OUR STORIES
Ethan’s Story
Molly’s Story
Paul’s Story
Tommy’s Story
Gabe’s Story
 Ethan’s Story
Born: October 2004
Heart Condition: Transposition of the Greater Arteries
Parents: Jeff & Polly Rames
Friday the 13th... We all laugh about it, or blame any small problem on it. For us, it became the worst day of our lives...
My pregnancy followed the same course as my two prior ones had—no complications and I felt fine. We went in for our 20-week ultrasound believing we would see pictures of our third child and would send copies to our family. We brought our two children, Jake (5) and Haley (4) so they could see pictures of their new sibling. At the end of the ultrasound, the tech asked us to return again in four weeks so they could get another view of our baby’s heart. She reassured us it was routine and they just wanted to make sure everything was okay. I had a gut feeling something was wrong. Maybe it was my experience being in the medical profession. My husband tried to ease my apprehension, but the feeling wouldn’t go away.
The day arrived and we were in the ultrasound room by 9 a.m. Our ultrasound tech, Diane, chatted with my husband and I but continued to stare at the black and white screen for over an hour. She excused herself for a second and when she returned I was introduced to the perinatologist. I knew of him because I had a friend who saw him for a complicated pregnancy. She eventually lost her baby. My heart sank and my stomach did flip-flops. He sat in his chair and moved the wand over my belly. They pointed and muttered and pointed some more. It seemed to last for hours. Our baby was being difficult and did not want to show its front side, so we were told to go to our regular appointment and then come back to see if the baby would flip over. Sure enough, once we came back the baby was on its back and they were able to get a good view of his heart. The news was sickening. We were told there was an anomaly and that they were going to schedule us for an immediate echocardiogram with a pediatric cardiologist. They explained it would give a detailed picture of our baby’s heart and a diagnosis for the heart condition.
We waited two hours for that appointment. I tried engaging in small talk with my husband and attempted to choke down some lunch with no success. When the time came, I could hardly walk. The medical staff were especially nice and we were directed to the room for the echo. After the procedure, we were led to a room to wait for the pediatric cardiologist to talk to us. She entered with a diagram of the heart and started to draw. "This," she explained, "is what a normal heart looks like...and this is what your baby’s heart looks like." Our child was diagnosed with Transposition of the Great Arteries or Vessels (TGA/TGV). She explained that our child would need a surgery...one that was not available in South Dakota. They would have to do a switch of his pulmonary artery and aorta since his oxygenated blood was not being delivered to his organs or brain. If the surgery was not performed, our child would not survive. After shedding tears and dealing with our situation, we were given options as to which hospitals to choose. We narrowed our decision to two choices: Minneapolis Children’s hospital or Mott’s Children’s hospital in Ann Arbor. With two children, we were anticipating our decision would be Minneapolis since it was closer, but things change!
We decided surprises were no longer a desire for us and had the whole realm of genetic testing done to rule out any further anomalies. Everything came back negative. A wave of relief overwhelmed us. We learned we were having a son and named him Ethan, a name which means "strong." Ethan’s growth was monitored carefully and as we came down to the last seven weeks of my pregnancy, our perinatologist discovered I was dangerously low in amniotic fluid. If the fluid levels dropped any lower, Ethan could shear against his umbilical cord and could be at risk for depriving himself of nutrients and oxygen causing cerebral palsy. I drank and drank and drank fluids for the next week and my fluid appeared to be improving. By the following week, however, my amniotic fluid was down to almost nothing and we scheduled an induction five weeks early. I had done my research during my pregnancy and had discussions with a superior surgeon by the name of Dr. Bove in Ann Arbor, MI. We decided this is where Ethan needed to be after his birth since he would also have a prematurity complication. Our perinatologist, cardiologist (Dr. Stomato), and Dr. Bove were all comfortable with having Ethan delivered at Sioux Valley Hospital and we would then fly out after a few days of getting Ethan stronger. The cardiologist would do the catheterization after his birth. In this procedure, a small wire would be inserted in his groin and would travel to his heart to open a hole call the patent ductus arteriosus. This duct closes after birth, but Ethan’s needed to stay open so that oxygenated blood could mix with the blue blood in order for his body to get vital oxygen and help him survive. During labor, I developed placenta previa and started bleeding. My doctor kept a nurse with me full time and had me continue with normal labor. We all thought I would need to have a caesarean as this complication occurred, but Ethan’s heart rate remained strong and delivery was normal.
