Lifespan – Just Like Me, in D.C.

One of the most powerful moments at the Congenital Heart Legislative Conference can come not when shaking hands with one of our nation’s leaders, but when you have the chance to connect with someone just like you, just like your child, an everyday CHD survivor. Ken Woodhouse, and adult CHD patient with tetralogy of fallot, Melanie Toth, and her son Luke, a young patient with tetralogy of fallot, share their thoughts on just such an experience in this Q&A.


Ken and Luke in Washington D.C,


PCHA:  Tell us a little about yourself. How has CHD impacted your life?

Melanie:  I was born and raised in Chicago. I married my best friend Ben at age 23. After Ben was involved in a bad motorcycle accident we realized, tomorrow isn’t promised and wanted to start a family right away. At our 20 week ultrasound we heard the words that change the world for so many families, there is something wrong with your baby’s heart. Before CHD, I never thought about volunteering and how you can help others on almost a daily basis. CHD has opened my eyes, my heart, and changed me for the better. I remind myself of that on days when CHD can really suck!

Ken: I was born in 1981 with tetralogy of Fallot and had my first open heart surgery at eight months old. Like many young adults (especially those, like me, who were asymptomatic), I thought I was “fixed” and fell out of cardiology care in late high school / early college. Between that time and 2011 (at the age of 30), when I literally fell back into care after a bicycling accident, I never really thought of myself as a heart
patient. But since that accident, I have gotten very involved with the CHD community as a volunteer and
advocate. In 2014, I had my second open heart surgery to replace my original pulmonary valve, which
had been leaking since birth.

Having a CHD has forced/reminded me to make my health a priority and to focus on the many positive
aspects of my life. (It can be a challenge to do so from time to time, especially when one lives with a
chronic health condition.) At the same time, being a part of the CHD community has introduced me to
some of the strongest, bravest, and most amazing people I know – many of whom have become dear
friends; and I am forever grateful for those connections.

PCHA: What brought you to D.C.? What inspired you to speak to Legislators on Capitol Hill and what were you hoping to accomplish?

Melanie: After Luke was born, I began questioning so many things about why this happened. I didn’t want to dwell on the negative. I found that helping other heart families with support really helped me. After many years of offering support to heart families, I wanted to do more and Legislative Conference was always on my “bucket list” to attend. Many friends both heart parents and patients attended this conference and felt so empowered after coming home. I wanted to feel that way too. I was hoping that sharing our heart journey would help heart warriors just like Luke now and in the future.

Ken: I first went to DC for CHD lobby/advocacy day in 2012, and I’ve gone almost every year since; 2014 was the only exception, as the event was shortly after my second surgery. I don’t recall a specific impetus for my initial visit; I think it just felt like the next/best way for me to get more involved in the cause.

PCHA: Melanie, tell us how you all met. As a mom, what was it like to get to meet Ken and hear his story?

Melanie: We all met by having our first Hill visits scheduled together. I had briefly met Ken before but never really had to opportunity to talk. In walking together to our first visit, we began to talk about the day ahead. In our first meeting, hearing Ken speak directly after Luke and I, starting with, “I’m the adult version of Luke,” it made me realize that one day, that could be Luke. One day that could be Luke speaking from his perspective how CHD has impacted his life. I hope Luke will grow up to be driven, smart, motivated, and a CHD Advocate like Ken.

I always feel some connection to heart families but Ken’s positive and energetic personality was an inspiration. I have met many adults with CHD over the past decade but there was something different about meeting Ken. Just a different feeling like Ken and Luke should have met that day.  Luke is pretty shy and when we came home his teacher asked him to do a PowerPoint about our trip. Luke put it together (with little help from me) and was so excited to share with his friends and teacher that he made a difference in D.C. Not being afraid to tell his story came from his interact with Ken.

PCHA:  Ken, what was it like for you to meet and hang out with Luke? Did it remind you  of your own childhood experience?

