Carter & Emma B.
Carter: Age 9 & Emma: Age 6
When Carter was just four months old, he developed pneumonia. A few months later he began battling a persistent cough that wouldn’t go away; he coughed for 16 weeks. Finally, Carter was referred to the Cystic Fibrosis Clinic at The Barbara Bush Children’s Hospital (BBCH). After undergoing testing, Cater was diagnosed with Cystic Fibrosis (CF) at 13 months old (standard newborn screening for CF didn’t begin until in 2008).
A few years later, Carter became a big brother when his sister Emma was born. Emma was diagnosed with CF at eight days old, through newborn screening. And while the family knew what to expect, their mother, Lynn admits that the diagnosis was just as devastating the second time.
Cystic Fibrosis is a life-shortening genetic condition that affects the lungs and digestive system, and currently, there is no cure. About 200 children in the state of Maine have Cystic Fibrosis, and The Barbara Bush Children’s Hospital treats more CF patients like Carter and Emma than any other facility in Northern New England. BBCH is also home the region’s only multidisciplinary Aerodigestive Clinic for children with complex problems affecting the airway, pulmonary function and the GI tract.
In many ways, Carter and Emma are your typical 9- and 6-year old kids. Carter is silly; he finds joy in making people laugh. Carter builds LEGO sets effortlessly, and enjoys playing video games. Emma is full of life; nothing slows her down! She is fearless and enjoys flipping, bouncing and twirling in gymnastics class. Emma LOVES people.
What isn’t typical, however, is that a “normal” day for Carter and Emma looks like this:
When the kids wake up around 6:00AM, Carter takes six different medications and Emma takes five. Before leaving for school, both kids have 10 minutes of nebulizer treatments and 20-25 minutes of percussion vest therapy to loosen the mucus that builds up in their lungs. During flu/cold season, if Carter or Emma show any symptoms, they’re required to use an inhaler and do manual chest physical therapy every four hours at school and daycare. They get home around 5:00 PM and begin their evening routine before 6:00 PM. This includes ten medications for Carter and six medications for Emma. Both have two 10-minute nebulizer treatments and another 20-25 minutes of vest treatments before they go to bed at 8:00 PM. Along with their daily regimen, they typically find themselves at BBCH for multiple extended stays during the year for medical procedures or what they call a “tune up.”
While Carter and Emma may spend more time at BBCH than most kids, it isn’t all bad. Carter loves visiting Alice in Child Life and Mrs. Abby (our hospital-based teacher) for school. Emma loves having physical therapy while hospitalized, as she can run or bike the hallways, racing her therapist.
Age 11 Months
Congenital Heart Defect
When RaeAnne Cook was 19.5 weeks pregnant, she and her husband Andrew were told that their unborn son, Parker had a Congenital Heart Defect that would require open heart surgery. In August of 2015, Parker was born by C-section at The Barbara Bush Children’s Hospital (BBCH). Before the Cooks even had a chance to hold him, Parker was whisked away by the Neonatal Intensive Care Unit (NICU) care team, and it was quickly determined that he would need immediate surgery to repair an Interrupted Aortic Arch. At just one day old, Parker underwent an extensive 6-hour open heart surgery to repair the substantial gap in his aortic arch.
Doctors left Parker’s chest open for four days following the surgery, until the swelling went down enough that they could close his chest. But even then, Parker was connected to so many tubes and monitors that it was ten long days before RaeAnne and Andrew could hold their baby boy for the first time. In the words of RaeAnne:
“I walked into SCU 2, saw a rocking chair, and knew that it was the day I would finally get to snuggle him! The nurses and doctors in the Pediatric Intensive Care Unit (PICU) were so helpful and understanding. It is one thing to learn how to change a diaper on a newborn but it is a whole different story to learn how to do it on a baby after a major open heart surgery who is hooked up to so many machines. The nurses even made Parker a sign to hang in his room. Parker’s surgeon checked on him every morning and would call me directly to fill me in on how his night had gone. After many days in the PICU it was finally time to be moved to the BBCH inpatient unit. As we were heading out of the PICU we received a standing ovation from the nursing station as Parker was wheeled by in his crib.
“The care and service was amazing, starting from the gentlemen at the desk outside the PICU- who remembered our son’s name- to the nurses, doctors and even the volunteers. It was such a hard experience, and we wouldn’t have made it through without all the people who made our lives just a bit easier each day.”