October 27, 2004: As Ethan was about to make his debut, I noticed for the first time how many people were standing in our room. There were over 20 people getting ready to help keep Ethan alive and it was such a scary feeling knowing it was going to take this whole team of people to keep our son alive. He was born at 3:01 in the afternoon. He made one cry and was silent. He was grey. He was so thin and he looked lifeless. They started respirations on him immediately and I never got the chance to hold him like they had promised. He was sicker than they anticipated and I got to touch his hand briefly as they whisked him away from me.
The heart catheterization did not go as the cardiologists had anticipated and we were told he would be flown out that night once he was stabilized. Apparently the hole could not be torn as big as they had wanted and they were afraid to push too hard and rip more than they wanted. I was not to be the one to fly with him. My husband ran home to gather some things. I would fly out the next day once my epidural wore off.
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 Molly’s Story
Born: February 2008
Heart Condition: Ventricular Septal Defect (VSD) with smaller Atrial Septal Defects (ASD)
Parents: Dave & Jeannie Johnson
When Molly was born, there was nothing to immediately indicate she had a serious heart problem. Her ultrasounds hadn’t shown anything, and her birth weight was great—8 lbs 11 oz. But about a week after I got her home, I began to notice she was breathing rather rapidly and not eating as voraciously as my other five children had.
I took her to the doctor for her two-week checkup. She was barely up to her birth weight. They checked her over, listened to her heart, and couldn’t find anything wrong. But she just continued to get worse. She would sleep all the time and was barely eating 3-4 ounces at a time. Just as worrisome was the fact that she just wasn’t locking onto our eyes like she should be at that age, and she always seemed to have a concerned look on her face. Ultimately, we found out that was because she was using all her energy to breath.
I knew something was wrong, so I took her in a week before her two-month checkup. Her weight had gone from the 90th percentile to the 20th after four weeks. Our doctor listened to her heart and his face went white. A chest x-ray revealed an enlarged heart. She was admitted to the hospital that day, and our cardiologist, Dr. Stamato, did an echocardiogram. The results showed an enormous hole in her heart taking up the majority of the septum.
Things progressed rapidly from there. Molly stayed in the hospital for a week, then we headed to the Mayo Clinic. We came to learn that in the grand scheme of heart surgeries, this was a relatively easy procedure. What became troubling was the size of the hole. When we were in Sioux Falls, the hole was the size of a dime. At Mayo, they said the hole was the size of a nickel. In fact, they thought it could take two surgeries because there wasn’t much septum there to which to attach a patch.
Molly went into surgery the day we were to have left on a cruise—how strange! After the surgery, our surgeon, Dr. Burhardt, said it was one of the largest holes he had seen—the size of a quarter. Because they had to stop the heart to perform the procedure, he expected Molly to be on extended bypass for several hours. She proved everyone wrong.
He was able to attach the patch in one surgery. As soon as the patch was in place and it was time to switch her to the extended bypass machine, the other side of her heart began to beat like it knew exactly what to do. She skipped extended bypass completely and started trying to breath on her own two hours after surgery, so her breathing tube came out two days early. All the doctors and nurses started calling her Miracle Molly.
Molly is now gaining by leaps and bounds, and is back into the 90th percentile. We’re still watching the smaller ASDs, called Swiss cheese holes. Some have already closed, and the rest should hopefully close on their own over time. She just celebrated her first birthday, and we won’t have a checkup with Dr. Stamato for another year.
So, though the first year was kind of a blur, we are celebrating Miracle Molly every day.
