has DiGeorge Syndrome.
    “The Q section of her 22nd chromosome is missing,” Mrs. Harris said. “Part of it is the heart defect. There are other things that can be associated with it, and some of them we know she doesn’t have, like facial deformities and a cleft palate..”
    Lylah has had more testing to determine if she has other, less obvious, problems, such as a weakened immune system, kidney abnormalities or malfunctioning parathyroid glands.
    “So far we’ve gotten negative blood work back from things she doesn’t have,” Mrs. Harris said.
    Lylah had to be taken back to Children’s Mercy Hospital on Oct. 14 and spent another four days there before returning home.
    “She’s now on constant oxygen and doing better,” Mrs. Harris said. “She’s behaving more like a normal baby now. We’re fortifying her milk so she can gain some weight. The doctors want her to get up to 15 pounds before they perform open heart surgery. The goal is to wait until she’s four months old.”
    However, the surgery  could be performed earlier if it becomes absolutely necessary.
    “Right now Lylah’s heart is only the size of a large grape and the risk of complications are greater,” the baby’s mother said. “Also, if they put in a new pulmonary valve now, they’ll have to replace it when she’s around 3 or 4. If they do it at 15 pounds, she may not have to have a replacement until she’s 10. She’ll have to have the valve replaced throughout her life.”
    In addition to seeing her heart specialist, Lylah will also need regular visits to specialists in immunology, endocrinology, genetics and hearing/speech in the Kansas City area.
    All of this adds up to significant travel expenses, plus out-of-pocket medical costs, for the baby’s parents.  
    That’s where another miracle comes in, the miracle of caring friends. A benefit, “Love for Lylah,” is scheduled at 7 p.m. Nov. 3 at McCarthy’s Pub.
    “B.J. Harris is a good friend of mine, we’re both from Girard and we have ties,” said Bryan Hanson, owner of McCarthy’s. “I knew they could use some extra money.”
    Page 2 of 2 - He contacted J.J. Karlinger, Pittsburg Police officer and lead singer in the band Clean Slate.
    “I was just sitting at home, and we had just found out about Lylah,” Karlinger said. “We were busting our brains to think what we could to, and then I got a message on Facebook from Bryan. He said they were going to  have a fundraiser and did I think my band would want to help. It hit me like a lightning bolt right on top of my head.”
    Clean Slate and Cousin Eddie will be featured bands, and there will also be a silent auction. The free-will cover charge will go to Lylah, and Hanson said he was donating 25 percent of all sales that night.
    “The doors will open at 5 p.m. and the silent auction will start then,” Hanson said. “Bids will end around 9:30 p.m.”
    Auction items will include a playset from Backyard Discoveries, four NBA tickets to the Oklahoma City Thunder, hotel stays, gift certificates and crafts.
    “Some of my friends do direct sales and are donating things,” Mrs. Harris said. “I have a friend who knits hats and she’s bringing some up from Arkansas. My friend Amy Wilderman at Children’s Mercy Hospital, whom I hadn’t seen in probably 15 years, is doing T-shirts.”
    She is deeply appreciative of all this, and added that McCarthy’s Pub has always had a special place in her heart.
    “B.J. and I had our first kiss at McCarthy’s 8 1/2 years ago on St. Patrick’s Day,” she said.
    Her husband, director of the Crawford County Convention and Visitors Bureau,   is also overwhelmed.
    “It’s just pretty neat to think these guys were so gracious to do this,” Harris said. “It’s not every day a business owner will come to you and say he’ll give you 25 percent of his profits for the day and then take a leadership role in planning all this. We’re sad we’ve got this situation, but glad to have these friends. This will make a big difference.”
    Other sponsors include Eagle Beverage and Pittsburg State University.
    Donations for Lylah may also be mailed to Post Office Box 418, Pittsburg, Kan., or dropped off at the First Federal Bank. Online donations may be made at www.wepay.com/donations/loveforlylah.
     

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