New Diagnosis – Jaclyn’s Story

This week, PCHA-OH Board Member, Jaclyn Frea shares the story of her miracle baby’s diagnosis with Tetralogy of Fallot.


My husband Bryan and I were married on March 5, 2011 and we knew that immediately we wanted to start a family. Little did we know, getting pregnant would be a lot more difficult than we thought and tragedy would strike two fold. Five months after we were married, I lost my Dad to cancer and, a year and a half later, in 2014, I lost my Mom to a different form of cancer. I am an only child, so losing both my parent was a devastating loss, but we didn’t want to give up at trying to have the family we had always wanted.

Along with the loss of my parents, Bryan and I tried and tried to get pregnant with no luck, each month we thought, maybe this month will be our month, then nothing. We then decided to go through a fertility doctor, only to find out that pregnancy probably wasn’t in our future. At that time, there was no explanation why! We wanted so badly to be parents. We decided to look into the adoption process and were approved; the only thing we needed to complete the adoption process was to find a birth Mom. After 5 years of unsuccessfully trying to get pregnant and just being approved to adopt, I found out I was pregnant!!!

My pregnancy with Paul was amazing. Yes, I had morning sickness, a lot of morning sickness, but I was carrying the baby I had always wanted. I was pregnant with a miracle baby, and I was incredibly grateful and I loved every single minute of being pregnant with this child! From hearing the first heartbeat, to seeing our baby in the ultrasounds and seeing my belly grow, feeling the baby kick and being incredibly active, and then finding out that we were going to have a little boy. God had answered my prayers!

The day arrived when Paul wanted to make his debut and everything seemed to be going pretty smoothly, until, his 36 hour check up. I remember the nurse coming in and telling Bryan and I that she was going to take Paul to the nursery to complete his check up and feeling so blissful about everything being absolutely perfect. A little while later, the doctor came into tell us that they could still hear a murmur in Paul’s heart, and they wanted to send him down to the NICU to conduct an echocardiogram on his heart just to make sure everything was alright. I hadn’t been released from the hospital yet, so we were going between floors being with our son and waiting on me to be discharged.

Bryan and I walked into the NICU, and I remember being greeted at the entrance with our nurse immediately informing us that they were going to be conducting an arterial blood draw on Paul. I remember that my heart sank. I knew in my gut that something was wrong with my baby boy, and the next hour we were waiting on the NICU doctor to come and tell us that our son was born with a Congenital Heart Defect, Tetralogy of Fallot!

How could this be happening, after everything we had been through, a CHD???? Neither Bryan, nor I were prepared, let alone even thought about a CHD! I remember sitting in the chair, sobbing, and the only words I remember hearing were Tetralogy of Fallot, open heart surgery necessary; if he didn’t have the surgery, he wouldn’t survive to be a teenager…..what???!!!

My husband is a Firefighter and Paramedic, and I thank God that he was there because he was so strong and he understood everything the doctor was saying. Paul was considered a pink tet baby, as his O2 saturation remained near 100. Looking at him, one wouldn’t even know that he was sick. In a normal case of Tetralogy of Fallot, the heart shunts blood from the right side to the left side, sending oxygen poor blood to the body. Paul instead shunted blood from the left to right, keeping his oxygen levels very high, but causing constriction of the pulmonary blood vessels and risking permanent lung damage due to this increased blood flow.

Paul was released from the NICU later that day, and that is when the litany of doctor’s appointments and preparations began. Bryan and I kept Paul quarantined pretty much until his surgery, because we wanted to try and keep him as healthy as possible. When he was 4 1/2 months old, he had his complete repair via open heart surgery in 2016 by Dr. Toshiharu Shinoka. Paul is followed closely by Nationwide Children’s Hospital, but now only requires yearly echocardiograms and check ups.

Paul is now 22 months old and he is doing phenomenally well; exceeding every milestone set before him.  Paul is a happy, mellow baby (toddler), who loves the water and can’t get enough of the bathtub and the swimming pool. He is always smiling, beginning to talk, and using lots of sign language (we began to teach Paul sign language when he was 6 months old).  He LOVES music, dancing and trying all kinds of foods.  He is very compassionate with a strong love for animals (he loves to give kisses and hugs where ever he goes). He is an only child, a total flirt
(who no doubt will use his scar to flirt with the ladies in the future).  Paul is a dynamic young man, who is also a giant book worm (he gets to go through about 25 to 30 books each day), walking and running everywhere, is super chatty, and is climbing on and into everything.