Ken: I met Luke and his mom Melanie on our walk from the conference hotel to our first Capitol Hill visits of the day. As it happened that morning, I think it’s common for heart patients and families to connect
over shared experiences, especially in a setting like the legislative conference.

I always enjoy meeting fellow CHD patients, and I think there’s an extra connection when you share the
same defect—tetralogy of Fallot, in our case. With respect to advocacy, my childhood was nothing like
Luke’s. Advocacy and lifelong care were nowhere on my radar at his age. I was asymptomatic as a child
so I never really gave my heart a second thought. When I was younger, my scar felt more like a
birthmark than anything because I didn’t remember that initial surgery as a baby. As an adult – and
knowing what I know now – it’s exciting and encouraging to see young CHD warriors getting involved to
the degree that Luke is.

PCHA:   Luke, how’d you like meeting Ken? Was it cool to meet an adult like you?

Luke: I really liked meeting Ken. He was really funny and laughed at all of my jokes. I met a few kids with special hearts at D.C., but none with the same defect like me. Ken is a SUPER cool tetralogy of fallot warrior, like me.

PCHA:  So how did your DC visit go? Were the legislators receptive to you message?

Melanie: Hill visits this year went great! In Illinois we are fortunate to have so many that attend from our state. We were partnered with heart parents, heart patients (all ages), medical staff, siblings, and bereaved families. It really showed that CHD is lifelong, never cured, with different outcomes. Our last visit with Congressman Raja Krishnamoorthi was a 100% yes as a Co-Sponsor as he is a fellow heart dad. It was a great why to end the day with a yes!

Ken:  While we got to meet Senator Durbin and Representative Bilirakis during the conference, our actual Hill visits (mine, at least) were solely with legislative staffers. In general, everyone I met with was receptive
to our message, to our stories, and to our requests (generally speaking). But the real work, I believe, is in
building the ongoing relationships to continually push for our issues. Nothing happens quickly in DC, and
in order for our advocacy work to truly be successful, we must stay in touch with our elected leaders in
Congress so that our issues remain front and center for them.

PCHA: What did your trip – and your new found friendships – teach you?

Ken: 2018 marked the sixth year that I attended the legislative conference, and I initially wasn’t sure I would learn anything this time around. The format stays pretty consistent each year, and I approached it
primarily as continuing the long but necessary journey toward increased awareness and funding for the
CHD community.

Rather than teaching me something, I think this year’s trip just reminded me that sometimes you can
have an unexpected impact on others when you’re not even trying to and when you least expect it. I
initially got involved in CHD advocacy for myself because of my own personal interests. I never intended
to be inspiring to—or a role model for—others. But meeting people like Luke and Melanie reminded me
that being an adult thriving with CHD can offer hope and encouragement for the younger generation
and their families.

Melanie: Although this was my third conference, it was my the first time my inspiration –  Luke – was by my side. This trip taught me that no matter how long you’ve been in the CHD community, everyone has a powerful story and can inspire you when you least expect it!

PCHA:  What are your hopes for the future of the CHD community?

Ken: There are a lot of strong and passionate voices within the CHD community – and for good reason. I think that continued partnership and collaboration among all members and organizations will only make our voices stronger. At the broadest level, I think the country is facing a serious public health issue with
respect to CHD. Thanks to medical advances, people with CHD are living longer than they have in the
past; and we’re at a point where there are now more adults than children living with CHD. Yet there is a
severe shortage of certified congenital cardiologists to care for the growing and aging population. And at
the same time, we’re not – in a significant enough way – on the radars of Congress, the broader medical
community, major philanthropy, or the general public.

My hope for the CHD community is that we are able to make a real impact to significantly increase
awareness, funding, and –as a result – better longer term outcomes for our CHD warriors. When we talk
about advocacy, we frequently refer only to our work with our elected officials at the federal and state
levels. And no doubt that work is crucial! But I think CHD advocacy is much larger than that. I think
increasing awareness in all areas of our lives is just as important – whether that’s with our primary care
doctors, our families, our friends, our partners and spouses, and anyone else who will listen.

