Tough tot brought joy to family, caregivers

During her 13 months of life, she survived 19 surgeries to correct a host of birth defects, and she overcame almost constant fevers and infections.

"She was on death's doorstep more than once," said pediatric heart surgeon Dr. Michael Teodori. "It was remarkable the amount of strength she had in her body to continue fighting."

That's why it came as a shock to her parents and her caregivers when Allie died May 19, unable to overcome her last infection.

Denise Reilly and Greg Burch knew before the birth of their twins, Allie and Adelaide "Addie" Reilly Burch, that one daughter had a correctable heart defect. What they weren't prepared for was a group of associated defects. Of most immediate concern was the disconnect between Allie's esophagus and her stomach. It took a dozen or so operations for her surgeon to stretch the two so they met.

"She always had promise because everything was fixable, either with surgery or with time," her dad said.

"The smallest thing made her so excited, so happy," said her mom. "It was a different kind of joy having a special girl like her."

Allie's parents, who also have a 2 1/2-year-old son, Cole, kept family and friends updated on her condition through blog posting on CaringBridge, an online resource for families dealing with serious illness.

"None of her medical problems played by the usual rules, which made it extra hard for all of us. She definitely kept us searching, kept us on our toes," said Dr. Andy Theodorou, head of the pediatric intensive care unit at University Medical Center. "Somehow, some way she fought back from circumstances we never thought she would survive.

"Her toughness clearly has a genetic component because her family fought right there with her every day of her life."

Sharing the struggle

While Reilly channeled her fears into knowledge - spending countless hours learning everything she could about her daughter's condition, possible treatments and medications - Burch poured his heartache into their blog:

May 25, 2009: The doctors "say Allie just happens to have a lot of fixable problems that will take a long time to heal and that they believe she will lead a normal life. ... We are in the processing stage of all of this and really just getting used to the fact that life has drastically changed for all of us."

June 28, 2009: "Allie has been pretty unlucky so far in the hand that she's been dealt and I'm sure that at times it seems like there is no way this girl can take it. ... It's so tough to write this or speak of because I never imagined that one twin could be so healthy and at home doing great and one so sick."

Aug. 23, 2009: "There are times when I wonder how much more we can handle, but I have to remind myself that we are not the ones in the hospital bed."

March 6, 2010: "Her strength continues to amaze us. ... It is hard to imagine having your chest opened and closed five times in four days. ... She is a much stronger person than I will ever be."

April 4, 2010: "They say God does not give you more than you can handle. If anyone has a direct line, please let him know it feels like we are close. I know I keep asking, but please say a prayer for her. She needs another break."

May 19, 2010: "Allie is with God now."

Brief journey

"Between her and her family - and I emphasize them as a unit - it was not a passive trip through life," Theodorou said. "It was a very active trip through life and they fought together to get the wins that they had."

Allie so charmed her caregivers at UMC that many of the doctors and nurses would call in to the hospital on their days off to check on her.

"She was like a magnet for everybody," said Ashley Coalter, a nurse in the neonatal intensive care unit. "People would come by every day to see ... an Allie smile. She had this positive personality that just came out. She was a bright spot in my day. She loved people and she was so darn cute! We had to dress her up every day with a bow to match her outfit and everybody had to come see her outfit, too.

"Not all babies are happy babies when they are poked and prodded. Allie was pretty amazing. I've never seen a baby get through so much and still have a smile on their face. She was born to be a happy baby," Coalter said.

Added Theodorou: "Allie and her family really touched everybody's hearts in the intensive care unit and it wasn't just because of how long she was there. The love and devotion that came from that room was so strong it was palpable."

On Starnet

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VACTERL association

Denise Reilly and Greg Burch knew before the birth of their twins that one, Allie, had a correctable heart defect. What they weren't prepared for was a group of associated defects known as VACTERL, which stands for:

• V = Vertebral anomalies

• A = Anal atresia

• C = Cardiac defect

• TE = Tracheo-esophageal fistula with esophageal atresia

• R = Renal abnormalities

• L = Limb abnormalities

www.medterms.com

Support

CaringBridge is a free, nonprofit online service that allows families and friends to stay connected during a health crisis. Families can create a website where they can post photos and daily updates and receive messages of support.

Go to www.caringbridge.org for more information.

To suggest someone for Life Stories, contact reporter Kimberly Matas at kmatas@azstarnet.com or at 573-4191.