All who hear about him are inspired by his story and genuine passion for life.  Paul is, without a doubt, our miracle baby. I had to have an emergent hysterectomy 6 months after Paul was born, only to find out that I had severe endometriosis. The doctors said there is no scientific or medical reason why I should have ever gotten pregnant. Paul is a miracle, and is meant for great things in his very bright future!

Jaclyn Frea  is a wife, to Bryan, and a Mom, to Paul her heart warrior. She loves her family, animals and OSU Buckeye Football. She is a PCHA – Ohio Board member, as well as the Communications Coordinator for Congenital Heart Network of Central Ohio.  Jaclyn also volunteers as a wish grantor for the Make-A-Wish Foundation.  In her spare time, she loves to spend time at the zoo, with her family, coloring, and Jaclyn loves makeup and all things beauty related.

Recap – Wellness

When living with chronic illness or caring for a chronically Ill child, it’s important to maintain a healthy lifestyle. PCHA’s Wellness Blog Series contributors offered tips on how to do it!

The Most Wonderful Time Of Year

The Holiday Season is meant to be filled with family and joy. It can also be a time of great stress, especially for families with chronically ill loved ones. In today’s post, Becky Hunt shares her experience with losing a child to CHD as well as managing her own illness, and explains how to de-stress from it all around the holidays, or any stressful time of year.

 

CHD and Exercise

With the brand new year, many of us are making resolutions to better ourselves and our lives. Exercising more is often at the top of the list! This week, Kathleen Baschen, an exercise physiologist at Ann & Robert  H. Lurie Children’s Hospital of Chicago, shares tips on how patients with CHD can get FITT. 

 

Balance

In the latest post in the Wellness Series, Megan Horsley, heart mom and Pediatric Dietitian at Cincinnati Children’s Hospital Medical Center, discusses how to find balance with your nutrition.

 

 

#CHDAware – Heart Month 2018

CHD Awareness Week has come to a close but there are still a few key ways to help us raise awareness through heart month and all year long!


Participate in our Social Media campaign! 

Use your social media talents to shine and join the #CHDAware social media storm

February 7-14, the entire community comes together to help others understand how common congenital heart defects are, the need for research, and access to quality care. At PCHA, our programs serve to educate parents, physicians, and lawmakers spreading awareness all year long, but we love to join in the February Fun as we strive to educate those who may not be as familiar with CHD.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by liking and sharing our statistic infographics. We have a lot to share, this year, so look out for these graphics all month long!

Make it personal – Using the hashtag #CHDAware, add details about your story, your experience, and be sure to Include a message about an aspect of CHD of importance to you. Examples: the need for research funding, advocacy, or support for fellow families. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can turn awareness into action. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Facebook frame – As patients, parents, bereaved families, and providers we are all #CHDAware. Show your support for heart month and CHD Awareness week by adding this effect to your profile picture or video!

Invite others – we can do the work for you – simply guide them to our social media pages.  Ask them to like and follow us. We’ll make sure they STAY engaged! Click on an icon to find us:

Facebook twitter-button iglogocolor

Month-long #CHDAware Challenge 

Join the fun: become a fundraiser and earn great prizes!

This is our only social media fundraiser for 2018 and we need your help!

Our Goal: $20,000 to support our essential programs offering care packages, hospital trainings, patient and family resources and so much more.

Thanks to all your hard work!  YOU are making a difference. We’re just halfway through the month with over 90 registered fundraisers! It’s not too late to join and win some amazing prizes!

Click here to for more information about the challenges, prizes or simply how to set up your fundraising page.

Keep up the great work! Together, we are #ConqueringCHD!


Where in the World is Echo? 

We spy with our #CHDWise eyes…..ECHO!

Echo has been traveling the globe giving knowledge and hope to new CHD families and providers. He’s been spotted in some pretty amazing places! This month, we are going to be featuring some of the fantastic places Echo has been to as he blazes a #CHDWise trail everywhere he goes!

Submit your picture of Echo on your adventures to Echo@conqueringchd.org and we may feature it on our social media pages with the hashtag #ISpyEcho


Success!!

