A Part of Our Family

The Howard family shares a message of thanks to Connecticut Children’s Center for Cancer and Blood Disorders following their son’s last chemo.  

gage-photo-for-blogOur son Gage recently finished his last chemo on September 18th. We would like to thank all of the wonderful staff at Connecticut Children’s Medical Center!

Our world was turned upside down in July of 2013 when we learned that our son Gage had Leukemia.  From the very beginning the nurses on the 8th floor were amazing!  Dr. Andrea Orsey is truly an amazing physician and we cannot thank her enough for what she has done for Gage and our family!

His nurse Barb is hands down the best nurse around!  Gage loves her (as do we)!  I am pretty sure Barb can read minds because no matter what she always knew what to do to make Gage feel better!

These last three years have had its ups and downs.  We are so very happy to say that Gage has finally finished his chemotherapy.  It makes our hearts happy to see him just get to be a kid.  We could not have done it without you Dr. Orsey and Barb!!  You will forever be a part of our family!

Lots of Love XOXO,
The Howard Family

Kids Helping Kids: Christopher’s Toy Drive

 Becky, shares her son Christopher’s inspiring story and why he wanted to give back to fellow patients at Connecticut Children’s this holiday season. 

img_0708We brought Chris to the ER in January 2015 after he was unable to walk. Doctors found a tumor on his spine which began a whirlwind of scans, needles and a hospital stay that, at the time, we didn’t know how long would last.

The one thing that Chris could look forward to and that we could use as a reminder to get through the next procedure, chemo or scan was the prize box and toys he received for being so brave. Kelly and the rest of the staff at Connecticut Children’s Medical Center were instrumental in helping us through one of the toughest times we have faced as a family and one way we felt we could thank them was by giving back.

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Last December, I wanted Chris to give back to the hospital in a way that was meaningful for him and something that was feasible to do year after year. He decided that a toy drive was a good idea because he always looked forward to getting a toy at the end of his visits. He wrote his letter and made a list of family and friends that he would like to ask and send his letter. After the toys were donated, he wrote thank you notes to those who donated to show his appreciation. He did the same thing this year. (Now that he is in first grade, his letter was done much more independently!) He added several people to his list and those that he asked were so excited to help him.

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The best part is seeing the excitement on Chris’ face when he looks at the toys people donated as well as when he was giving the toys to Kelly. We hope to continue this each year and that it gets a little bit bigger to be able to make even more kids smile. We are so proud of Christopher for wanting to continue this tradition and for being able to see the importance of giving back!

Nicholas the Brave

Nicholas’s father joins our blog to share his son’s story and help raise awareness of epilepsy.

nicholasThe boy in the picture is my son Nicholas. He is 7 years old and was diagnosed with infantile spasms around 6 months of age. He had 50 to 60+ seizures a day for about 2 1/2 years straight. The doctors tried every possible medication available at the time to control them with no luck. Finally after a tough 3 years and medication, he was seizure free.

That was until 6 months ago when the seizures came back. He was hospitalized and we were told that they have come back in a different form. We were told this could happen but had hoped it wouldn’t.. Everything had been going so well but they kept coming back.

Unfortunately, the seizures have set him back developmentally. He doesn’t eat solid food and his main source of nutrition is Pediasure. He lost the ability to eat solid foods when he was put on the ketogenic diet to stop the seizures. Since then he will not touch food. Communication is also a problem. As I stated, he is about one year old developmentally. His speech is very limited and he does not talk much. He can say mommy and daddy and knows his colors. He is learning but has a long road ahead. He also suffers from cerebral palsy on his right side… doctors don’t know when or how this happened either but it limits his function on his right side.

Throughout all this he smiles every day, loves music, NASCAR, WWE, monster trucks and watching his brother play hockey. We have learned a lot as a family and dealing with this disease. It’s not easy but if Nicholas can smile so can we.

We never know what tomorrow brings and making plans is hard to do, but my intention is to raise so much awareness and let others know that they are not alone. We have been there and are still there. I’m looking forward to sharing Nick’s story and helping others in future. We will not give up.

Help us raise awareness and share Nick’s story!

We Are the “Heart Twins”

Shared by Kristin Muraca, CHD Survivor and patient of Connecticut Children’s Adult Congenital Heart Program

14625487_10211130005074938_770223217_nIn anticipation of the New York Congenital Heart Walk this weekend, Kristin shares her story and that of her “heart twin” Jennifer, who together are raising awareness and funds for Adult Congenital Heart Defects.

Twins; neither identical nor fraternal, not born on the same day or to the same parents. Cardiac twins; single ventricles, Fontans, Pacemakers. Young children, born 3 months apart, with young parents, living in the same Connecticut town, and seeing the same doctors. Their pediatric cardiologists introduced their moms to each other – fostering an early CHD connection. Not yet aware of their special bond, Kristin moved one small town over from Jennifer, their mothers lost touch, and their lives moved in different directions.

