Caleb Sams

After what appeared to be a picture perfect pregnancy, we were so excited to head to the hospital for our first child, Caleb, to be born.  This day, which began with excitement and joy, would turn into a roller coaster of emotions.

After hours of labor, it was apparent that Caleb was in trouble. His heart rate kept dropping.  Finally his heart rate dropped and would not come back up.  I was rushed back to do an emergency cesarean. When he was born, Caleb’s oxygen saturation never went above the 60s. A normal person’s oxygen saturation is usually above 95.  I kept asking to see him and the nurses kept replying, “we just need to pink him up a little.”  As naive new parents we accepted this explanation.  However when they finally showed him to me, they told us something was wrong and he would need to be taken back to the special care unit.  After a couple of hours of trying to diagnose the problem, it became clear the complication was related to Caleb’s heart and he would need to be transferred to Cincinnati Children’s Hospital.

Caleb was brought to me in an incubator where I was finally able to touch his hands and feet.  While I tried desperately to soak in these brief moments with him, the transfer team explained to us that something was wrong with his heart and that he would require open heart surgery most likely within the first week of his life.  My husband then went with our son, while I had to remain at the birthing hospital.  At Children’s Hospital they diagnosed Caleb with a Congenital Heart Defect called Transposition of the Great Arteries.

Only three days later our sweet newborn son had open heart surgery to save his life.  Kissing our son and sending into an operating room with doctors and nurses we had only just met the in the last couple days was one of the most excruciating moments of our lives.  After hours and hours the surgery was finally complete.  Caleb did well in the surgery and recovered quickly with very few complications.  

Looking at our son now still amazes us sometimes.  He has needed some extra help in areas because of developmental delay and he does have a couple complications with his heart that his cardiologist is monitoring.  But over all Caleb is a typical little boy.  He plays basketball, loves playing outside, and can tell you anything you want to know about his video games.  Our miracle boy fills our lives with joy and laughter.  He has changed our lives forever and reminds us every day to focus on what is truly important.

Ruby Schupbach

Ruby Jane Schupach _ SmalAt 24 weeks pregnant, we learned that our 4th child had a congenital heart defect – we were diagnosed with Pulmonary Atresia with VSD. We decided to transfer our care to C.S. Mott’s Children’s Hospital after the initial diagnosis, as we are located in Lansing.

Four days before we were scheduled to be induced at Mott’s, my water broke in the middle of the night, so we rushed to Sparrow and awaited meeting our newest addition. Ruby Jane was born on October 23, 2015 and weighed 6lb 3oz. When the doctor said “It’s a girl” we started crying- I had wanted another girl to name after my beloved Grandma and we had 1 girl and 2 boys already. Ruby spent the first 3 days of her life at Sparrow in the NICU because they did not know how to take care of her, and because she was born on a Friday, we had to wait until Monday to be transferred to Mott’s. We did not get to hold her until later in the evening on her birthday, and that was extremely difficult. Her brothers and sister only got to meet her through Facetime until we got to Mott’s. 

Ruby spent the first week of her life at Mott’s for observation and then we were able to go home and let her just be a baby. At one month old, she had her first open heart surgery by Dr. Romano to place a shunt in her pulmonary arteries to help them grow. We only had to stay in the hospital for one week before being discharged. At 5 months old, she had a brief scare and we were rushed to Mott’s for observation and a heart cath. It was then determined that she needed a larger shunt, so we were scheduled for our next open heart surgery 3 weeks later. Ruby has had 2 heart caths and she is scheduled for another heart cath at the end of January. For the moment, we are at a standstill and just waiting for her to grow so she is ready for her full repair. 

Ruby is a little behind in her milestones, but overall she is doing great. She just started walking and she loves ice cream! Overall, we are so amazed at how strong she is, just like all heart babies. There are not enough words of thanks to Dr. Romano, Dr. Goble, or any of the other doctors and nurses at Mott for saving our baby girls life.

Ava Petz

Ava PetzThis is Ava. After an exhausting pregnancy, we were excited to welcome her on February 17, 2013. The joy was short-lived, as the nurse heard a heart murmur during her exam. My husband and I each held her for a few minutes and then the nurse took her to the nursery to be checked further. She never came back. After what seemed like hours I had my husband, Marc, go there to see what was going on. He came back and said that they were still working on her. I immediately had a terrible feeling that something was very wrong. On my way to recovery from the delivery room, my nurse took me to the NICU to see Ava. She was hooked up to many lines and cords and had an oxygen hood over her head. Her oxygen level was only in the upper 70’s despite being on the oxygen. My visit there was a blur but I do remember a very angry Ava kicking her feet as the nurse was trying to poke her foot for a blood draw. It was overwhelming and scary.  Around 3 am, Dr. Grifka came into my room and told us that Ava had Pulmonary Atresia with Intact Ventricular Septum as well as an Atrial Septal Defect.  Her right ventricle was small and her Tricuspid valve was small and malformed.  It was absolutely devastating.  We had no idea that anything was wrong during the pregnancy.