 

We brought back two fan favorites for the first half of heart month and because of you we we sold a total of 126 that raised $1,090 that will directly support the lives of CHD patients and families through our great programs like transparency and public reporting, the guided questions tool, conquering CHD care packages, and the legislative conference.

Shirts will be delivered 2-3 weeks AFTER the campaign closes (feb.14th).

 

 


Gear Up to support heart families!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and morel!

Don’t forget to pick up your very own Echo the Owl! The heart on Echo’s chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

Order your very own Echo the Owl, today, and we will also add one to a care package to be given to someone hospitalized due to CHD. Echo can be Purchased in our online store HERE!

 


Turn Awareness into Action!

Each one of us has a story to tell. These stories make a great impact when told the right way to the right people. Share your story with your representatives.  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!

 

 

 

 

Then, on February 27th, from the comfort of your own home, you can support the effort of 190 advocates who will be visiting their lawmakers on Capitol Hill in Washington D.C. to discuss CHD research funding and this legislation  Stay tuned for ways that you can get involved “off the hill.”


Recap – Arrhythmias and Cardiac Devices

Complications from surgery, scar tissue left behind, and an underlying disease can bring about arrhythmias in CHD patients and lead to need for a cardiac device. Gathered here are the contributions and resources from PCHA’s Arrhythmia Blog Series. 

 

Jarvik: For Smaller Hearts

PCHA’s next series introduces the various Cardiac Devices involved in the treatment of Congenital Heart Disease and the associated conditions. In the first post, Dr. Adachi tells us about the Jarvik for small hearts, a ventricular assist device used to help pump blood through the body.

 

Terri’s Story

Often times, CHD patients face issues with the rhythm of their hearts. In some patients, this can mean additional treatment is necessary, with either medication or a cardiac device. In this week’s post, Terri Elliott, an adult CHD patient, shares her experience with an arrhythmia that led to her receiving an implantable cardioverter defibrillator. or ICD.

 

The Elephant in the Room

With each CHD, there is no certain path, no one course looks like the next, and complications vary widely. Though a patient may have a specific structural diagnosis, different arrhythmias may develop over time, however patients and families are not always made aware of this possibility immediately. That’s why the diagnosis of an arrhythmia may surprise parents and send them for a loop, just when they think they’ve seen it all.  This also makes it difficult for parents to know just how much to share with teacher and other adults in their children’s lives, just as Alison Connors shares with us this week.

 

Bradycardia Explained (Part One)

This week former Cardiac Nurse, Carol Raimondi, provides us with the first of a two-part resource on arrhythmia and the various diagnosis and treatment. Up first: Bradycardia.

 

Tachycardia Explained (Part Two)

New Diagnosis – Baby Shower

When a mom -to-be  receives a CHD diagnosis for her baby, questions and uncertainty swirl. Laura Carpenter shares, this week, how her baby’s Truncus Arteriosus diagnosis affected her perspective on baby showers. 

 

I remember reading an advice column many years ago. Someone was seeking guidance about her struggle to attend a friends baby shower after a pregnancy loss. I remember thinking that was selfish of her to not attend and probably only fed her grief.

Oh how time and life experiences round the rough edges.

I am now the one who hesitates at the thought of attending baby showers, even as I’m most genuinely excited for babies-on-the-way. Sometimes I accept the invitations and I attend. Other-times I forgive myself and excuse myself.Gwenyth, my heart baby was born with a heart defect called Truncus Arteriosus on St. Patricks day in 2010. She passed away when she was two months old. Baby showers are hard for me now.

When I do attend baby showers, it’s not just the absence of my baby that can be magnified, it’s the memory of the baby shower that I didn’t have, that often summons the ever present heartache to the surface.

If I could do things over again (how often I tread this path in my mind) I imagine the baby shower I wish had for Gwen.