Fontan, pacemaker, Blalock-Taussig shunt, thoracotomy, liver cirrhosis. Pulmonary stenosis, atrial septal defect, cardioversion, accelerated junctional rhythm, Heterotaxy syndrome, dextrocardia, atrial fibrillation, heart failure all faced by Kristin and Jen long before last years’ Congenital Heart Walk (The excitement from which may or may NOT have caused Jennifer’s fluttering this past summer.) Their medical and surgical stories running parallel but never crossing for over 30 years until Kristin needed an endoscopy to screen for possible complications of her newly diagnosed cardiac induced liver cirrhosis.

When she woke up from the procedure, there was Jen standing by her side.
Jen had been told that she may be seeing adults with CHD come to her unit for endoscopies. Doctors were starting to see ties between the Fontan Procedure and cardiac induced liver cirrhosis and knowing Jen had an almost identical surgical history, her colleagues picked her brain for insight. They assigned Jennifer as the nurse in charge of Kristin’s recovery. When Kristin opened her eyes that morning, Jennifer was taking her blood pressure. It was a set-up. Even in her 15 year nursing career, Jennifer had only cared for one other patient with a single ventricle. There was an instant connection, and inherent desire to get to know each other better.

14694768_10211130004794931_229615300_nThere have been years where they both could pretend they were “normal.” Their parents treated them that way. Neither was raised to feel self-conscious or less capable. They were surrounded by a community of support. Friends sometimes thought Jen’s blue lips were a fashion statement. Jennifer had her Blalock in 2nd grade and a giant paper bag filled with cards from her classmates was waiting for her when she got home. Kristin, whose 4th grade teacher was a former nurse, did her best to explain the Fontan surgery to classmates and other faculty. In turn, most kids were quite protective of Kristin, and as she got older, she would return the favor. Jennifer had her drivers’ license for 2 months before her Fontan surgery. She drove everywhere except to the hospital for surgery, knowing recovery from open-heart surgery would prevent her from going behind the wheel for several months

Kristin and Jennifer spent their entire lives making regular visits to the same pediatric cardiology office. When Connecticut Children’s Medical Center opened in 1996, the young ladies were 22 years old. Despite being adults, the young ladies continued to be followed by the pediatric group. However, they had “out-aged” the hospital, as at that time Connecticut Children’s could not admit patients over age 18. These women were incredibly fortunate though. Their doctors had been preparing for Kristin and Jennifer’s adulthood for a lifetime by planning for an Adult CHD clinic.

Four years ago, the pediatric practice created a continuity of care for Jennifer and Kristin and all of their patients surviving into adulthood. Their pediatric cardiologists Dr. Felice Heller & Dr. Shailendra Upadhyay became accredited Adult Congenital Specialists, and Connecticut Children’s began admitting adult patients with congenital defects. The “Heart Twins” epitomize the importance of appropriate life-long care with suitable and accredited doctors in hospitals that can manage their medical requirements.

These women were able to tackle the real questions of maturity with greater insight. As a child, Jennifer received a strict warning, “Never ever pick up a cigarette! It will kill you.” Or “I could never tell a woman not to have a child, but I’d hate to see all of our hard work go to waste.” She met her husband in high school; they went to the prom together. Her scars and memories of her with blue lips made her feel self-conscious but he wasn’t deterred. They adopted two beautiful children. She often reminds her daughters, “If it weren’t for my heart, we wouldn’t be a family.”

“CHD made me the mature one in my group of friends. It was seltzer for me at every party and I would make sure everyone got home safe” says Kristin. There was the heartbreak in hearing her doctors’ emphatic warnings against becoming pregnant. “It’s like anything else, you freak out for a moment, ask yourself ‘what am I gonna do?’ and live your life.” Kristin embraces other kids as her own giving her an enormous love-filled family.

14694615_10211130014315169_415384426_n“On the day that I was born, the doctors told my 20-year old mom to take me home and love me. How did she do it?” Kristin came to understand that every scar told a story and a possibly grim prognosis is not a sentence. Her parents and family and friends helped her see that. Jennifer empathically understood that. It’s the legacy these women are creating. Spreading and urging awareness. Awareness of congenital heart defects, awareness of our relationship to our own health and the importance of life-long care. Awareness of connecting with one another and knowing that “The Time to Be Happy Is Now.”

You often hear about that weird “twin thing.” The ability twins have to intuitively sense one another. It’s not so different from the CHD community we’re building here. Join The Heart Twins and Team CT CHD at the NYC Congenital Heart Walk on Sunday October 23rd.

Learn more at http://events.congenitalheartwalk.org/site/TR/Walk/General?pg=team&fr_id=1514&team_id=12972