After fifteen days in the PICU, and ten more days in the inpatient unit at BBCH, Parker had met all of the necessary milestones and was able to join his parents at home.
Parker will celebrate his first birthday in August, but he has already enjoyed volunteering alongside his parents at several BBCH events, including serving as a guest of honor at the opening celebration for our brand new PICU in April 2016! Today, Parker receives routine follow-up appointments with his cardiologist, but is perfectly happy and healthy, and according to RaeAnne, “we are a stronger family because of him.”
Premature Birth & Type 1 Diabetes
Nick was born unexpectedly in the middle of the night, eight weeks before his due date. Weighing in at just 4 pounds, Nick spent the first two weeks of his life in the NICU (Neonatal Intensive Care Unit) at The Barbara Bush Children’s Hospital.
Nick’s mother, Kerri, remembers how small Nick was, and how difficult it was to see him in the NICU with a breathing tube and so much equipment attached to his tiny little 4 pound body. But one morning, Kerri and Nick’s father arrived at the NICU to visit and saw a photo of “the most beautiful baby” hanging on Nick’s isolette. Their NICU nurse explained that it was actually a photo of Nick! When the medical team was changing out all of Nick’s tubes, she snapped a photo because she knew that his parents had never been able to see Nick like that before. Kerri explains “I was so grateful that she knew to take that picture and what it would mean to us to see our beautiful baby boy. Being at the hospital is a scary time, but with the caring and understanding staff at The BBCH we felt like our family was in good hands, and we learned enough to become a part of Nick’s caregiving team."
After those first two weeks in the NICU, Nick spent another 2 ½ weeks at The Barbara Bush Children’s Hospital before he was strong enough to go home with his family for the first time.
Four years later, Nick had another stay at The Barbara Bush Children’s Hospital when he was first diagnosed with Type 1 Diabetes. The diagnosis came as a shock to the family, who had no idea what Type 1 Diabetes was, and needed to learn to treat and manage Nick’s disease immediately. “Initially, I was afraid to leave the hospital,” Kerri shared. “I didn’t think we were going to be able to figure out the insulin, needles and carbohydrate counts. But we sat down with the BBCH staff and they gave us the tools and positive encouragement we needed to successfully manage Nick’s Type 1 Diabetes.”
Nick is now nine years old, and is a healthy and active third grader. He and his younger brother, Jack, have fun with their family dog, Scout. Nick also loves to read, play baseball, swim, and play video games.
Hypoplastic Left Heart Syndrome and Acute Lymphoblastic Leukemia
In the words of her mother, Tracy, Aubrey is proof- twice- that even the most scary diagnosis can turn out to be okay.
Tracy’s 21-week ultrasound at her local doctor’s office was the first indication that Aubrey might have heart problems. The family was referred to Maine Medical Center, and little Aubrey was diagnosed with with Hypoplastic Left Heart Syndrome, or “half a heart” before she was even born. This is an extremely rare congenital heart defect, and is fatal without surgery. The remainder of Tracy’s pregnancy was monitored very closely, and doctors prepared the family for the possibility of the worst.
Aubrey was born at 39 weeks, and was placed on a breathing tube right away. She had her first open heart surgery at 3 days old, and had to wait 4 more days before doctors could close her chest because her little heart was so swollen. Aubrey’s recovery was rocky. She spent about a month at The Barbara Bush Children’s Hospital (BBCH) - including 3 weeks in the Pediatric Intensive Care Unit- before she could go home.
Three months later, Aubrey was back at The Barbara Bush Children’s Hospital for a second open heart surgery, but this recovery went more smoothly and Aubrey was home again in less than a week. The following summer, however, Aubrey struggled to grow or gain weight. It was discovered that Aubrey’s aorta had narrowed or folded over, and Aubrey was back at BBCH for surgery to place a stent. She took off growing after that, and Aubrey had her final corrective open heart surgery in May of 2013.
About six months after that final heart surgery, Aubrey began to look very pale and was tired and uninterested in play. Aubrey is a happy, upbeat little girl, and her parents knew something had to be wrong. Testing revealed that Aubrey had Acute Lymphoblastic Leukemia (ALL). In April 2014, the family started their new battle against cancer at The Barbara Bush Children’s Hospital.
