We learned our son, Elijah, was diagnosed with Trisomy 18 (T18) prenatally. Our doctor explained "what it all means," then handed several sheets of printed paperwork on T18. Every doctor said the same thing, "there's very little, if any, life expectancy for T18 babies." They even discouraged us from learning about the condition ourselves. And with no knowledge of T18, we went to Google and the search results were horrific. We felt hopeless, frustrated and angry.
Elijah was born on March 28, 2017 with full T18, a genetic condition where he has an extra chromosome in every cell of the body. We were told to enjoy our limited time with Elijah as he would probably die soon. We did not receive routine newborn care; instead, we met the bereavement team, palliative doctors and hospice staff. There are many challenges to care for Elijah, mainly because questions regarding his care have limited answers. We still experience challenges caring for Elijah now, but we are not afraid to seek answers. We're not afraid to find a physician who knows. We're not afraid to walk away from a physician who doesn't know.
Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of the Association of Child Life Professionals (ACLP).
Jessie Gordon, M.Ed., CCLS, CIMI, is the child life specialist for the PICU at Norton Children’s Hospital in Louisville, Kentucky. Her unit consists of 26 intensive care beds, some of which are dedicated to cardiac patients, and she also follows pediatric advanced heart failure and transplant patients throughout their stay.
Jessie coordinates the SibStars programming for siblings of chronic patients, many of whom are intubated, on a ventilator or sedated. She helps children understand a sibling’s diagnosis and encourages interaction and bonding. Always considering the sibling’s developmental stage and comfort level, Jessie helps them make meaning of the process, affirms their feelings, and helps them feel included and useful—often with simple gestures such as decorating the room or choosing a special blanket. A successful outcome might be a sibling climbing up in bed next to a brother or sister after weeks of being unwilling to enter the room.
When Krista McHale was driving, she could tell when her 4-year-old son, Colin, was sleeping. The sound of snoring coming from the back seat always gave it away. Colin’s snoring, along with sleep apnea, was cause for concern. After a sleep study, Colin’s pediatrician recommended he have his tonsils removed.
Krista was informed that Colin’s surgery would be performed at the Surgical Center at Memorial Care Miller Children’s & Women’s Hospital Long Beach.
Krista and Colin arrived at Miller Children’s & Women’s at 6:30 a.m. on the day of surgery. The experience would take them both by surprise.
“I was expecting, it being a children's hospital, a certain amount of kid-friendliness during the whole process,” says Krista. “However, my expectations were far exceeded from the moment we arrived.”
After the check-in process, Krista and Colin headed to the pre-operative playroom, where they would meet their surgical team.
Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of Hoops Family Children’s Hospital (HFCH) in Huntington, West Virginia.
Tenley Johnson lay quietly in her bed in the Pediatric Intensive Care Unit at the Hoops Family Children’s Hospital (HFCH) at Cabell Huntington Hospital. The room is filled with balloons and stuffed animals that would put a smile on any child’s face. But today, what made Tinley light up wasn’t a toy or video game— it was a visit from Stephanie Cape, certified child life specialist at HFCH.
“I love Stephanie to come into my room and play with me,” said the 4-year-old with a bright smile. Diagnosed with Spinal Muscular Atrophy Type 1, Tenley makes frequent visits to the hospital. On this day, she was fighting off a virus.
“If I can help bring calm, make the machines fade away and help make a child feel comfortable in a not-so-comfortable environment, then I’m doing my job,” said Cape.
Huggie is a 2-year-old Labrador retriever facility dog, provided by Canine Companions for Independence, and he supports many children receiving treatments at the UC Davis Pediatric Infusion Center. Dogs like Huggie are a tremendous help in normalizing and motivating pediatric patients. Their presence aids in reducing fear, stress, anxiety or pain the patients may be feeling.
In this photo, 4-year-old Bill is getting his central line accessed. “My son hates ‘pokies,’ as we call the needle sticks” says mom, Victoria. “But Huggie helps tremendously by lying next to Bill. He is instrumental in distracting Bill during these sometimes-painful treatments.”
Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of Children’s Mercy Kansas City in Kansas City, Missouri.
Jenna Simpson is a child life specialist at Children’s Mercy Kansas City and has spearheaded innovative interventions to help patients living with Cystic Fibrosis (CF) stay healthy and feel more like other kids.
Children with CF can be hospitalized for a week or two at a time when being treated for chronic issues associated with the genetic lung disease. Many inpatients are on nephrotoxic medications and need to manage fluid intake to prevent the risk of acute kidney injury. Jenna worked with Children’s Mercy pharmacists and dieticians to create fluid and drinking charts to help patients visually monitor daily intake.
