If you ask 4-year-old Dylan why his baby sister Madalin is in the hospital, he’ll tell you, "She has a broken heart.”
If you ask Madalin’s grandmother, Vicky Norris, why she cried the first time she held the tiny baby this week, she’ll say she fears many hearts will break if Madalin doesn’t survive an often-fatal congenital heart defect.
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Norris lost her adult son several years ago, and she prays her daughter Jaymie Smith will never know that overwhelming grief.
"It’s been a scary, scary thing,” she said. "I can’t imagine her losing her child like I did mine.”
Smith said she clings to hope and trust in the doctors treating her newborn at The Children’s Hospital at OU Medical Center.
Madalin Leigh Smith was born Oct. 8 with hypoplastic left heart syndrome. The left side of her heart is underdeveloped and unable to pump blood to her body.
A few days after birth, Madalin had a surgery to help her right ventricle to pump blood to both the lungs and body.
She needs several more procedures and could require a heart transplant when she’s older.
Because of surgical advances, about 60 percent of babies born with the defect will survive to age 5, and most of them will live into adulthood, pediatric cardiologist Dr. Ed Overholt said.
"Babies 15 to 20 years ago with this problem didn’t survive,” Overholt said. "They were very much an exception to the rule. There’s a lot more hope now.”
Little time alone
For Smith, reassurance is mixed with the exhaustion and worry. The family lives in Elk City, where her husband, Anthony, an Iraq war veteran, works for an equipment manufacturer. He can visit Madalin only on weekends. Jaymie Smith, Dylan and 2-year-old Jase stay in the Oklahoma City area, spending the night with friends or her mother, who also works full-time.
That leaves Jaymie Smith little time to be alone with her daughter, to hold her and treasure every moment of this new life.
"Most of the time I’m up here, I can only stay 30 minutes to an hour,” she said while holding Madalin and also trying to soothe son Jase.
The family has medical insurance, but little cash for gas, babysitters or food.
Norris has set up a trust account in Madalin Smith’s name at MidFirst banks in Oklahoma.
Madalin seems to have a reserve of patience. During a recent visit, the baby’s blue eyes looked around inquisitively, under a dusting of dark hair and lavender ribbon.
She might go home in a few weeks, after she’s able to breathe without oxygen and eat without use of a feeding tube.
"She just needs to get bigger and stronger,” said Dr. Marco Paliotta, her cardiovascular surgeon.
Nurse Lauren Husted said Madalin has an incredible will to survive.
"I think she’s one of the strongest patients we’ve ever had,” Husted said. "She’s fought harder than any of our babies that have had that.”
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God bless you little angel! There is always hope through faith, and I pray that the family gets all the help that is available. I look forward to reading about you graduating from high school!
I know a child that has this disorder and he is now 6 year old and doing well, he has had numerous surgeries and scares. He has a pacemaker and is playing soccer,he does get winded easily. There is a web sit that has other family that have been dealing with this disorder. This may be something the family may want to look into, because I know that in Texas they have a hospital that he has been to numerous times that have experience dealing with this disorder.
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Hypoplastic left heart syndrome
It is a birth defect in which a baby is born with the left side of the heart — including the aorta, aortic valve, left ventricle and mitral valve — underdeveloped. Babies with this syndrome become ashen and have difficulty breathing and feeding. Unless treated early, it can be fatal in the first weeks of life.
Source:
American Heart Association
How to Help
A fund has been set up at MidFirst bank branches in Oklahoma to assist the Smith family. Donations can be made at any branch to the "Madalin Smith support trust account” or mailed to any branch in Oklahoma.
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