Over the last five weeks, neither Lindsay nor Alan Markos have been able to hold their beautiful, newborn baby Autumn Elizabeth.
Instead, Autumn’s life has been in the hands of others.
Born with two congenital heart defects that have required a half-dozen open-heart surgeries, Autumn has been at Children’s Hospital since being born Oct. 1. This week, she was added to a heart transplant waiting list.
Her mother and father, a young Greenfield couple, have not been able to rock or snuggle or feed their baby girl since the days just after her birth.
“That’s been the hardest thing,” Lindsay said. “She’s on a bed, and you can’t hold her. You can’t pick her up. There’s so many cords and machines surrounding her.”
Autumn's rare diagnosis
Twenty-six weeks into Lindsay’s pregnancy, Autumn was diagnosed with the most severe type of Ebstein’s Anomaly, a congenital heart defect where the right side of the heart is not functioning correctly, so not enough blood is pumped into the lungs. Making matters worse, Autumn also has a sealed pulmonary valve, which usually allows blood to flow from the heart to the lungs.
“To find out she had the most severe type (of Ebstein’s), I think was what really got us,” Lindsay said. “I knew people could live with it or get it later in life, but that hers was the most severe and that she would need surgery and there wasn’t anything we could do until we had her, that was kind of crazy.”
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Doctors gave Autumn only a 60 percent chance to make it to delivery, but on Oct. 1, as soon as Lindsay reached the 37th week of her pregnancy, Autumn was born.
“It was pretty devastating initially,” Alan said. “It was like the floor dropped out. But because of our faith background, although it was hard, we were hopeful that she would make it though the pregnancy. Once she was born, I felt like, ‘Good, we’re going to get a solution and things are going to work out.’”
Autumn spent the first day-and-a-half in Children’s Hospital’s neonatal intensive care unit before being transferred to the cardiac intensive care unit, where she remains. Doctors performed their first surgery when she was 7 days old, but what was supposed to be a relative simple procedure turned into open heart surgery.
Autumn, who turns 6 weeks old on Monday, has had an open chest for five weeks, and six or seven — the Markoses have lost count — cardiac procedures already. Surgeries to control blood flow through artificial shunt implants have not been as successful as doctors hoped, according to the Markoses.
On Monday, the Markoses received word that Autumn qualified for a heart transplant. They were told once a patient makes the list, the wait averages two months before a new heart is available.
“Having a brand new, healthy heart gives her the capability to live as normal a life as possible and be active,” Alan said. “Without a new heart, Autumn would have to live off one side of her heart. She wouldn’t be able to do sports or be active because her body couldn’t handle it.”
If Autumn has a setback, however — if she were to develop a lung or a kidney problem, for example — she could get knocked off the waiting list. But as of Thursday, all signs were pointing in the right direction.
“Right now we know (a transplant) is her best chance,” Lindsay said.
If Autumn gets her new heart, she’s not entirely out of the woods. She’ll need medication twice a day for the rest of her life to make sure her body doesn’t reject the donated organ, and down the road, she’ll need to schedule doctor visits every three months.
In addition, the Markoses have been told that 30 percent of children who undergo cardiac surgery have kidney deficiencies down the road, and there is a possibility that Autumn would need another new heart decades from now.
In the immediate future, following the heart transplant the Markoses are so desperately awaiting, Autumn’s body will need time to recover from having feeding tubes in her throat almost since birth, and will likely be behind developmentally for her age, at least initially.
A difficult balancing act
Over the last six weeks, the Markoses, both Greenfield High School graduates, have bounced back and forth between Children’s Hospital and home, trying to delicately balance being parents of a child who is in need of a heart transplant and those of two young, healthy children at home: Alexis, 3, and Aiden, 2. Either Lindsay or Alan or both are at the hospital non-stop.
Though too young to fully grasp the precarious position their sister is in, the elder Markos children know that something askew.
‘They don’t really ask about her, but Alexis understands that Autumn’s in the hospital and we pray every day for her,” Alan said. “She’ll play with her babies and she’ll check their heart. And she’ll check our heart. And now Aiden has started to check our hearts.
“They miss us more than anything. Alexis will wake up crying for me in the middle of the night while I’m at the hospital. That’s been really tough, especially for me because I’m gone all the time. I work and then I come here at night.”
Bills, support piling up
Alan is a personal trainer and service director at the Wisconsin Athletic Club in Glendale, but Lindsay has not worked for a while, first because she was taking college classes to become a massage therapist, then because she developed preeclampsia toward the end of her pregnancy.
Bills – both hospital and day-to-day – have wiped out the couple’s modest savings, and while their health insurance has prevented them from falling into an unrecoverable crisis, they are certainly feeling the financial burden.
And assuming Autumn receives her transplant, the Markoses will be saddled with countless prescriptions, doctor visits, blood draws, echocardiograms and much, much more for years and years to come.
Family members, friends and strangers have helped the Markoses in a huge way, from watching Alexis and Aiden, to buying groceries and giving them gift cards so they can go out for dinner and get away from it all.
And their church, St. Alphonsus Catholic Church in Greendale, set up a meal program that provides two to three meals each week.
“The church has been awesome,” said Lindsay, who like Alan, has taught religion classes to confirmation students at St. Alphonsus for several years. “It’s awesome to know that people are supporting us and to know that people are praying for us.”
The Markoses have also received nearly $5,000 in donations through a website designed to help families in need, and on Dec. 1, family members are holding “Autumn’s Wish Benefit” at Jimmy K’s in Greenfield (see attached flyer).
“It’s been amazing. I’m at a loss for words,” Alan said. “The amount of support has been unreal.”
And while the support and their faith have lifted them up during these tough times, waiting has been excruciatingly painful. Waiting for a diagnosis. Waiting to hold their daughter again. Waiting for answers. And now waiting for a new heart.
“There’s only so much we can do,” Lindsay said. “When she has the hiccups, for crying out loud, her chest is open and you can’t hold her so you have to find a way to soothe her. She loves when I just rub her head. That seems to calm her down.
“The waiting and needing to be patient is hard, even now, because everything with her is minute-by-minute, day-by-day."