Feb 11

Heart Month with Finn

In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Finn’s mom, Kelly, on how she’s currently raising awareness for Finn and kids like him.

When I was pregnant with Finn, my doctors believed that he would not make it to his birth. Instead of having four different heart chambers, my ultrasound showed that Finn didn’t have clear separations inside his heart.

My son was born with four congenital heart defects and endured more than 14 surgeries — two of them open heart surgery — during his first year of life. My husband and I spent most of our time learning about this condition and searching for the best care. We researched the top cardiac hospitals in the entire country! It didn’t matter to us if we had to travel across state line — we would do it for our child. The Children’s Hospital of Philadelphia (CHOP) willingly took his case and we were blown away by their care in so many ways. Not only did CHOP check the box for Finn’s cardiac care, but they were able to provide the best care for other anatomical issues. We were very impressed by their ability to work together as a united team and put our child first. They have empathy, kindness and truly treat Finn like their own child.

Feb 04

Celebrate World Cancer Day with Maddy

From a very early age, Madison — lovingly referred to as Maddy — possessed a very strong character and brought lots of laughter and smiles not only to her household but to just about everyone she met. At the age of 3, she embarked on a life changing journey that was also beyond her years — a battle with cancer.

Maddy had been experiencing some discomfort in her right leg and stomach, and her stomach appeared to protrude. After a series of tests she was diagnosed with stage 4 high risk neuroblastoma. Further bone scans revealed that the cancer was not only in her abdomen, but also in her lower spine, her shoulders and her hips — she was given only a 30 percent chance at survival.

In spring of 2018, with the help of the team at Children's National Health System, Maddy celebrated her four-year anniversary of remission and her 9th birthday! She enjoys school and all that life has to offer a special little girl like her. She loves reading, dancing, singing, swimming, outdoor adventures and spending time with friends and family.

Feb 01

Heart Month with Caleb

In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Caleb’s mom and Southwest Regional Director of Mended Little Hearts, Candida, on how she’s raising awareness for Caleb and kids like him.

I was finally pregnant again after two back-to-back miscarriages. This time, it seemed as if it would be a successful pregnancy. As my husband and I were getting excited to find out the sex of the baby at the 18-week ultrasound, the doctor informed us “there might be something wrong.”

Shock, disbelief, fear, confusion, sadness — every emotion you could feel was happening at that very moment. “Oh, by the way, you’re having a boy,” our doctor told us. Every bit of our excitement was gone. Along with that, they wanted us to know our three options: terminate the pregnancy, compassionate care, or carry my child to full-term and hope that a surgeon would operate on him. We found out that my son has hypoplastic right heart syndrome (HRHS). A surgeon informed us that we might have a chance with surgery, but it might be better to wait until he was born.

Caleb had three open heart surgeries at Methodist Children’s Hospital in San Antonio. His first surgery was when he was 3 weeks old and his second open heart surgery occurred at 5 months old. We made it until one month before his 6th birthday before we made the final decision to move forward with the last stage of surgery, the Fontan procedure. Caleb still had issues with arrhythmias and the team hoped to prevent them without medication. They attempted an ablation before surgery but were unsuccessful. They then used the maze procedure during surgery which seemed to do the trick for a few years. Unfortunately, the arrhythmias came back and are being controlled with medication.

Jan 28

Medicaid Matters for Kids Mondays - Paige

Paige looks like a typical toddler, a happy 4-year-old filled with laughter and boundless energy. The little plastic t-shaped device attached from her neck is the only thing that gives away what is decidedly different about this lovable kid.

It is a tracheostomy tube — trach tube for short — that is inserted into a hole in her neck and windpipe, allowing her to do what most people take for granted: breath.

“Ordinarily, babies come out knowing how to breathe,” says Paige’s mom, Amber. “Paige didn’t. She’s learning to breathe from her mouth and nose.” The trach tube was put in at Hasbro Children’s Hospital, where Paige is in the hospital’s ventilator integration program (VIP), which provides medical care for infants, children and adolescents with chronic respiratory problems and those dependent on medical technology.

Paige was born with a giant omphalocele, a type of abdominal wall defect where the bowel, liver and other abdominal organs protrude out of the abdomen into the base of the umbilical cord. “Because of that, her lungs didn’t develop normally, and the blood vessels didn’t develop normally during her prenatal life,” says Dr. Karen Daigle, director of the Hasbro Children’s Hospital VIP program. “As a result, she’s had significant surgical issues and was very sick as a newborn. She developed chronic respiratory failure and was on a ventilator.”