Melanie: Luke got to see what we can do as a heart community together, one voice, we can accomplish so much. My hope is for Luke to continue to use his voice in the CHD community, not just for himself, but all heart warriors from the past, present, and future.



Ken Woodhouse was born in 1981 with a congenital heart defect (CHD) known as tetralogy of Fallot. He had his first open heart surgery at the age of eight months; and like many individuals with CHD, he originally thought he was “fixed” after that surgery. Ken never really considered myself a heart patient when he was younger, and fell out of cardiology care for over a decade between his mid-teens and late 20s. A bicycling accident in August 2011 resulted in a concussion and a trip to the emergency room. While Ken was not seriously injured, a series of follow-up tests revealed that he had an aneurysm in his pulmonary artery; and the reality quickly set in that his CHD was not fixed. In fact, Ken would need additional intervention in the not-too-distant future and specialized care for the rest of his life.

Shortly after that accident, Ken became active in the congenital heart defect/disease community. As an advocate and speaker, he has had the opportunity to share his own story and to help raise awareness on Capitol Hill and at events across the country. Ken is currently a Senior Ambassador and a blogger with the Adult Congenital Heart Association; and his volunteer work in the CHD community has also given him the chance to collaborate with The Children’s Heart Foundation and the Pediatric Congenital Heart Association. Ken feels he is extremely fortunate to have been able to live a healthy and active life. He has always loved the outdoors, cycling in particular.

Melanie’s heart journey began in June 2008, during a routine 20 week ultrasound. She and husband were devastated by the news that their unborn son Luke would be born with a congenital heart defect (Tetralogy of Fallot) and required heart surgery at a week old and again at 9 months old. Feeling very scared and alone during the roller coaster ride of a CHD journey, Melanie decided that no other heart family should feel alone. In 2010, she has started a support group for heart families in Chicago. Working nationally and locally with various CHD organizations. In 2016, she began volunteering with PCHA’s new state chapters, to offer families more than just support. She is currently the State Chapter Coordinator for PCHA National helping to develop state chapters.


New Diagnosis – Brooke’s Story

This Week, Brooke Wilkerson shares the story of her son’s prenatal misdiagnosis, the correct diagnosis after birth, and the roller coaster of emotions the journey brought. 

“There’s something wrong with your baby’s heart.”

“Just say it,” I thought, “Just tell me that there is something wrong so that I can mentally prepare myself for what’s ahead.”

At eight months pregnant, I never thought I would think these things. I never thought that I would actually wish for that statement. But, I did. I wanted to hear those words because not knowing was agonizing. There was a lump in my throat that formed at our twenty week anatomy scan and it wasn’t able to release until I knew, for sure. I knew that there was something wrong. They thought that something might be wrong. But no one could confirm it.

Every month, I would make the long commute to Louisville, to see a specialist who told me the same thing every time- “We can’t get a clear picture of his heart. Everything else looks okay- he’s growing and active- but we can’t say, for sure, if there’s something wrong.”

Every time, multiple technician’s would have a go at my son’s anatomy scan, like a game of darts, and when no one could hit the bull’s eye, they’d eventually give up. They just didn’t know.

Every month I would get my hopes up that today would be the day that they just delivered the devastating news; that they would tell me what was wrong; that they would tell me that the reason why they couldn’t get a good picture of his heart is because it wasn’t normal. I was on the cusp of having my life turned upside down and the anticipation had me by the throat. Every appointment lasted over an hour and for about 4-5 months, I made the drive, I laid on the uncomfortable bed for over an hour just to get the same result. This limbo that we were in changed everything.

I knew that my baby was okay in the womb, and I no longer looked forward to his birth. I just wanted him to stay put- to stay safe- because his birth now came with a lot of uncertainties and fear. At least, while he was still with me, I could feel him move everyday and know that he’s okay; I could take comfort in knowing that, while his heart may not support him after birth, I could carry the weight for him right now.

