Pages tagged "CHD"


Meet Kinsey: 2017 Speak Now for Kids Family Advocacy Day Hero

Kinsey was born with Truncus Arteriosis, a congenital heart defect (CHD), and DiGeorge Syndrome, a deletion of part of the 22nd chromosome. These two conditions have caused a number of medical complexities and have presented several challenges for Kinsey and her family. Throughout her life, Kinsey has had five open-heart surgeries, various illnesses and surgeries unrelated to CHD, and many other hospitalizations. Kinsey also went on ECMO (advanced life support) as a teenager to combat a serious lung condition.

Without the help of cutting-edge treatments and devoted doctors, Kinsey simply would not be here. She has persevered through every health crisis she has faced. Moreover, Kinsey has impressed her medical staff with her unwavering courage and an optimistic attitude. Kinsey credits God and her family for giving her the strength to overcome each health crisis.


Henry’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Henry’s mom, Rachel, will share his story.


Henry was born in Buffalo, N.Y., on March 15, 2013 — seven weeks early. Up until that point, everything was going perfectly, the way it should. I had great appointments and ultrasounds and the baby was developing well — he was bigger than he should have been at that point — so when my water broke at 33 weeks, we were all in shock.

I was admitted to Mercy Hospital in Buffalo, the hospital that was associated with my OB/GYN, but when they hooked me up to the fetal heart monitor, they knew something wasn’t right. Henry’s heart rate was significantly lower than it should have been. They rushed me to Women & Children’s Hospital of Buffalo for an emergency C-section. 


Zoey's Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Zoey’s mom, Tori, will share her story.


My journey as a heart mama

Blake and I went to our 20-week ultrasound brimming with excitement to discover what we were having. Mixed with the joy that we were having a princess came the shock that she had a serious congenital heart defect. I was dumbfounded; I did not know that babies could be born with broken hearts. We went into the appointment as normal future parents and walked out as heart parents-to-be. My pregnancy was filled with doctors, echoes, blood work and genetic testing instead of baby showers and maternity pictures. We chose the name Zoey — which means life in Greek.


Megan H.'s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Megan, a former child patient at Texas Children’s Hospital, and editor of the Texas Children’s Blog, will share her story.


Celebrating 10 years with a new heart

Originally posted June 15, 2016

Ten years ago, a family lost their daughter. Ten years ago, a 17-year-old lost her best friend. Ten years ago, friends, family and loved ones had to say goodbye to a girl who passed away too soon.


Barrett’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Barrett’s mom, Jessica, will share his story.


When I gave birth to my son, Barrett, I had no idea that anything was out of the ordinary. My pregnancy had been fairly typical with two normal ultrasounds. After a long and exhaustive labor that started with a two-hour car ride to a Duluth hospital from the North Shore of Minnesota and led to an emergency cesarean, Barrett arrived at 2:50 a.m. on July 30th, 2014 — just hours after his due date. He was perfect and finally here. We spent that entire day with a newborn that behaved exactly like newborns do: eating like a champ, getting his first bath from the pretty nurses, meeting new friends and family and filling his diapers.


Aidan’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Aidan’s mom, Shannan, will share his story.


 Aidan was born in May of 2008. Although we knew he would come into this world facing almost immediate open heart-surgery, we considered ourselves fortunate  — fortunate in that we knew, in advance, that Aidan would be born with a life-threatening cardiac defect known as hypoplastic left heart syndrome (HLHS). In short, Aidan would be born with a half-functioning heart, which, unless repaired through immediate intervention, meant he would not survive.


Luca's Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today we’ll hear from Luca’s mom, Julie.


During my pregnancy, we knew nothing of Luca’s heart condition until his due date passed and I went to have my fluid levels checked. 


Elijah’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Elijah’s mom, Jenny, will share his story.


When the doctor told me Elijah was almost here and it was time to push, I didn’t expect to have tears of alarm. I should have been overjoyed that I was finally going to meet my firstborn son, but I knew that for Elijah, his exit from the womb would mark the start of a fight for his life. Elijah was diagnosed at his 20- week anatomical scan with a congenital heart condition known as transposition of the great arteries, where his two main arteries out of the heart were switched. Several teams waited for him after he was born to immediately wheel him to his first heart procedure, a balloon septostomy to create a connection to allow oxygenated blood reach his body. Six days later, which we came to call his second birthday, he had his life saving open-heart surgery, in the form of an arterial switch.


Rayna’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Rayna’s mom, Sara, will share her story.


Our Journey into the world of CHDs

In the summer of 2006, Tim and I found out that we would be parents to our second child and were beyond thrilled. We went to all our visits, and at each prenatal visit and ultrasound we waited to hear her heartbeat and were so excited to hear what we thought was a healthy heartbeat — little did we know.  


Madeline’s Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, Madeline’s father, Tim, will share her story.


When Madeline was born in May of 2005, my wife, Bridgette, and I used to comment on how lucky we were that we had such a healthy baby girl. Many of our friends also had young children and they were constantly going to the doctor for the usual childhood ailments — colds, strep throat, GI issues, etc.  However, Madeline was never sick — the only time we had to take her to the doctor was for the normal early child checkups and shots.  


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