A 1 in 110 nurse!

Donna Maheady

Congenital heart defects are America's #1 birth defect. Some of the conditions include atrial septal defects, Tetralogy of Fallot, hypoplastic left heart syndrome, transposition of the great vessels, and ventricular septal defects.

Christy Sillman was born in 1980 with Tetralogy of Fallot with pulmonary atresia. Doctors told her parents she would likely only live a few days. Luckily a trial drug and a shunt helped her to survive.

Childhood was filled with many more treatments and surgeries. She admits to being a "terrible patient!" Around age 18, her pediatric cardiologist told her she was "cured" and wouldn't need to see a cardiologist again.

For the next ten years she moved on with her life. She went on to become a health educator, graduated from nursing school and got married. When she got pregnant, additional problems resurfaced. She developed arrhythmias during her second trimester. She delivered a healthy baby boy, but soon after it was found that she had developed postpartum cardiomyopathy. Fortunately, treatment was successful.

Christy has worked as a nurse in both inpatient and outpatient settings, with children and adults. She applies her experiences to the nursing care she provides and is an advocate for patients with congenital heart defects. Christy's frustration with being told that she was "cured" moved her to become an advocate for patients with CHD. She blogs for the Adult Congenital Heart Association on a wide range of topics including nutrition, working with insurance companies, medications, finding balance, life as a heart Mom and her trip to Washington, D.C. to be part of Congenital Heart Advocacy Day.

In her blog post entitled "Heart Shaped awareness", she wrote about what she wants others to know.

Quote
I want them to be aware of how common CHD is. One in 110 babies are born with some form of CHD; that's a high rate of occurrence. This isn't a rare disease.I want them to understand that it can be a "silent" disease. That even though I look "normal" I face challenges every day that others don't. It's a condition I always carry with me, even if I don't always garner attention about it.

She continues with...

Quote
I want them to understand that it's not a cookie cutter disease. Every person with CHD has a unique set of issues and has faced many different types of procedures. I want them to know that even though I've had "corrective surgery" my heart will never be repaired or "normal." Once you cut into a heart it is forever changed. I want them to understand that CHD is still considered a pediatric disease by many in the medical community, but since the development of successful treatments, there are now more adults with CHD than children, and our needs are unique within the context of aging and adult life events. Despite this shift in the CHD population, most research continues to focus on the pediatric patient with CHD.

Today, Christy is the nurse coordinator for the Adult Congenital Heart Program at Stanford. The medical director of the program had this to say about her.

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My patients tell me that they love talking to Christy because not only is she an exceptional nurse, but she gets it," said George Lui, MD, medical director of the program and clinical assistant professor of cardiovascular medicine and pediatric cardiology at the Stanford University School of Medicine. "They're excited to speak with someone who has been through it firsthand. Not many programs have this kind of asset.

Christy's advocacy efforts also involve being involved in a group called the "zipper sisters". They have a page on Facebook and for CHD awareness week, the group is featured in a touching video on youtube.

Can you help Christy spread awareness?

Patients born with congenital heart disease need lifelong specialized care. As Christy says, "Once you cut through the heart it's never the same. It always needs to be cared for."

References

Adult Congenital Heart Program

How a Terrible Patient became a Dedicated Nurse

meraki86 · Feb 9, 2016

Thank you for this! I am a CHD nurse. Love what I do, love those kiddos.

Donna Maheady · Feb 9, 2016

Thank you for this! I am a CHD nurse. Love what I do, love those kiddos.

Thank you for commenting. It should be a great resource to share with parents!

gloriancimino · Feb 10, 2016

I loved seeing this! My daughter, Arianna, has Tetralogy of Fallot with V.S.D. - she had corrective surgery when she was 7 days old. We have had some bumps in the road, but she is doing amazing! I am almost finished with my 1st semester of nursing school and I would love more than anything to become a pediatric cardiology nurse!

Donna Maheady · Feb 10, 2016

I loved seeing this! My daughter, Arianna, has Tetralogy of Fallot with V.S.D. - she had corrective surgery when she was 7 days old. We have had some bumps in the road, but she is doing amazing! I am almost finished with my 1st semester of nursing school and I would love more than anything to become a pediatric cardiology nurse!

Thanks so much for sharing. Go Ariana and go you!! You will be an asset to our profession.

Not_A_Hat_Person, RN · Feb 10, 2016

Thanks for this. My daughter has HLHS. She's almost 2, and is having a Fontan in May. She had a rocky start, with prematurity and suspected NEC. She had her first surgery at 2 days old. As a nurse, I know what can go wrong, and my father died soon after cardiac surgery. She came home 6 weeks later eating by mouth, without needing oxygen. Things got easier after surgery #2. Unless she's not wearing a shirt, you would never know she has a heart problem.

**NickiLaughs, ADN, BSN, RN** · Feb 10, 2016

I was born with congenital heart disease. Which luckily did not require surgery, just my tE fistula, a colostomy, colostomy reversal etc. I still have holes in my heart to this day, but other than occasional palpitations and rare light headedness I've had no issues in adulthood. I'm currently 20'weeks pregnant with baby #2. My 5 year old is very healthy and just a joy and so far it looks the same for the next nugget.

Donna Maheady · Feb 11, 2016

Thanks for this. My daughter has HLHS. She's almost 2, and is having a Fontan in May. She had a rocky start, with prematurity and suspected NEC. She had her first surgery at 2 days old. As a nurse, I know what can go wrong, and my father died soon after cardiac surgery. She came home 6 weeks later eating by mouth, without needing oxygen. Things got easier after surgery #2. Unless she's not wearing a shirt, you would never know she has a heart problem.

Yeah!! Keep the faith!

Donna Maheady · Feb 11, 2016

I was born with congenital heart disease. Which luckily did not require surgery, just my tE fistula, a colostomy, colostomy reversal etc. I still have holes in my heart to this day, but other than occasional palpitations and rare light headedness I've had no issues in adulthood. I'm currently 20'weeks pregnant with baby #2. My 5 year old is very healthy and just a joy and so far it looks the same for the next nugget.

So great to hear! Please get involved in advocacy efforts!

A 1 in 110 nurse!

About Donna Maheady

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