If I could do it over again…I would say YES when my friend offered to plan a shower instead of deciding it was awkward to ask people to attend a celebratory event when her survival to birth was uncertain. I would decide to celebrate her life as given – her life as it was, already deeply a part of ours and Gwen already much-loved in our hearts. However, I would not want anyone to pretend everything was okay – but rather to be there with me, to be present and allowing for all the range of emotions that may come at such “type” of a of baby shower. They could be there to witness her story unfolding and her life as given. They would be part of her life story.If I could do it over again…I would use her baby shower as an opportunity to share the details of her diagnosis and begin spreading CHD awareness then and there (this is my hind-site 20/20 feeding my vision, so of course I’m a well-versed CHD advocate at my HeartBaby shower in this scenario). I’d share the stories of new connections I made with other mom’s expecting CHD babies. Everyone would hear about the CHD survivors that live right under our noses and be well aware of the HOPE that exists for heart kids. They would would all leave knowing how underfunded CHD research is and, through my crystal clear, 20-20 hindsight, I’d share a special “HeartBaby Registry” with them which would offer guidance on the “baby stuff” needs of a heat parent.

This special list would help everyone know which baby items would be most useful for hospital life. They would serve to bring a little sunshine and warmth to some of the lonely times caring for a baby in the hospital as I would remember the shower and think about the person who gifted it to us and was rooting for Gwen.

From the unfair vantage point of hind-sight, I wish I had told my friend, YES, please plan a shower. The reality is, my family and friends would have been honored to celebrate Gwen with me, even it was a different kind of baby shower, perhaps a little more heavy and less light and giggly than most. And what’s more – it would have given us one more very special memory of her life to cherish.

 

 

 

My volunteer work within PCHA Virginia this past year has centered around completing our prenatal care package for families like mine, who learn their baby will need open heart surgery early in life. In this “Conquering CHD kit,” PCHA offers guidance for parents regarding what questions to ask their care team, directs them to trusted sources online and shares stories of CHD Warriors that inspire HOPE. There is also a special page, created partly in response to my relentless hindsight about a missed baby shower. With anecdotes and lists, the page offers suggestions on what to pack for the anticipated hospital stay. I hope it will help families get a confidence-boosting glimpse of what caring for a heart baby in the hospital looks like. And, with this in hand, I sincerely hope families facing a prenatal diagnosis will embrace the opportunity to have a baby shower for their heart child and will even find themselves having fun creating their registry, feeling empowered as they know exactly what to ask for as Heart Parents!

http://conqueringchd.org//wp-content/uploads/2018/01/Heart-List.pdf

 

Laura, originally from the Hudson Valley area of New York, lives in Harrisonburg, Virginia where she met her husband, Myers when they were undergrads at James Madison University.  Their heart-healthy kiddos are Lillian and Arthur. Their middle child, Gwenyth was diagnosed prenatally with Truncus Arteriosus. She was born in March, 2010 and had open heart surgery when she was two days old. After about one month of enjoying life at home Gwen passed away from a sudden overwhelming sepsis (Neonatal Alloimmune Neutropenia is suspected in her sudden illness.)  Gwen’s life has inspired Laura to stay involved with the CHD community.  She is the President of the the Virginia chapter of the Pediatric Congenital Heart Association and is passionate about helping parents find strength for this journey, confidence in their role as their child’s advocate and connection with other CHD families for invaluable sources encouragement and education. She teaches art part-time at a small private school and enjoys gardening, hiking and spending quality time with friends and family.

New Diagnosis – Mary Beth’s Story, Diagnosed in Adulthood

We continue the New Diagnosis series with Mary Beth Meyers’ story. Diagnosed at the age of 23, Mary Beth shares how she had to put her dreams on hold due to an undetected CHD. 

 

 

 

In May of 2012, I was a newly graduated young woman, with hopes and dreams to begin working with children, meet my husband, and have a family someday. All that came crashing down the day I was diagnosed with a heart defect. A few months after turning 23, having just earned a degree in Early Childhood Education, I learned that I was born with an undiagnosed Congenital Heart Defect(CHD). My specific CHD is an Atrioventricular Canal defect, which isn’t just one, but rather a group of small defects that include an ASD, a VSD and possible abnormalities of the AV valves(mitral and tricuspid).  Since this defect can only be repaired by surgery, I am now  a two time open heart surgery survivor. I had my 1st surgery in August 2012 and a full mitral valve replacement in May of 2015(pig valve). I will be facing my third open heart this coming Summer.

Every since that sucky diagnosis day, life has been an absolute roller coaster ride. One filled with many fears, unknowns, and blessings. The physical, mental, and financial aspect has been draining, not just on me, but family, especially my parents. I know my parents would blow through their savings and sell everything they owned to keep me alive, but as an adult patient, who is quite aware of how stressful finances can be, there is always that sense of guilt running through my mind.  I have to remind myself everyday to count my blessings and that somehow God provides, not just for me, but for my parents too.