Jan 10

Spina Bifida: Carter's Story

About 120,000 babies are affected by birth defects each year in the United States. Not only can birth defects lead to lifelong challenges and disabilities, they are also the most common cause of death in infants and the second most common cause of death in children aged 1 to 4 years.

For National Birth Defects Prevention Month, Speak Now for Kids spoke with Carter’s parents, Webb and Courtney, to learn what it’s like to parent a child with a birth defect and how the condition affects her family’s life.

Carter was born with spina bifida. Although spina bifida impacts his life every day, Carter does not let it define who he is. This happy and energetic boy loves school, competitive cooking, playing adaptive sports and, best of all, being a big brother to little brother, Cohen.

Jan 03

Birth Defects Prevention Month

About 120,000 babies are affected by birth defects each year in the United States. Not only can birth defects lead to lifelong challenges and disability, they are also the most common cause of death in infants and the second most common cause of death in children aged one to four years

January is National Birth Defects Prevention Month. The theme for 2019 is “Best for You. Best for Baby.” We know that not all birth defects can be prevented. But you can increase your chances of having a healthy baby by doing what you can to be your healthiest self both before and during pregnancy. See the five tips for preventing birth defects below to learn what is best for you and best for your baby:

Dec 11

Children like Grace would be helped by the ACE Kids Act

Grace, 10 years old, is a strong-willed and determined fighter. She needed those traits to battle acute myeloid leukemia, a type of cancer that affects the blood and bone marrow.

Grace was admitted to Children’s Hospital and Medical Center almost two years ago, and it quickly became home for her and her family. The hospital team provided coordinated care to save Grace from this toxic and life-threatening disease. Grace not only received chemotherapy as an oncology patient, she also worked with the teachers at Children’s to stay on top of her education.

“There is no way that any family, regardless of their income, could afford to have a child in the hospital long-term,” her mom says. Grace relies on Medicaid to access treatments and drugs that her primary plan didn’t cover. This is why Grace and her family represented Children’s on Capitol Hill in October to share information about her health journey and the importance of Medicaid with members of Congress.

Nov 28

Diabetes Awareness Month with Samson

Speak Now for Kids is celebrating Diabetes Awareness Month in November to raise awareness about diabetes risk factors and encourage people to make healthy changes. This week, we spoke with Sarah about her experience of parenting son, Samson, who was diagnosed with type 1 diabetes.

About 30.3 million people in the United States have diabetes — it is one of the leading causes of disability and death. Yet, one in four people with diabetes don’t know they have the disease. Diabetes can cause blindness, nerve damage, kidney disease and other health problems if not controlled. But thankfully, people with diabetes can properly manage the disease by living a healthy lifestyle. 

My son, Samson, was diagnosed with type 1 diabetes (also known as juvenile diabetes) about two weeks before his second birthday, after we had contacted his pediatrician about to his frequent urination and weight loss. Shocked and confused at first, we were blessed to have a wonderfully encouraging team ready to take care of us when we arrived at St. Joseph’s Children’s Hospital. Our endocrinologist, Dr. Grace Dougan, and our diabetes educator, Juliana Hite, gave us lots of support and listened to our questions and concerns. They reassured us repeatedly that Samson would live a healthy and active life, and he does.

Nov 26

Children like Alex would be helped by the ACE Kids Act

Alex bravely reaches towards the future. Though his parents feared he might not survive his early years, Alex has faced his medical challenges head on and learned to prosper in spite of them.

Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis.

Due to these serious conditions, Alex’s care is very complex and ongoing. He requires major interventions to remain stable and his medical status changes frequently.

Nov 19

Medicaid Matters for Kids Mondays - Lizzie

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we revisited 2016 Family Advocacy Day alum, Lizzie.

Lizzie is 7 years old and she loves ballet, singing and playing with her little sister and friends. Resilient and determined Lizzie lives with a number of congenital conditions, including the congenital heart defect, transposition of the great arteries, profound hearing loss and pulmonary stenosis. Lizzie had her first open heart surgery when she was only five-days-old and had cochlear implant surgery at age one.

Today, Le Bonheur Children’s Hospital’s Heart Institute takes good care of Lizzie and monitors her cardiac issues. She also sees a speech therapist regularly.

“Without Medicaid there would have been no way we ever could have afforded Lizzie’s surgeries,” states Lizzie’s father. “We still rely on Medicaid to help with Lizzie’s bi-weekly speech therapy and costly echocardiograms which she needs every six months. Medicaid is essential to Lizzie’s care and helps us provide for everything she needs to be successful.”

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