Meet Local Miracles
Meet Kylie, 2012 State of Maine Champion Child
Kylie’s bedtime stories were rather different than most kids in her kindergarten class. Each night, Kylie’s parents would tuck her in bed at the Bangor Ronald McDonald House and go over the next day’s treatments. On December 20, 2010, Kylie was diagnosed with acute lymphocytic leukemia. For the next year, Kylie spent the majority of her time outside the comfort of her own home. While most kids her age were learning how to read, Kylie was learning about bone marrow biopsies, lumbar punctures, and chemotherapy treatments. Today, Kylie is a happy and healthy child who is full of personality. She enjoys reading, being outdoors, and is known for her infectious smile.
Meet Clayton, 2010 State of Maine Champion Child
Clayton is a happy and healthy kid who is full of laughter and stories and loves to hike. All of this is a far cry from his very scary beginning. Clayton’s parents, Tim and Amy, were elated to find out they were expecting a child. Amy remembers, “We prayed for a baby and when the pregnancy test came back positive, I wrapped it up and put it beside Tim’s plate at dinner time. I told him it was the most beautiful thing I had seen in a long time. He opened it and agreed. We were going to be parents! Yay! We called everyone we knew.” And, like most expectant parents, Tim and Amy did everything possible to have a healthy pregnancy and healthy baby. “My husband pampered me; I took vitamins and ate well. We took hypnobirthing classes and natural birth classes. The only class in which I turned a little green was the talk on cesarean births. I could not imagine those needles or those cuts! Little did I know then that a cesarean section would save the lives of my baby and me.” The Wilson’s, who lived in New Hampshire at the time, were vacation in Belfast for Amy’s family’s annual Fourth of July celebration. Tim returned home the next day and Amy woke up not feeling well. “I was nauseous and had some back pain. I started to bleed and my mother rushed me to Waldo County General Hospital where Clayton was delivered by emergency cesarean section.” Later, doctors told Amy and Tim that if they had been even ten minutes later in getting to the hospital their son would not have survived. “We had experienced a placental abruption, and Clayton and I had both lost a lot of blood,” says Amy. A transport team from the Neonatal Intensive Care Unit at Eastern Maine Medical Center came to get Clayton. He was intubated and put on a respirator. When Amy was finally able to get to EMMC, she was shocked. “We never expected to find ourselves there,” she exclaimed. “It never occurred to me when I was pregnant that my baby and I could die in childbirth. That is why we do all we can to support Children’s Miracle Network Hospitals. We can never repay all that was done for us, but we can pay it forward so that others will hopefully have the tools they need to save their children and their families.”
Tammy Morris remembers vividly hearing four words a parent never wants to hear: “Your child has cancer.” Tammy literally dropped to her knees when she heard the news. Her son, Brandon, had Ewing’s Sarcoma of the femur, or cancer in the leg. Tammy, a single mom of three children, gave herself the afternoon to cry. She then got out of bed and began the fight to save her son’s life. “It was so scary – it still makes me shake to think about that day – I thought his leg hurt from growing pains, I had no idea it would be cancer.” “I didn’t want to lose my leg – I want to be a police officer when I grow up,” shares Brandon. However, the doctors believed Brandon’s prognosis was promising if the affected area could be removed right away. Eastern Maine Medical Center quickly assembled a team of pediatric experts, including an oncologist and a surgeon, who offered two options: Brandon’s cancerous leg could be amputated, or an experimental approach could be tried. With the latter choice, Brandon’s cancerous bone would be removed and replaced with a metal rod. This innovative procedure had been performed only three other times – twice by Ian Dickey, MD, a surgeon at EMMC. Brandon and his mom decided on the metal rod. Tammy stills marvels at what doctors in Bangor, Maine were able to do for her son, “I had no idea at the time of Brandon’s diagnosis that EMMC had such experts – if we had to travel for his chemotherapy and his surgery, honestly I don’t know what I would have done. I can’t think of the right words to say to express my gratitude for all the people who helped us.” Today, Brandon is cancer free. He is preparing for another surgery later this summer. Dr. Dickey wants to reinforce Brandon’s hip so that it can better support his leg and withstand the lengthening as he continues to grow. Says Tammy, “I might not have my precious son today without the help of Children’s Miracle Network Hospitals and the doctors at EMMC. I pray that every child has the same opportunity for health and happiness that my son was given.”
Today, Ben is a high school honors students, but his mom and dad do not take any of these accomplishments for granted. “My wife and I were bubbling with excitement when we learned we were expecting our first child in March of 1998,” recalls Dave. “Then inexplicably, her water broke at 22 weeks and we were frightened beyond belief. Our baby wasn’t even considered viable then.” There was nothing Tammy’s doctors could do beyond sending her home for bed rest. “It was a miracle,” says Dave. “Our son remained in Tammy’s womb for another two weeks.” Ben was born at Eastern Maine Medical Center 14 weeks premature, weighing one pound and 12 ounces, and measuring 13 inches long. Despite his tiny size and critical condition, Dave remembers the immense pride he felt, “I was a dad. We have a son!” After his arrival in the world, Ben was whisked to Eastern Maine Medical Center’s Neonatal Intensive Care Unit as a “micro-premie.” Tammy and Dave agree that EMMC became their ‘home away from home.’ They watched in awe as the staff took wonderful care of their tiny, newborn son. “They made what was for us, a scary place—with all of its the machines and tubes—feel like a safe place,” says Tammy. After 101 days in EMMC’s NICU, Ben went home with his family. Today, Dave and Tammy call their family, “perfectly balanced” with Ben and his sister, Olivia, who was born without complications. Recently, the family discovered that much of the equipment used in Ben’s medical care was provided directly through local gifts to Children’s Miracle Network Hospitals. Amy calls Children’s Miracle Network Hospitals an organization of secret angels, “because if it were not for Children’s Miracle Network Hospitals, EMMC, and the gracious support of a lot of Maine people, our son and so many others like him might not be with us today. Thanks to Children’s Miracle Network Hospitals, we are a God-blessed family.”