Being a late diagnosis has it’s pros and cons. My childhood was thankfully a normal one, even though knowing about my CHD would have explained all those years of being “tired,” rather than writing them off as laziness. My childhood wasn’t filled with surgeries, multiple hospital stays, doctors appointments, and trauma of not being able to communicate or understand what was going on.

For me, however,  the cons outweigh the pros. Not knowing for so long your heart was in overload for the majority of your childhood and all of your teenage years can add up to some hefty damage. Sometimes waiting can do more harm than good. And in my case, I, along with my parents and care team, wonder if doctors had intervened early on, would I be facing my third open heart surgery in under 6 years. Unfortunately, that’s something we will never find out, but I firmly believe, the earlier intervention, the better the outcome. Of course, it’s not something to dwell on, but rather be grateful that my diagnosis was found in my early twenties, rather than my fifties, or worse, during an autopsy.

Trying to become a young adult after getting through my 1st surgery has been anything but easy. Open heart surgery changes you physically, mentally, and emotionally. You are not the same person. Trying to navigate through life with something you know will never go away and brings a ton of physical and emotional pain can be draining. Not to mention, it’s financially draining. It forces you and your family to make sacrifices in so many areas. That’s not necessarily a bad thing, but when it consumes your whole life, for the rest of your life, it can seem unfair and downright exhausting. It makes you feel like you don’t know where you belong in this world. All your hopes and dreams keep getting delayed, and you wonder, with another open heart around the corner, if they will actually ever come true.

My late heart diagnosis has left me confused, angry, and jealous. Jealous of family and friends building their careers, gaining independence, experiencing marriage and motherhood. The hardest part is realizing, because you survived, that you are here for a reason, yet  you feel like a failure. You feel like a failure at times because you are struggling to become the independent adult you thought you’d be since childhood, having no idea then that your defect existed. Even though a few years have passed since my diagnosis, there are still days where it is hard to swallow the news of this disease. But there is a lot  I cannot change in my life, I can only keep moving forward with a new perspective.

One of my favorite quotes that I’ve come to lean on is, ”Accept the things you cannot change, the courage to change the things you can, and the wisdom to know the difference.”  I had no idea this is what my life would become, but everyday is gift. If you find yourself in a similar situation, surround yourself with family, friends, and a community of patients like you. It has shaped me into a person I’d never imagined I would be, and, now, I couldn’t imagine my life any other way.

 

 

Mary Beth Meyer is a 29 year old, living with an AV Canal Defect. With a late diagnosis at the age of 23, she has since undergone two open heart surgeries. Her most recent was a full Mitral valve replacement. Mary Beth graduated college from Franciscan University in 2011, and is currently pursuing a masters degree in Elementary Education at Holy Family University. She loves being an aunt to two beautiful nieces and  a handsome nephew. She loves her faith, family,  and a good peppermint latte. As the author of Mimi’s Open Heart blog, Mary Beth shares the good, bad, and amazing things about having a congenital heart defect. You can find her on Facebook @Mimi’s Open Heart or Instagram @mimisopenheart.

#CHDAware Fundraising Challenge 2018

Join our #CHDAware 2018 Fundraising Challenge to support  our critical programs that help improve the lives of those living with CHD. 

We need YOU to help so we can reach our goal of $20,000.

All you need to do is register as a fundraiser on our Challenge Page. While the fundraiser will be open all month, much of the activity will be concentrated to CHD Awareness Week.

Complete any one of our amazing challenges and win some pretty great things:

HAPPENING NOW: Launch Day Fun: The first 10 fundraisers who raise $100 after our launch at 8am EST on February 1st will receive a PCHA umbrella.

CHD Week Goodness: Every fundraiser who gets at least 10 unique donations of $10 from 8am EST on Feb 7th through 8pm EST on Feb. 14 will get a PCHA Pint Glass!

The Whole Shebang: The person who has raised the most money at 8pm CST on February 28 will receive one of each of this month’s prizes.

We have a few secret challenges you’ll learn about when they happen, or they wouldn’t be a secret! But one may or may not include a never seen before car sticker!!!