By the end of May Aubrey was in remission, and she is now more than two years into her treatment for ALL. These days, Aubrey loves to swim and takes dance classes just like her big sister. True to the entire family’s amazing, positive outlook, they have been volunteering in support of BBCH throughout Aubrey’s entire treatment. Tracy describes Aubrey as a “smart, healthy, all-around normal little girl- which we are very thankful for!”
Hockey isn’t just a sport for Alex. He’s been on the ice for almost as long as he could walk. In a strange twist of fate, hockey also proved to be a lifesaver. In 2008, Alex sprained his wrist after a fall on the ice. Spiraling arm pain over the next month led doctors to a leukemia diagnosis.
After three years of chemotherapy and playing hockey all along the way, Alex is now in remission, spending more time on the ice and emphatically following his favorite team, the Washington Capitals.
Sean was 5 months old when he was diagnosed with Cystic Fibrosis (CF). Cystic Fibrosis is a genetic disorder that affects most critically the lungs as well as other organs. Symptoms of CF include difficulty breathing and frequent lung infections
Despite Sean's diagnosis, he is an incredible athlete who participates in wrestling, lacrosse and football. His twice daily regimen of physical therapy to keep his lungs clear, inhalers and the large number of pills that he must take every day do not impact his positive attitude and huge heart.
Age 16 mos.
Jerzey was born with Bicoronal Craniosynostosis. This is a condition where one or more sutures on a baby skull close prematurely. At 4 months of age Jerzey had surgery at BBCH in order to correct her cranio caused by Saethre Chotzen Syndrome.
In the words of her mother "Any surgery in regards to your child is hard enough but BBCH made sure that not only was our child in great hands but her whole family was. We can not express how grateful we are to Dr. Wilson and the Barbara Bush staff for their love and support through such a difficult time. We could not have done it without any of them".
Hannah, Isabella & Julia N.
Age 6 (and Morgan, the dog)
Hannah, Isabella and Julia were born at 28 weeks gestation. Isabella was delivered weighing only 2lbs, 11oz, Hannah weighed 3lbs 3oz and Julia 3lbs 2oz. The girls were welcomed into the world with the assistance of 15 caregivers in the OR.
In the words of their mother "The staff at MMC NICU were amazing, literally angels....I felt that the nurses were not only caring for my babies, but me too. The experience was emotional - an abundance of joy to see our babies, fear that there could be medical issues, and sadness not to be the caregivers in the first days of their life, exhaustion, and excitement.
"The nurses were always prepping us and teaching us how to handle them, being so small and fragile, we were nervous about bringing them home and not having the 24/7 nursing care, but the day came...Our miracles, thanks to the physicians and nurses at Barbara Bush Children's Hospital were home and on the road to becoming who they are today!"
Acute Transverse Myelitis
In January, Riley, a competitive swimmer, complained of itching and burning in her sides, and the next day numbness in her toes and feet, followed by her legs.
After taking her to the pediatrician, for what Mom predicted was a pulled muscle, Riley was immediately sent to The Barbara Bush Children’s Hospital for an MRI where she was diagnosed with Acute Transverse Myelitis. Her condition worsened rapidly and she was soon completely paralyzed from her waist to her toes. Riley's six week stay at the children’s hospital consisted of two weeks of advanced medical care and four weeks of rehab, when she had to re-learn how to walk. Riley loved her stay at The Barbara Bush Children’s Hospital and quickly deemed herself "Mayor of BBCH." Her prognosis for complete recovery is very good.
In the word’s of Riley’s mother, “As a family, our love for BBCH fills our hearts and spills over. Without the love, caring and dedication from the physicians and nurses at BBCH, our daughter would not have progressed as quickly as she has.”
In the words of Stella’s mom: "Our hospital experience was amazing even though the reasons for being there were horrid! The staff at BBCH became part of our family. It was our safety net and comfort zone during the hard times. Stella spent a good portion of the first year on her treatment in and out of the children’s hospital. She learned how to walk at the hospital and loved to ride around on the IV poles. On nights that I couldn't sleep, someone would be there to talk you through your toxic thoughts. On days when you needed some normalcy, someone else would be there to help you give your baby a bath carefully washing around all of the tubes and lines. When we had to return to the hospital, no one was happy to see Stella sick and having to be back but we were welcomed with open arms and the determination of dozens of her new pseudo parents to help her get better, every time. You all ARE the best! Thank you!"