• Heather Abbott: Becoming an advocate for son and others

  • As Heather Abbott talks about her desire to have a big family, her teenage daughter laughs in the background.

    “Why would you want a big family?” asks 14-year-old Cierra on a recent Friday afternoon at the family’s Blue Springs home.

    “Because family makes you rich,” replied Aaron Abbott, Heather’s husband and Cierra’s stepfather.

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  • As Heather Abbott talks about her desire to have a big family, her teenage daughter laughs in the background.
    “Why would you want a big family?” asks 14-year-old Cierra on a recent Friday afternoon at the family’s Blue Springs home.
    “Because family makes you rich,” replied Aaron Abbott, Heather’s husband and Cierra’s stepfather.
    In lengthy conversations with Aaron and Heather, listeners might get the feeling that the parents of three consider themselves quite wealthy when it comes to family.
    While Heather, 38, said her life now is nothing like she would have envisioned it years ago, she doesn’t want to change a thing.
    For the past two years, Heather has learned to stretch the definition of what it means to be a mother, making the list of responsibilities include advocacy and educating.
    As Heather discovered when her third child, Gaige Abbott, was born two years ago, if the resources to educate others about a curve ball that life throws you don’t exist, you’re left with two choices: Pout and complain about it, or create the means for sharing those resources yourself.
    Heather chose the latter.
    Just six years ago, Heather was the single mother of two children. She wanted that big family, but she wasn’t looking for a new relationship.
    Then, in 2006, she met Aaron Abbott at a wedding.
    “Even though we were at different places in our lives, we were kind of headed toward the same path,” Aaron, 31, said.
    Two years later, Aaron and Heather were married, and Aaron became a stepfather to Heather’s children from her first marriage. Robert, 16, and Cierra, 14, are both students at Blue Springs High School.
    Because both Robert and Cierra had been born nine weeks premature, Heather planned her third pregnancy and started shots at 20 weeks to prevent premature labor.
    The pregnancy itself with Gaige went fine, Heather said, but at about 20 weeks, doctors discovered that his right kidney was cystic. At 24 weeks, a problem was found in Gaige’s heart – his aortic arch was incomplete and didn’t match up – and Heather and Aaron were told that their new son would likely need surgery not long after birth.
    On Nov. 30, 2010, Heather’s labor was induced, and Gaige was born at 2:41 p.m. at Centerpoint Medical Center in Independence. About 20 specialists were in the delivery room, ready to check the infant’s vitals if necessary.
    “We expected the worse,” Aaron said, “but luckily, he didn’t listen to them.”
    Heather got to hold her new baby boy for less than five minutes before he was taken to the neonatal intensive care unit to stabilize him.
    Several hours later, Gaige was taken to Children’s Mercy Hospital in downtown Kansas City.
    Page 2 of 3 - “Tear my heart in two – it was brutal,” Aaron said of the experience of having his wife at one hospital and his new son in another. “It was just a long and frightening day.”
    Gaige was two weeks old when he underwent open heart surgery, and around that same time, genetic testing confirmed that he had 22q11.2 deletion syndrome.
    Upon first looking at Gaige Abbott, most people don’t know that the 2-year-old boy has the second most common cause of developmental delay and major congenital heart disease after Down syndrome.
    “Pretty much all we get is, ‘Oh my gosh. You have the cutest kid in the world,’” Aaron said.
    Gaige’s disorder is caused by the deletion of a small piece of chromosome 22 and affects an estimated 1 in 2,000 to 4,000 people, according to the U.S. National Library of Medicine. The condition might actually be more common because some people show so few signs that they aren’t diagnosed.
    Aaron joked that he is no longer allowed to fill out paperwork about Gaige because when he is asked to list a diagnosis, Aaron writes, “Awesome.”
    “It’s true. Yes, he has a genetic condition, but he’s not a disorder. He’s my son,” Aaron said. “We’re going to advocate for him. He’s beautiful. He’s amazing and smart.”
    No two cases of 22q11.2 are the same. Gaige’s condition isn’t life-threatening, and the major issues should be resolved throughout childhood, Heather said.
    Gaige’s schedule is kept busy with occupational, speech and physical therapy appointments, in addition to meeting regularly with a nutritionist. He also visits 11 clinics at Children’s Mercy Hospital.
    He’ll learn to speak by age 4 or 5, but for now, Gaige uses sign language to communicate phrases like “please,” “hungry” and “thank you.”
    Gaige is tiny for his age, weighing less than 20 pounds. He’s 2 years old, but he’s wearing clothes for babies 9 and 12 months old.
    A malformation on one side of Gaige’s brain causes a condition similar to cerebral palsy. He wears SureSteps to get a stable base for walking and also uses a small walker – but he could walk on his own at any moment, his parents said.
    Both Heather and Aaron juggle full-time jobs – Heather works for GE in dispute resolution and Aaron works in collections – in addition to juggling Gaige’s schedule packed with appointments.
    “It was definitely different than with my other two kids,” Heather said. “Before he was born, I never questioned a doctor, but having a child with special needs, you learn to become their advocate.”
    Many doctors, the Abbotts found, knew very little, if anything, about 22q11.2 deletion syndrome. When Gaige was born, Heather said few resources existed in the Kansas City area for 22q11.2, so she and Aaron read up on the syndrome online, only to be bombarded with a list of 180 different possible conditions.
    Page 3 of 3 - “So, you’re looking at that, and you have this little baby sitting there, and you’re thinking, ‘This is so much to take in, I don’t even know where to start, and there is no one to talk to that has gone through it,’” Heather said.
    She felt strongly that someone should do something – and so, Heather did, in forming Angels With Missing Pieces (www.amp22q.org). The nonprofit organization is committed to educating others about 22q11.2, in addition to providing support for other parents and families in the metropolitan area. Heather also serves on the Family Advisory Board at Children’s Mercy Hospital.
    Angels With Missing Pieces had an informational booth at Blue Springs Fall Fun Festival, in addition to participating in 22q at the Zoo in Kansas City. Heather and Aaron would like to grow the nonprofit to include an in-person support group, as well as increase the group’s sponsor base.
    With Heather, Aaron said she could have stayed depressed and felt sorry for herself in the beginning, but she’s “put her heart out there” in Angels With Missing Pieces.
    “Heather is amazing,” Aaron said. “She may feel like she doesn’t see the big changes she makes, but other people see it. She’s awesome and doesn’t realize it, which makes her even more awesome.”
    Heather said she wants the success stories of those living with 22q11.2 told. She wants to give hope and provide inspiration to others who once felt alone like she did.
    “It is not at all what I imagined my life would be,” Heather said, “but I would not trade my son for anything.”

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