HAPPENING NOW: Lastly, anyone who registers to become a fundraiser and raises $100 or more during the month of February will win an exclusive PCHA t-shirt, designed just for our amazing #CHDAware Challenge fundraisers!

 

Be sure to register as a fundraiser and we will provide you with sample emails, FB posts, tweets, stories, memes, video ideas, and more, to be sure you are successful and bring in all the fun prizes!  But most importantly, every dollar you raise will benefit people with CHD and their families, whether it is through care packages, policy changes, or important resources.  Anyone who donates will be helping to Conquer CHD!

Registering to become a fundraiser takes less than 5 minutes and is as easy as 1, 2, 3!

1. Fill out the online sign up form 

  • Enter your first and last name.
  • Enter your mobile phone number.
  • Enter your email.
  • Confirm you’re not a robot by checking the box
  • Click “Become a Fundraiser”.

You’re officially a fundraiser! You’ll receive an email that will welcome you to the campaign, supply you with the link to your personal fundraising page, and your custom text number (ex. Text CHDAware2018 to 71777) so your supporters can donate to your campaign simply by texting! You’ll also see an “edit my page” button that will allow you to edit and manage your campaign. This link and the email will be titled “Details about your new fundraising registration!”

2. Personalize your page

The last step is to personalize your page.

  • Upload a picture (a selfie will work!)
  • Set fundraising goal
  • Personal message telling people the impact they can have if they give right now.

3. Share, share, share

Share your fundraising page through email, social media and even text to get your friends and family involved.

 

YOU DID IT!

To view the campaign’s progress and check out other fundraisers & donors CLICK HERE

New Diagnosis – One Day At A Time, A Heart Mom’s Story

As we approach Heart Month PCHA begins its series on New Diagnosis. This week, Heart Mom Alexandra Frost shares with us the story of her daughter Emersynn’s  diagnosis in utero and how she learned to take the news and life with CHD day by day.

 

 

It all started when we went for our 12 week NT scan, where they measure the fluid behind the neck. The doctor came into the room and we could feel the discomfort. He said that our baby’s fluid behind the neck was measuring double the norm. This was a red flag for either Down syndrome or a congenital heart defect (CHD). He sent me to get blood work the same day. Ten long days later, I got the results that our baby tested negative for Down syndrome and the other genetic stuff they tested for, and we found out she was a girl! We were so excited and thought we were in the clear since we have no history of CHDs on either side of our family.

Fast forward 8 weeks when we went for our 20 week anatomy scan. When the doctor came in, we got that same feeling. She said, “All organs look good, except her heart. Unfortunately, she has a heart defect which puts you in that 1%.” It was one of the worst days of our lives. My world shattered as I tried to process these foreign words – “congenital heart defect.” They weren’t quite sure how severe her defect was at that point, which is why we were referred to a high risk OB and then a pediatric cardiologist.

When we saw the pediatric cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Once again, my heart sank to the floor after hearing this news. Emersynn has congenitally corrected transposition of the great arteries (ccTGA or l-tga), a large ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. Out of those one percent that end up with a heart defect, .5 – 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition! After leaving the cardiologist that day, my husband and I looked at each other in the car and looked back down at the paper that had a drawing of our baby’s heart. We were so confused and wondered if we would ever be able to understand the anatomy of our little one’s heart. Overwhelmed was an understatement.

 

 

 

 

 

 

 

 

 

We live in Fort Myers, and, unfortunately, the hospitals around here are not equipped to deliver babies with severe heart defects. We were given the choice to deliver in Miami or Tampa. Although Emersynn’s ped cardiologist (who is exceptional) is in Tampa, we decided to deliver in the Miami area at Memorial Regional Hospital (connected to Joe DiMaggio Children’s Hospital). This decision was made through countless hours of research after finding out (this is how I essentially coped with the news). During our research we came across a Facebook page for a boy that has the same defect. I reached out to his mother who led me to a private Facebook group for Emersynn’s particular defect. Only immediate family or the person affected is allowed to join this group. It turned out to be an extraordinary group that helped us tremendously! We found out, through this group, that a top surgeon for Emersynn’s defect was mentoring at Joe DiMaggio Children’s Hospital, and was there about once per month. This made us feel comfortable, as her defect is so rare and there are only a handful of surgeons that are successful in doing the major surgery that she will eventually need in the future.