When Child Life Specialist, Rose Mills, meets a new patient, her mind immediately runs through the items in her medical tool box. In her role at MemorialCare Miller Children’s & Women’s Hospital Long Beach, her job is to help make the hospital experience more positive for her patients. Rose’s sole focus is caring for kids, so her medical tool box consists of kid-friendly items like dolls, teddy bears and iPads.
One of the unique aspects of her role is preparing children for surgery. Rose relies on her more than 30 years of experience in child development to choose between the tools of her trade. Two of her favorites are a teddy bear and fabric doll she uses to help expose her patients to the medical monitoring devices they might see, such as an anesthesia mask or blood pressure cuff.
“We talk about the different devices, and then I help them draw those medical devices on the doll to demonstrate how it will be used on them,” says Rose. “They can share that doll with family members, teachers or friends and that helps reinforce what we talked about.”
Rose practices the art of “medical play” using a teddy bear to demonstrate how the medical devices will be used. After working with the teddy bear, more times than not, the child will then have the confidence to try the devices on themselves. Along with the doll and teddy bear, Rose often sends her patients home with a medical kit that includes reminders of her preparation session with them. This gives the child a chance to master what they went through prior to their surgery.
Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision makers about rare diseases and their impact on patient’s lives. Speak Now for Kids would like to take this opportunity to honor children with rare diseases and their families. Today, we spoke with Vika’s mom, Ashlee, to learn about her experience raising a daughter with a rare disease.
Speak Now for Kids (SNFK): Please tell us about Vika.
Ashlee: Vika was born with TAR Syndrome and has challenges every day enduring life with a chronic condition. We adopted Vika from the Republic of Georgia almost a year ago and we’re excited for the care that she can receive in the United States. Vika is currently under great care at Penn State Hershey Children’s Hospital. She relies on multiple specialists for care, including hematologists, orthodontists, and endocrinologists. Each physician has taken the time to understand Vika’s complex needs and tailored the treatments for her in mind. In addition to her TAR Syndrome she has Blount’s disease, which is severe bowed legs. She has already outgrown one set of braces in just two months!
SNFK: Why is it important for you to share Vika’s story and advocate for children’s health?
Ashlee: Not too long ago, I was a pediatric nurse and took care of children with complex medical needs. I saw the vast needs of these children and decided to seek adoption of a child with medical needs. We hope to give Vika a life that wouldn’t have been possible if she was left in an orphanage. Adults need to speak for these children as they cannot yet advocate for themselves. As a parent, I see the daily challenges that Vika must overcome to keep up with her peers. Access to health care and specialists is critical for her to continue to grow and thrive.
Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision makers about rare diseases and their impact on patient’s lives. Speak Now for Kids would like to take this opportunity to honor children with rare diseases and their families. Today, we spoke with Emma’s mom, Lydia, to learn about her experience raising a daughter with a rare disease.
We sat here waiting for the results of Emma’s bone marrow biopsy to let us know what we were up against — just a week after the oncologist told us “we don’t think it’s leukemia” and “it’s not that big of a deal.” Remembering that moment still brings me tears. Fearing the unknown can definitely be crippling. Once I heard Emma’s official diagnosis, the weight of the world seemed minor compared to the doctor saying “we would have preferred a leukemia diagnosis.”
We learned that my then 9-year-old, Emma, was diagnosed with a terrifying rare disease called aplastic anemia, also known as bone marrow failure. Aplastic anemia is a life-threatening blood disorder where the body stops producing enough red blood cells, white blood cells and platelets. “Googling” would be an understatement for what I did on the way home that night and the days to follow. The fight for her life began right away — I needed to know exactly what we were up against. What treatments were available? Where was the best facility for the treatments? Who was the best doctor for this condition?
Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision makers about rare diseases and their impact on patient’s lives. Speak Now for Kids would like to take this opportunity to honor children with rare diseases and their families. Today, we spoke with Vivi’s mom, Mihaela, to learn about her experience in raising a daughter with a rare disease.
Eight-year-old Vivi is a special child. Not only because her compassionate and loving personality is irresistible, but also because of her extremely rare disease, Niemann-Pick disease type C (NPC).
NPC is a rare genetic disorder where the body can’t metabolize cholesterol and fats, resulting in an excess of these substances in the body. Cholesterol build up can lead to severe liver disease and neurological symptoms. There are around 500 known cases of NPC in the world and, according to medical experts, 100 percent are fatal due to a lack of a cure. This disease changes the question of “WHEN I grow up” to “IF I grow up.”