As we neared my due date, the pressure was intense. Our local hospital was not equipped to deal with a baby with a CHD, and we had to decide if we wanted to deliver there or in Louisville- 1.5 hours away. By delivering locally, we risked being separated if baby Miles was transferred to the children’s hospital.

Four weeks until my due date, and we had, what was supposed to be my last fetal echocardiogram. Again, the results were the same. No one knew. They couldn’t confirm or deny. If they had to guess, he was okay- but what were the consequences if they were wrong? No one was confident enough to place a bet. The cardiologist asked me if I wanted to come back in two weeks, and try one last time and I agreed, even though I knew what would happen. I no longer expected an answer.

The morning of my last echo, I wasn’t expecting an answer. I fully expected it to be just like the other ones- leaving disappointed. The technicians all took their turns, and then the last cardiologist in the practice, who we hadn’t seen, yet, Dr. Holland, took a go at it. He left the room, and came back with a pen and paper in hand, and when he spoke the words, “Tetraology of Fallot,” I was completely taken aback.

I don’t remember what he said after that, aside from “open-heart surgery between four to six months old.” I clearly remember tuning out his words, and telling myself to hold it together- “Don’t cry. Just smile and nod.” Did I even speak after that?

My throat was on fire, and my heart was racing. I had finally gotten what I had asked for- an answer. As he drew two hearts on a piece of paper- one normal, and one, my baby’s- I tried to focus on my restless two year old and act like this was okay- just another day at the doctor’s office. He told me that we would deliver in Louisville, and that there would be a full heart team on stand-by, but we still didn’t know what to expect or how severe his disease was.

As soon as I opened my car door, the four month old lump in my throat exploded. I hadn’t even comprehended what he had said- I didn’t even remember the name of the diagnosis and, had he not written it out on that paper for me, I wouldn’t have known what to tell my husband, who had been texting me non-stop when this appointment went longer than the others.

My baby was going to require open heart surgery to survive. I remember how the words, “open heart surgery” stung; how they felt so foreign and extreme, and I remember saying those words as if they were a question when we told our family about his CHD.

We didn’t know what would happen when Miles was born. Would he be pink? Blue? There were so many people in the delivery room, ready to jump into action. I think I held my breath when I felt them pull him from my womb- waiting to hear him cry.

“Please, cry. Scream, Miles! Let me hear you cry!” I thought, but, I didn’t have to hold my breath for very long, because he did cry. And he screamed. And when they held him up over the curtain, he was a chunky, eight pound, PINK baby!

“Thank you, Jesus.”

His first echo, out of the womb, told a different story. We were told that he did NOT have Tetraology of Fallot, that he would NOT require open heart surgery, and that the hole in his heart would heal on it’s own.

Suddenly, all of the suffering and waiting was worth it. I’d do it all over again, if I knew that they would be wrong. We shared the good news with our friends and family, left the hospital several days later and, for the first time in months, breathed a little easier.

But, that was short-lived. At Miles’ follow-up echo, a week later, Dr. Holland apologized when he told me that they got it wrong. I could tell that he felt so bad when he told me that he saw the first echo and had agreed with the cardiologist on staff when Miles was born! He couldn’t explain to me what happened- why we were on this roller coaster- but, he was confident when he told me, again, that Miles DID have Tetraology of Fallot and that he DID need open heart surgery.

Again, I was not expecting that. I remember thinking to myself, either Dr. Holland is really great at his job- so great, that he’s able to see things that no one else is seeing- or he’s really terrible and subsequently, torturing us.

My husband, our friends and family- nobody really believed him this time.

“Doctors misdiagnose all the time,” they told me.

“There isn’t a thing wrong with that baby,” they stated.

And, for the most part, they were right. Aside from a heart murmur, Miles didn’t show any symptoms of a heart defect. His O2 levels were always good; He never had breathing troubles; He never turned blue. If I didn’t know any better, I would think that he was completely normal.