 

She was airlifted to University of Michigan Mott Children’s hospital right away the next morning and had her first open heart surgery at 3 days old. After almost 4 weeks at Mott’s we were home! She had a bumpy road after coming home. She developed an infection in her incision, formula and reflux issues, as well as tubes in her ears at 3 months. But she has shown her strength and feistiness from the very beginning.  She had her second open heart surgery at 13 months and is now thriving. She will be turning 4 soon and you would never know she has a CHD.  She is full of LIFE, energy and spunk.  She definitely keeps me on my toes and does not let her CHD define her!

Owen

Owen was born on July 16, 2012, a healthy baby boy. He passed all his newborn tests and we were both sent home with the elation of new parents.

After a few weeks, I noticed that nursing was getting quite difficult, as Owen would nurse for only a few minutes, then fall asleep. As soon as I would burp him, he’d wake up and cry because he was hungry. I was literally nursing him every 45-90 minutes.

I had a gut feeling that something just wasn’t right. I took him to see our pediatrician and she discovered he was not gaining any weight, approaching failure to thrive. She suggested I give him a bottle of pumped milk after nursing and come back in a week, which I did, and he had gained over a pound! At that point, we just assumed I wasn’t making enough milk for him.

Our pediatrician then did a once over on him, since we were so close to his 6 week well child check up. It was then she heard a slight heart murmur. It was so slight she wasn’t even sure she heard it, but she insisted that we go see a pediatric cardiologist.

Miraculously, we were contacted by the cardiologists office the very next day, asking if we could come in due to a cancellation. We decided to go in, thinking this would be a quick visit. Well, we sure were wrong! After an EKG and an ECHO, it was determined that Owen had aortic stenosis and coarctation of the aorta. It was so severe, they couldn’t detect a pulse on the bottom of his feet!

We were immediately referred to Motts Children’s hospital in Ann Arbor, MI and surgery was scheduled for 5 days later. We were in shock as we headed to Ann Arbor, but somehow we both survived the 5 hour open heart surgery. He had the Ross procedure done to correct the stenosis. We were told that his current conduit pulmonary valve will need to be replaced again around his 5th birthday.

We are so very grateful to Dr. Ohye and his team, as well as the nurses at Mott’s for saving Owen’s life, and putting up with crazy, uptight parents full of questions every 5 minutes! So far, Owen has had a great life- full of energy and not showing any signs of slowing down! He has his yearly cardiologist appointment in February, where it will be determined when or if he will require another open heart surgery to replace his conduit pulmonary valve.

Caleb Dougherty

Caleb Dougherty 1

We found out that our fourth child was going to be born with a heart defect when we learned that his twin had miscarried. Caleb was diagnosed with Tricuspid Atresia and Double Outlet Right Ventricle that resulted in a hypoplastic right ventricle. Caleb was born at U of M Mott Children’s Hospital and had his first surgery at two days old. Things were pretty rough the first week and it was decided that he needed another surgery to replace a shunt a shunt that wasn’t working for him. One week later, he got some new plumbing. After the second surgery, he was stable, but still unable to come off the ventilator. It was determined that the left side of his diaphragm was paralyzed, so the next week, he had surgery to hold the left side of his diaphragm down. He was finally able to come off the ventilator, but he was still in heart failure. After about two months in the hospital, it was determined that Goldilocks needed another tweak to his shunt. The first one was too small, the second was too big and the third was just right. We were able to go home 10 days after downsizing his shunt.

Caleb did very well with his second stage surgery at 5 months old. We struggled with feeding issues, but were finally able to eliminate the NG tube when he was nine months old. He rocked his Fontan surgery at 2 1/2 years, coming home in just 7 days. We joke that he is getting better at having heart surgery.

Now, Caleb is doing amazing! He is a very strong, active and happy six year old. He loves dirt, mud, trucks, and destroying things. He is in kindergarten and loves gym and recess.

Ethan Kolodzinski

EthanK

When our twins were born, it wasn’t ideal timing. Labor started at 39 weeks, so we knew they probably wouldn’t need NICU, but we were moving into a new house that day. As we drove to the hospital, friends and family descended on our place to move us, so we figured we’d have the babies, and be home by the next night. We thought we’d leisurely deal with the crazy mess of a move over the next couple weeks. We were very, very wrong.