 

We were told throughout the pregnancy that Emersynn would need a shunt within a week of birth, as they thought she wouldn’t get enough blood to her lungs. She would then need a major surgery called the double switch down the road. I ended up delivering on November 22, 2016 and she was a big baby, which defies odds already! They watched her closely in CICU for three days as her PDA closed. Once it was closed they monitored her saturation. She proved to be miraculous and was sent home on day 4, with no surgery and thriving!

Emersynn just turned one year old and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! This little girl amazes us more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior! Emersynn will need a major open heart surgery in the next few years. The doctors say her body will tell us when it’s time. This is a very risky surgery and hard to put her through when she is currently doing so well. We know she will eventually need this surgery to continue to thrive and give her the best life. Some days, I hardly think about her heart defect, and other days it totally consumes me. It’s something I wouldn’t wish on anyone. However, we wouldn’t change Emersynn for the world. We know that we were chosen to be this sweet girl’s parents, because we could handle the challenge. Through this experience, we have learned to take it one day at a time!

 

 Alexandra Frost currently lives in Fort Myers, FL. She is originally from Long Island, NY and graduated from Villanova University in 2012. Alexandra has been married to her high school sweetheart for almost 2 years. She juggles real estate and being a mommy to a very adventurous one year old heart warrior. Alexandra and her husband are excited for their second baby on the way and know Emersynn is going to make a great big sister!

Lincoln Clay Shockey

 

Our son Lincoln was born on April 26, 2015 after a very eventful pregnancy.  At 24 weeks, we found Lincoln’s CHD, Hypoplastic Left Heart Syndrome, after I developed a placental abruption and a multitude of other complications which put me onto hospital bedrest for the duration of the pregnancy.  He was delivered in Louisville, as scheduled, but was so sick he was air lifted to Children’s Hospital of Philadelphia at less than 24 hours old.  On his 5th day of life, the first day we were able to hold him, he was taken back for the first of three palliative open heart surgeries in order to survive.  He would go on to have his second surgery at 4 months old, and his third at 2 years old.  He has had countless MRI’s, echo’s, sedations, heart cath’s, hospital stays, and the slightest illness could mean life or death.  Although he is healthy as he can be for his condition, one complication could mean our last resort option…a heart transplant.  Lincoln has taught us that no battle is too tough to fight, and he is the reason I advocate passionately for CHD’s.  Medical advances have come so far in just a few short years, but there is so much more that needs to be done for these precious warriors who are born having to fight for their lives, for the rest of their lives.  Lincoln lives in Kentucky (although we’ll always call Philly our second home), with his parents, and 4 older brothers.

Jeremiah Shanks

Jeremiah was born with a congenital heart defect. We found out at our 18 wk ultrasound that there was something wrong with his little heart. After multiple ultrasounds, many echos, transfer to the UK team, & then another transfer to Cincinnati, we gave birth to our otherwise healthy baby boy on August 4th. He was born with transposition of the great arteries, an ASD & a significantly large VSD, pulmonary stenosis, & a cleft mitral valve. We spent his first 2 wks of life in the cardiac ICU where he underwent two heart cath procedures to allow for adequate mixing of the blood in hopes to carry him over until he was big enough for open heart surgery. Within a month, we were back for an overnight stay at Cincinnati Children’s for a blood transfusion & then again the next month for yet another cath procedure to enlarge the stent that was placed prior near birth. The goal was to beef up this baby to 5kg & when he exceeded that & was doing so well, they raised the goal to 6-7kg. His date was set in Dec to have open heart surgery January 22nd. Upon admission to this hospital stay, Jeremiah was 7.5 kg, having exceeded yet another weight goal!

 

His open heart surgery went better than expected! Both cardiologists (in Lexington & Cincinnati) & the cardiothoracic surgeon thought he would have to have a single ventricle repair. We found out during the procedure that the doctor had successfully repaired his heart to two ventricles. Unfortunately, his AV node and SA node would not pick up communication after surgery and after 10 long days of waiting, he went back into the OR for a permanent pacemaker. Jeremiah has a pacemaker implanted into his belly to make sure that his heart functions normally. According to the doctors, this is not a setback nor do I have much negative things to say about it. It’s what his little heart needed. He’ll have just a few limitations but should live an active & healthy life!