And while so many people around us didn’t want to believe it, I did believe it, and I don’t know why. But, I’m glad that I did. I’m glad that I listened when Dr. Holland told me what the symptoms of congestive heart failure would be, because when Miles started showing them, he went downhill quickly.

All of a sudden, at 3 months old, Miles was having subcostal retractions that didn’t improve with medicine, he was breathing hard, and you could see his heart moving in his chest, he started to sleep all day and all night long, and he couldn’t stay awake long enough to finish eating.

His heart was failing. Dr. Holland was right.

Miles’ heart was enlarged, because, just like a muscle, when a heart is working hard, it grows- it gets bigger. And his heart had been working really hard to appear “normal” all this time. But, it couldn’t do it any longer.

At four months old, Miles had open heart surgery. We are so incredibly blessed that his surgery went well. Aside from a few complications, we were able to go home (for good) after ten days in the hospital. Miles’ heart was finally able to rest, and in no time, you couldn’t see it moving anymore. He quickly caught up on his weight, and he was happy to eat without tiring.

As it turns out, Dr. Holland is an amazing doctor, and Miles’ VSD (the hole in his heart) was actually much larger than they had anticipated. He’s now the basis for this blog- my sour patch kid, as I call him. And while, most days, he drives me insane with his mischievousness and curiosity, I can’t help but be in awe of him.

Aside from his thin, jagged scar and pacer wire scars, you’d never know that he was born with a congenital heart defect. You’d never know that, historically, Miles wouldn’t have survived. You wouldn’t know that after his open heart surgery, he required a pacemaker because his heart wasn’t working properly. You’d never know that he caught a virus in the hospital and had to be re-admitted after being released just a day prior. You’d never know that at just four months old, his life was saved.

We are forever indebted to that team of doctors and nurses.

Brooke Wilkerson is a 28 year old wife and mom to three, living in the Nashville, TN area. Brooke also started the Coffee & Chaos Blog last year, which is all about motherhood, marriage, and how to laugh at the chaos. Her middle child, Miles, was born with a CHD and required open heart surgery at 4 months old. He’s also the inspiration behind the blog, due to his mischievous personality. He’s doing great now, and there are no future surgeries planned for him! Brooke uses her platform to raise awareness for CHD and is hosting an event this October where a portion of the proceeds will be donated to PCHA.

New Diagnosis – Pulse Oximetry

This week we will hear two perspectives on the benefits of pulse ox and the effort to make this non-invasive test a standard screening of newborns. Pulse Ox screening has made it possible to detect CHD in many newborns that would have otherwise gone home undiagnosed. This week’s contributions were provided by Dr. Gerard Martin, a pediatric cardiologist, and Ms. Lisa Wandler, a pediatric nurse, from the  Children’s National Heart Institute and  Dr. Matt Oster, MD, MPH , a pediatric cardiologist at Sibley Heart Center Cardiology at Children’s Healthcare of Atlanta.



Dr. Gerard Martin, a pediatric cardiologist, and Ms. Lisa Wandler, a pediatric nurse, from the  Children’s National Heart Institute discuss with us how pulse oximetry screening works , as well as its benefits and limitations. 

Screening infants for Critical Congenital Heart Disease (CCHD) using pulse oximetry is recommended in the United States, but this was not always the case!  As of this summer, all 50 states and the District of Columbia will be screening for CCHD.  In many countries, this important life-saving screen is not yet standard for every newborn.  

How CCHD pulse oximetry screening works:

CCHD screening is simple, painless and takes only a few minutes to perform.  It typically takes place around 24 hours after birth either in the newborn nursery or in the mother’s room.  A sticker with a special light probe is placed on the baby’s right hand and either foot.  The measurement that the light probe takes helps the medical team determine whether the baby may have CCHD and require further assessment and testing.

How it has changed standard screening for newborns:

Prior to the implementation of CCHD screening, as many as 50% of infants with CCHD were being discharged from the hospital without anyone knowing of their heart problem.  Without CCHD screening using pulse oximetry, routine newborn screening could help identify hearing and other rare but serious conditions in babies just after birth but not heart defects.  