When the boys were born, Lucas was fine, but Ethan didn’t pink up. We were able to hold him for a total of about 10 minutes before he was rushed up to the NICU. He was found to have a hole in one lung, which they were able to resolve, but his condition didn’t improve. After four hours of trying everything they could, the staff suspected a more serious problem than they could treat, even with a Level III NICU. When he was 8 hours old, he arrived at Children’s Hospital of Wisconsin under suspicion of a heart defect. He went straight to the Cardiac Intensive Care Unit, where he was quickly diagnosed with an obstructed supracardiac total anomalous pulmonary venous return. At 3:30 a.m. and only 11 hours old, our brand new baby was wheeled away for emergency open heart surgery. If he had not undergone the surgery when he did, he only would have survived a few more hours.

Ethan’s defect is rare, and not one that is easily diagnosed before birth, so it was like a bomb going off in the middle of our lives. None of our other children had ever had any kind of serious illness or surgery, so we were completely unprepared for something like this. He spent two weeks in the CICU, and another week and a half on another floor. Those were the hardest three and a half weeks of our lives. It was gut-wrenching to sit next to Ethan, unable to hold him, while snuggling his perfectly healthy twin. His siblings desperately wanted him to come home, and it broke our hearts to tell them over and over, “Not yet.” The moment we walked out of that hospital with both our boys is one we will never forget.

Outside of weighing less than his twin, and scars he totes, you’d never know what a rough start Ethan had. The boys are 18 months old now, and we cannot imagine what our, and especially Lucas’s life would be like without him. It is a miracle how we have gone from being hours shy of losing him, to him being able to live a virtually normal life. Half of our dynamic duo wouldn’t be here, if not for the skills of Drs. Jim Tweddell and Mike Mitchell, and the rest of the amazing cardiac team that Children’s has assembled.

We are so incredibly blessed to live when, and where, there was the knowledge and technology available to save our sweet little boy.

Adam McDade

Adam McDade

I will never forget hearing my husband ask the doctor “Why is he purple? Why isn’t he breathing?” immediately after Adam was born.

He was our third child, the other two were born healthy babies and we had no reason to believe anything would be different with Adam. However, he was quickly taken out of the room for testing. Within 6 hours of being born Adam and I had both been discharged and were heading to UF/Shands so that more testing could be done. Before they transported Adam they brought him into the room while he was in his mobile ICU. This little boy who I had not yet been able to hug and kiss looked very peaceful and content but the tubes, wires, bandages made for such an unexpected scene. Inside I kept thinking “Everything is going to be fine, the staff is just being extremely thorough but everything will be fine. He probably has a small hole in his heart, I’m sure we’ll be sent home with medicine and the hole will close on it’s own.”

Five hours after arriving at Shands, two doctors sat us down. “Your son has a severe heart defect.”

Oh, those words.

Those words were so heavy.

They told us Adam had tricuspid atresia. His tricuspid valve never formed and sub sequentially his right ventricle had never formed.

“Is he going to die?”
“Will we ever take him home from the hospital?”
“Will he ever meet his older brother and sister?”

Of course these questions immediately overwhelmed me, although I was too scared to consider asking. After the long discussion Adam and his anatomy all I could ask without being scared of the answer was “What advice can you give us?” As one doctor stared blankly I will never forget how the other popped in “You’re going to have three kids, you will love them all the same, one will just have a different heart.” And with that response I was immediately filled with hope. Hope that Adam wasn’t going to die, hope that we would take him home from the hospital and hope that he would meet his brother and sisters.

Adam was blessed with great anatomy as far as TA babies are concerned, he was able to skip what is typically the first of three procedures. On October 22, 2014, four days old, Adam was discharged with no oxygen, no medicine, nothing. We had weekly cardiology appointments and the plan was for him to have his first open heart surgery around 4 months. During this waiting period Adam thrived, he was doing a good job putting on weight and staying healthy.

At 14 weeks old he had his first open heart surgery, the Glenn. There were ups and downs but after just 6 days he was discharged. The surgery was tough, the days and nights post surgery were even harder. However, all of that was finally behind us and we were excited to live life with surgery behind us and Adam in a stable condition.

He will have another open heart surgery, the Fontan, when he is about 2 years old.

We feel so honored to be Adam‘s parents, this little guy is truly amazing.