“I knew early on in my pregnancy that my baby was going to require a team of specialists to help her,” shares a teary-eyed Hilaire Kronholm. The past several years have been a roller coaster ride as her daughter Chloe has undergone heart surgery and various other procedures to keep her healthy. “Even in the beginning when the doctors are telling you all of the things that could go wrong, I felt calm knowing that I was in great hands,” remembers Hilaire. Chloe was born with many health problems including a congenital heart defect. Recently, she was diagnosed with Smith-Magenis syndrome, a developmental disorder that affects various parts of the body and impacts approximately one in 25,000 individuals worldwide. Chloe has specialists all over eastern and southern Maine treating her. Hilaire credits Pam Peck, Chloe’s physical therapist at Eastern Maine Medical Center, with helping her daughter to take steps. “Pam, using toys and different tools, helped give Chloe the confidence to walk. It really opened up her world and I saw a new side of her develop – it was very emotional.” Hilaire has driven tens of thousands of miles over the years to make sure Chloe gets the medical help that she requires. “Every time I need something for Chloe, it’s there whether it’s a specialist or a special technology – it’s one thing I don’t have to worry about.” Hilaire cannot say thank you enough for all the help she receives from family, friends and neighbors, and those who support the Children’s Miracle Network Hospitals. Hilaire shares, “Without people donating faithfully our lives would be much different and I don’t like to think about what that means.” Chloe continues to make great strides. Soon, she will be learning how to use a touch computer to help her communicate. Hilaire is hopeful this will allow her to hear those three words that make every parent smile: “I love you.”
Today, Danielle Beauregard is in the best shape of her young life, due to an important discovery two years ago. Her physicians at Eastern Maine Medical Center diagnosed Danielle with Celiac disease. “I can’t believe what a gluten free diet has done for Danielle. Her seizures stopped immediately- it was like a light switch,” explains her excited mother, Tracy. “Danielle has even gained weight and grown several inches,” she exclaims. Danielle’s story starts like many others. She was born into a loving home to her parents and a big sister, Lindsey. The entire family vividly remembers the day their lives changed forever. “It was June 26, 1996, the day after Danielle’s first birthday. She had a prolonged seizure that resulted in irreversible brain damage. Afterwards, Danielle had difficulty walking and became non-verbal,” her parents recall. Danielle continued to have seizures and was ultimately diagnosed with Infantile Spasms. She was put on high doses of seizure medication, which helped. Danielle continued this treatment for more than eight years, in addition to receiving occupational and physical therapy at EMMC. The family had settled into a routine, says Tracy, “Life was as normal as it could be for us until what we call the ‘downward spiral’ began.” Danielle started having seizures again, which lasted longer and happened more frequently. Danielle’s doctors told her parents that she was not a candidate for neurosurgery and that her medications were aggravating her condition. “She was barely functioning,” recalls Tracy.
Two years ago, specialists at EMMC decided to see if Danielle would be a good candidate for a nerve stimulator, which would help reduce the seizures and her dependency on medication. Tracy refers to that day as “a true blessing.” Danielle’s laboratory work came back, revealing what was actually making her sick. It was Celiac disease. Therapy and medications, combined with a gluten-free diet are now keeping Danielle’s seizures under control. She continues to make gains and is surpassing all of her doctor’s expectations. Life in the Beauregard home is again full of laughter as they take great joy in being a family. Says Tracy, “We are just so thankful that our local hospital, EMMC, has the kind of expertise and compassionate caregivers that our family needs. It makes life so much easier.”
Meet Josh and Sophia
Life has been quite busy for the Bruce Family of Hampden since February 26, 2008. Jessica and Adam were pregnant with twins. Jessica was on bed rest at Eastern Maine Medical Center with three months remaining. Early on the morning of the twenty-sixth, Jessica’s water broke. “I was shaking, I was so scared – I knew the babies were coming,” shares Jessica. “I raced in and made it to EMMC in time to hear my child cry after being born via cesarean-section,” recalls Adam. “It was incredible – she was so small and was quickly surrounded by a team of specialty physicians and nurses.” Meanwhile, their son, the second baby to be delivered, made no sound upon arrival into this world and another team of highly specialized experts took over his care. “Our babies were in very capable hands and that gave us a great deal of hope, as well as relief. It was a long road of many good days and many days when we just didn’t know if Sophia and Joshua would make it. Joshua was the weaker of the two children and he suffered severe head bleeds, which are only survivable by a child this premature. He saw a pediatric neurosurgeon and had a shunt placed in his brain to drain the fluid,” remembers Adam. Sophia went home after two and a half months. To see her today, one would never guess she was premature. When Josh left the hospital after three months the long term effects of his brain damage were not clear. The possibility was presented that he many not sit up or walk, yet today he is doing both. His right arm was clutched and stiff, and today he is using it more. The extent of his injuries may not be known until he starts school. For Sophia and Josh, this has been a year of walking, running and learning to talk, says Adam. “Sophia has done exceptionally well. She is just the nicest little girly-girl you’ll ever meet. Josh hit a minor roadblock this year when he had a seizure while sick with the croup and has since been on medication to prevent them.” Luckily he has not had any more seizures and is under the watchful eyes of a physical therapist and occupational therapist. Joshua’s parents are happy to report he is currently developing normally. “We are grateful and inspired by Josh whenever we look at him. It is really hard not to be since Josh is our family clown. He will do and say anything to make us laugh,” says Jessica.