Benefits/importance of screening:

An undetected heart problem in a baby can lead to severe health problems for the baby and even death.  This newborn screen has helped to decrease the number of babies lost to undiagnosed heart defects and saved many lives.  The CDC continues to investigate the impact CCHD screening has had in the U.S., but an early estimate is that the number of deaths due to CCHD has gone down by 33% in states requiring this important newborn screen.

Limitations of screening using pulse oximetry:

Screening improves the detection of CCHD, however, not all types of CCHD are able to be detected using this screening method.  It remains important to follow the instructions of a baby’s pediatrician and other doctors as newborn assessment and pre-natal ultrasound remain important other ways CCHD can be identified.

Early symptoms of CCHD can include rapid breathing, difficulty feeding and bluish skin.  If your baby has these symptoms, tell the baby’s doctor.


The Critical Congenital Heart Disease Screening Program at Children’s National Heart Institute is composed of Dr. Gerard Martin, a pediatric cardiologist and Ms. Lisa Wandler, a pediatric nurse.  The team at Children’s National has worked on implementation, education and CCHD screening advocacy for over ten years and has provided guidance at the local, state and international levels to those interested in CCHD screening using pulse oximetry.  The team can be contacted at

Gerard Martin headshot, cardiologist, children’s national heart institute




Dr. Matt Oster, MD, MPH  discusses the progress brought by pulse ox and the distance yet to go. 


In my medical career, I’ve been able to see what was once just a promise or an idea be transformed into reality – the ability to screen well-appearing newborns for critical congenital heart disease. While a baby may appear completely well by anyone who sees her, lurking beneath the surface could be subtle hypoxemia – an abnormally low concentration of oxygen in the blood.- secondary to a congenital heart defect. The application of pulse oximetry to detect such hypoxemia has thus allowed clinicians to detect many previously undiagnosed cases sooner, a change
that has led to decreased infant mortality from critical congenital heart disease.

This dramatic change in the care of newborns did not come easily. It took scientists studying the issue to determine whether this could work. It took policy makers the vision to implement this change in their regions. And, most importantly, it took the tireless advocacy of parents and others to call for, and when needed essentially demand, such change.

The application of pulse oximetry to screen for critical congenital heart disease is a true public health success story. And, it has even seen spillover effects in that many children with hypoxemia due to causes other than heart disease are being detected and treated. However, there is still much work to be done. We need to figure out the best way to implement this screening in special settings such as the neonatal intensive care units, home births, or areas of high altitude. We need to improve the quality of the program so that it is implemented consistently and correctly for all newborn. We need to help public health agencies monitor and track the success of this program.

But the biggest change we need to make is figure out a way to increase the sensitivity of the screening. Yes, the program has detected thousands of babies that may have previously gone undetected. But there are still many newborns with critical congenital heart disease that are being missed, even newborns with hypoplastic left heart syndrome. This is typically due to the fact that hypoxemia may not yet be present. We need improved diagnosed methods beyond pulse oximetry to help detect these children. This is not an easy task, but scientists are indeed working on it. And when it’s ready, we’ll need the help of advocates and policymakers to make it a reality.


Dr. Matt Oster, MD, MPH is a pediatric cardiologist at Sibley Heart Center Cardiology at Children’s Healthcare of Atlanta, and he holds Emory appointments of Associate Professor of Pediatrics in the School of Medicine and Associate Professor of Epidemiology in the School of Public Health. He earned his MD at the University of Pennsylvania School of Medicine and his MPH in epidemiology at Emory University Rollins School of Public Health. After completing residency training in pediatrics at the University of California-San Francisco, he did fellowship training in pediatric cardiology at Emory University. When not seeing patients, he serves as director of the Children’s Cardiac Outcomes Research Program at Sibley Heart Center. His research interests include newborn screening for congenital heart disease, the epidemiology of congenital heart disease, and long-term outcomes for patients with congenital heart disease.