Christopher Memoli

Growing up with a Rare Congenital Heart Disease-Christopher Memoli is a survivor of a major heart defect known as Congenitally Corrected Transposition of the Great Arteries (CCTGA). He had his first open heart surgery at 19 years old and his second open heart surgery at 44 years old. Despite the challenges of his condition, he enjoys a full life and is an inspiration for thousands of individuals facing challenges in life. Christopher graduated from Boston University. He is now a successful community development financier in New York City with a deep commitment to philanthropy. He resides with his wife and two children in Westchester County, New York.

Christopher maintains a fierce determination and positive attitude to conquer all the difficulties he encounters. He is a second-degree black belt karate, an avid golfer, a talented drummer and a loving father and husband. He is also a member of the Adult Congenital Heart Association.

​In addition, Christopher is a passionate author revealing his experience dealing with a heart condition since his early childhood. He tells his story through the life of Harry, offering an empathetic and inspirational voice to those faced with adversity. Please check http://www.harrysheart.com or http://www.fastpencil.com/publications/7269-Open-Your-Heart-to-Harry An illustrated children’s book series by Christopher Memoli and illustrated by Adrienne Riso. In his first book “Open Your Heart to Harry”, you will meet Harry, a seven year old boy who has recently learned that he was born with a major heart defect. He always had difficulty in keeping up with his friends when playing physical activities and now he is beginning to understand why. Join Harry on his journey as he deals with first learning of his heart condition, functioning within his peer group and overcoming the challenges he faces being a cardiac patient.

Jacob Kilby

Jacob Cropped

I want to introduce you to an amazing young man who will change the way you look at the world.

Jacob Kilby is a young, 19 year old local San Diego surfer who is facing a major health challenge. You often hear about many children and adults that are battling cancer or diabetes, but congenital heart defects seem to be few and far between. Heart disease is a major problem for both the new, young, and mature people of the world. Many times when you do hear about unhealthy hearts it’s in reference to a person who has lived many years and perhaps did not treat their heart as good as they should of. Those stories that start with a newborn baby who will have his first open heart surgery at the age of 5 days old are not plastered all over the media. I want to make a difference for the San Diego community and possibly beyond, by educating and promoting organ donation awareness through the story of Jacob Kilby’s heart.

Jacob was born with Hypoplastic Left Heart Syndrome where the left side of his heart did not fully develop. This is a rare condition that is one of those congenital diseases that we don’t know how or why develops in a certain fetus. We can’t blame it on how a woman treated her body or what she did or did not eat while pregnant. It’s an unfortunate circumstance that happens and Jacob was born on Sept. 8 1995 with this disease. He was born strong and ready to take on the four open heart surgery attempts at fixing his heart, all of which failed. Jacob was very lucky to receive a life-saving heart transplant in 1998 that saved him just in the nick of time.

Jacob has lived a wonderful life. He was able to do almost anything any other boy his age could. Despite the daily doses of anti-rejection meds and the numerous doctor visits, Jacob sailed through school and was liked by everyone. His family adores him and treasures him as if he were a diamond. His smile shines so bright that he truly must be a treasure. So, the news of his need for a new heart came as a devastating shock to all of us, including him just a few months ago.

As the days have passed, I have learned a great deal about the world of organ transplantation. I learned that Jacob is on the wait list at a stage “2” where he really has no chance of getting a new heart. Those who receive organs are those who are on the list the longest and those who are the sickest. So, I guess things haven’t changed in that respect in the 17 years that he’s had his donor heart. His family watched his frail little body diminish and lose oxygen right before our eyes. And here we are again.

The amount of organs available for transplant is not even closely comparable to the amount of people on the wait list in need of an organ. There are currently 123,000 people nation-wide on the national organ transplant wait list. Eight people die every day waiting for an organ that will never come. Millions of families wait in agony every day, never knowing if their loved one even has a future.  Please help us create more opportunities for more futures for people with congenital heart defects like Jacob Kilby.

Aunt Charity

Jack Radandt

Jack 5 Jackson was born on Easter Sunday, 2001.  We brought our perfect 8lb 6oz baby home from the hospital and enjoyed two days with our new little one.  All seemed well; Jack was a wonderful, healthy baby.  At least that’s how it appeared when we were discharged from the hospital.

Things went well for the first several days at home.  However, on the evening of his fifth day of life he felt cool to the touch, became fussy and wouldn’t nurse.  I knew something was wrong when he began making a funny noise with every exhale.  Jack wasn’t improving, so I woke my husband Jason and we decided we needed to take Jack immediately to the emergency room.  Never could we fathom the journey we were about to embark upon. A journey that would last, not just days, but years, and now we know, the rest of his and our lives…

After several minutes of trying to save our baby, they told us his heart was severely compromised and asked if we wanted pastoral care, obviously insinuating they believed our child could die.  At that moment we realized it was very serious.  He was baptized in the emergency room right before the transport team came to take him to Children’s Hospital of Wisconsin.

