|
|
|
McPhersonSentinel - McPherson, KS
  • Family spends Christmas waiting for transplant

  • During this Christmas season, McPherson residents Rachel Hoffman-Goebel and Jeremy Steimel call the Aurora, Colo. Ronald McDonald House home, as they await news of a heart transplant for their 9-month-old daughter, Brynleigh.
    • email print
      Comment
  • During this Christmas season, McPherson residents Rachel Hoffman-Goebel and Jeremy Steimel call the Aurora, Colo.  Ronald McDonald House home, as they await news of a heart transplant for their 9-month-old daughter, Brynleigh.
    Brynleigh is cared for at Children’s Hospital Colorado, also in Aurora. She was born with hypoplastic left heart syndrome, a congenital heart defect which, in her case, will require a heart transplant.
    “It’s like a beautiful painting,” Steimel said. “The bright colors are the good days, and the dark colors are the bad days.”
    Brynleigh was born March 18 at Children’s Mercy Hospital in Kansas City. Hoffman-Goebel said doctors first discovered there was a problem with her daughter’s heart before she was born.
    In hypoplastic left heart syndrome, the left side of the heart does not fully develop. In Brynleigh case, it did not develop at all. There’s no left side of her heart. She has a very tiny aorta, which they couldn’t see on sonogram or echocardiogram.
    The largest artery in the body, the aorta extends from the left side of the heart down into the abdomen, where it serves as the body’s largest blood vessel.
    Hoffman-Goebel said, in many cases, surgeons perform a series of three open heart surgeries in order to replumb the heart. Brynleigh went through the first surgery on March 27, which had been intended to give her a more functional aorta and better circulation to the lungs.
    Scar tissue formed on Brynleigh’s aorta, requiring another procedure to reopen it. Because of this, her heart function, already 60 percent of a healthy infant’s, dropped to 20 percent.
    Hoffman-Goebel said on Aug. 1, Brynleigh underwent a heart catheterization in order to determine if she could receive the second surgery.
    “As they were trying to take the tube out,” Hoffman-Goebel said, “she went into tachycardic arrhythmia.” In tachycardia, the heart will beat far faster than it should. “They took her off dopamine and her heart rate went down. Within two hours it was back to normal.”
    On Aug. 2, Brynleigh’s doctors concluded her heart function was too poor for further surgery and a heart transplant was necessary.
    Brynleigh’s cardiologist contacted Children’s Hospital in Aurora, and she was accepted right away.
    After Brynleigh’s arrival at Children’s Hospital Colorado, she underwent tests for transplant consideration.
    Brynleigh’s was placed on the United Network for Organ Sharing list. Her status is 1A, which is the most critical.
    ‘A huge, life-changing event’
    Hoffman-Goebel said Brynleigh’s days are largely spent resting, sleeping and staying comfortable.
    Page 2 of 3 - “She’s fed through a nasogastric tube,” Hoffman-Goebel said, referring to a feeding tube which runs from the nose into the stomach. “She has what they call an oral aversion from being here for so long. The goal is to get her used to the taste of baby food and pureed food. She also undergoes physical therapy from being in the hospital for so long.”
    For Hoffman-Goebel and Steimel, the decision to stay at the Aurora Ronald McDonald House to remain close to their daughter has not come without its costs.
    Hoffman-Goebel said this was a huge, life-changing event.
    “I had to resign my job as a para-educator for seventh graders,” Hoffman-Goebel said, “and he lost his job as a maintenance worker because of the time requirement. There just wasn’t any way to drive back and forth and make it to work.”
    The Children’s Organ Transplant Association has been a crucial link for the family, supplying them with donation funds to help them financially.
    COTA representative Jim Inman said the organization, based in Bloomington, Ind., was founded in 1986 to help a local boy in need of a transplant.
    The organization works to find volunteers in the community to spearhead fundraising.
    “We want the parents or guardians to focus on their child and family,” Inman said.
    ‘What a blessing they were to this family’
    For Hoffman-Goebel and Steimel, ultrasound application specialist Amanda Thompson stepped into the role of volunteer.
    Thompson said she first met Hoffman-Goebal while a sonographer at McPherson Hospital.
    “I did sonograms on her when she was pregnant,” Thompson said. “Since then we seem to run into each other around town and through Facebook. I now travel for a living and Colorado is one of the states I cover.”
    Thompson said that, when she found out Brynleigh and her parents were staying in Colorado, she stopped by whenever time would allow.
    “Rachel asked me if I would like to work with COTA in their fundraising efforts for Brynleigh,” Thompson said. “I was more than happy to help a child in need in any way I could, especially one from McPherson. Brynleigh is a sweet baby and is getting her own personality. I’ve developed a soft spot for her. I pray every day that she’ll get a new heart.”
    Thompson and other friends organized a local fundraising luncheon and auction, which took place Dec. 15. The effort raised $2,600. Thompson said she was humbled by the local businesses that gave.
    “What a blessing they were to this family,” Thompson said.
    Page 3 of 3 - Inman said 100 percent of the funds raised go for transplant-related expenses, with no fees.
    ‘I’d give anything to be here with her’
    Hoffman-Goebel said for Christmas, her three other children, Christian, 10, Camden, 7, and Cyler, 3, will be visiting Monday through Thursday.
    “We’ll have to divide time between the boys and Brynleigh,” Hoffman-Goebel said, “because they’ll only be able to see her one time for two hours due to hospital restrictions.”
    During this visit, Brynleigh will open her gifts.
    “Her big gift is a playmat so she can learn to roll and we can help encourage physical activity,” Hoffman-Goebel said.
    Hoffman-Goebel said the last 18 months have been a whirlwind.
    “It’s been an emotional rollercoaster,” Hoffman-Goebel said. “We’ve met new families who have children with the same condition. We’ve made new friends. It’s been terrifying but amazing at the same time.”
    Steimel said the situation has proven to be a true test of character.
    “Every day is a trial,” Steimel said. “It tests you. I’ve been lucky enough to be able to take a step back and weigh it all. To experience it all changes you. You come to realize that we’re here for today, and anything could change at any moment.”
    Steimel said the family has found much support with the other parents and family at the Ronald McDonald House.
    “You’ll get to talking with them and you learn they’ve gone through or are going through the same thing you are,” Steimel said. “You develop a really strong bond with them. We still talk to parents from our time in Kansas City. It’s a very intimate thing. Everything comes out. We cry with them. We laugh with them. The bond can be stronger than family. It’s helped us a lot, and we hope we’ve helped other families, too.”
    Steimel said while he wished circumstances were different, it was good to have others to walk with.
    “It’s my daughter,” Steimel said. “This is my life now. I’d give anything to be here with her.”
    Those wishing to donate funds for Brynleigh Steimel can do so by visiting cotaforbrynleighs.com and clicking the “donate online” button. Donations are tax deductible, and COTA is a 501(c)(3) nonprofit corporation.
    For more information on COTA, visit www.cota.org.
    Those wishing to send gifts or items other than money can do so by sending them to: The Ronald McDonald House, Rachel Hoffman-Goebel and Jeremy Steimel, Room 2M, 932 N. Potomac Circle, Aurora, CO 80011.

        calendar