There, we were told he had a very complex congenital heart defect; Hypoplastic Left Heart Syndrome. This meant his left ventricle was severely underdeveloped.  He would need several open heart surgeries to reconstruct his heart.  Because he had such severe physical trauma when he was just five days old, his organs needed time to recover.  This created such intense instability in Jack that they had to prolong the life-saving heart reconstruction surgery until he got stronger.

We were overwhelmed with this news, with equipment, monitors, tubes and lines.  It is a life no parent should have to go through, but it was now our life.  The hardest thing as a parent to accept was they couldn’t just “fix” him and he would be fine; he would have to deal with this his entire life.  Finally, at ten days old, Jack was ready for the first stage of reconstruction.  He recovered well and successfully had all three reconstructive operations by the time he was three years old.  Jack 3 While each surgery was a struggle for our little boy, he triumphed through each one and became stronger.  Other than daily medications and bi-annual cardiology visits, Jack lived a very normal life for the next 8 years.  Most people were surprised to know he had congenital heart disease let alone a very complex, life-threatening one.  While Jack was restricted physically (i.e. he couldn’t play tackle sports and fatigued seemingly earlier than other children), he excelled at school socially and academically.

Eleven years later our life was again to become a roller coaster.  At a routine clinic visit, we were told there was a change in his echo and that Jack’s heart was failing.  He didn’t really have any symptoms of heart failure so once again; this came as a complete shock to us all.  The news was much harder to process, accept, and adapt to this time because we had an eleven year old who was very aware of what was going on.  At lunch after that visit he asked us if he was going to die and also what percentage there was that he could die.  It took everything in me not to scream and sob to answer his questions.  From that appointment on, Jack’s deterioration was rapid, as his heart was failing quite quickly.  Within a month we were admitted to the Cardiac Intensive Care Unit (CICU) at Children’s Hospital of Wisconsin.  A few days later, they told us he would most likely need a heart transplant. He was put on the heart transplant list shortly thereafter.

Every day in the CICU I watched him getting weaker.  I was afraid he would over exert himself doing simple daily tasks like walking, showering or eating.  After one tough day, I admitted to myself that maybe it wasn’t God’s plan for him to make it through this. I was watching him fade away.  Every time I looked at him I would try to memorize his expressions, his smile, his hands and the sound of his laugh…everything about him.  Preparing myself that memories might be all I would have.

After two months of trying different medications and therapies, Jack continued to deteriorate physically.  Mentally however, he was as sharp as ever.  He was well aware of what medications he needed, always had questions for the doctors and kept up on his homework.  However, it was eventually decided that Jack needed more support for his failing heart.  The physicians caring for Jack decided to place a Heartware Ventricular Assist Device (HVAD) in him. The HVAD is a mechanical pump implanted in the heart to help blood flow in people with weakened hearts.  This device was necessary to bridge the time until a donor heart was available.  He was the first single ventricle child in the United States to have this device and second in the world. It was terrifying to know this was the first time they were placing this device in a child with Jack’s physiology, but there was no other choice. We had to place Jack in the best position possible to accept a new heart when one became available.

Jack 1Jack successfully had the HVAD placed on December 23rd.  He was slowly recovering from surgery when we were informed that a donor heart was available for him. He was so excited that he cried.  All he wanted was a normal life and this was his ticket home. Shortly thereafter, we received horrible news—it was too risky for Jack to take that heart because he had developed a large amount of antigens during surgery.  The hardest part was delivering that news to a little boy that just wanted to go home.  He was devastated. The
emotional blow was overwhelming.

The next day, they began therapies to try and lower his antigen levels.   As Jack continued to recovered they began talking about sending him home on the VAD–another first.  Jack 6After two months in the CICU with the device, Jack was able to come home.  We cared for him at home and had frequent visits to the hospital for immunosuppression therapy and clinic.  Jack thrived being home; he gained weight, grew taller, and eventually went back to school.  Three months after he was discharged from the hospital we received a call that there was heart for Jack.  I reluctantly asked how likely we were to accept this heart and was told it was a negative cross match (a perfect match).  On May 20th Jack received his heart and went home eleven days later.  He is doing great and even joined the basketball team, something he was unable to do before.

Life in our home has returned to normal.  A “new normal” where Jack is able to function better than he ever has.  Although he will be on medication for the rest of his life, and we now live at a bit of “heightened” sensitivity or awareness as we adapted to Jack living with a new heart, we are thankful every single day for every single breath he takes.

Jack 2