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 Paul’s Story
Born: February 2004
Heart Condition: Complex Congenital Heart Disease
Parents: Randy & Deb Antonsen
As we awaited the birth of our third child, my husband and I had no idea what lay ahead. We had no clue during the pregnancy that Paul would be born with serious heart problems. As soon as he was delivered, however, I knew something was wrong. He was gray and listless.
The neonatal intensive care team came in right away, and soon took him away. The next morning, we discovered he had a condition known as severe aortic stenosis. Paul and I got on an air ambulance and flew to Iowa City. The day after his birth, they ballooned open his aortic valve. But that was only the beginning of Paul’s story.
Dr. Stamato, our cardiologist, monitored him closely, and at four months it became apparent that the balloon was not going to be effective. When he was six months old, we went to the University of Michigan for open heart surgery. Paul underwent a Ross/Kono procedure, where his pulmonary valve is moved to the aortic position, and his pulmonary valve is replaced. The procedure proved very successful.
At the same time, Paul was dealing with another ongoing problem—severe pulmonary hypertension. The surgery improved this condition to some extent, but then his pressures started to rise again. We put him on an experimental medication for the problem, and he remains on it today. But we also kept asking our cardiologist if there was something else that could be done.
After researching the condition thoroughly, she sat down with us in May 2006, and laid out three options. First, there was long-term IV therapy, which would require him to be hospitalized for a long time. The second was a heart transplant. The third was to head back to Michigan, where the same surgeon who had done his previous surgery would attempt a brand new procedure.
An MRI had revealed that Paul had quite a bit of scar tissue on his heart. He also had a mitral valve that was regurgitating. During the new procedure, the surgeon would attempt to strip off the scar tissue and repair the mitral valve at the same time.
Again, the operation was a success, and we found out later that he was only the second patient to receive the surgery at Michigan. Though his hospital recovery was a bit rough, once he came home to familiar surroundings he really turned around. His pressure, which was around 140 at its worst (20-30 is normal) is now staying in the 50s.
Paul is now an active boy, but we suspect our journey isn’t over yet. Dr. Stamato has noticed that his left ventricle, which should be shaped like a football, is gradually looking more like a basketball.
In May, he will have a heart catheterization to determine whether more needs to be done on the mitral valve.
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 Tommy’s Story
Born: April 2006
Heart Condition: Shone’s Syndrome with multiple left heart obstruction
Parents: Dean & Jessica Schmeichel
It was in the wee hours of the morning a week after his birth when we learned Tommy had heart problems. We almost lost him on the ambulance ride to the emergency room, and by the time we arrived to Avera McKennan, he was in a Code Blue. The trauma team worked to stabilize him while trying to narrow in on a diagnosis. Then, Dr. Sami Awadallah arrived and immediately made the initial diagnosis of critical coarctation of the aortic arch. Once he was stabilized, he was moved to the PICU where he had to prove he was stable enough to handle the fixed wing plane ride to Children’s Hospital in Omaha, NE.
After two days in the pediatric ICU, Tommy underwent the first of what would turn out to be seven procedures to this point. We found out after this first surgery what would prove to be true over and over again—he’s a speedy-recovery kind of kid. He did really well, and we were only down there five or six days.
We came home and everything was fine. In fact, we’ve never been able to tell when he has a problem. He is a normal, very active young boy. We never find out until we go in for his regular appointments that he’ll need another procedure.
So far, Tommy has had four heart surgeries, an angioplasty for recurrent coarctation, and two heart “caths.” His three surgeries following the initial surgery have been: repair subaortic membrane in November of 2006, a Modified Konno Procedure for recurrent subaortic membrane in July 2007 and most recently, an aortic valvotomy, aortic root augmentation, subaortic resection, closure of a VSD, and right ventricular outflow tract resection and patch augmentation in January 2009 (Whew!).
We have been prepared for future surgeries, but when that would happen is uncertain. What we do know is that when he’s not in the hospital, he’s just an amazingly normal little boy. We focus on enjoying all the good days and pray he remains strong and healthy.
One thing we’ve learned from all of this: don’t be afraid to ask questions. If something doesn’t sound right, dig into it. By going the extra mile, you might save your child’s life.
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 Gabe’s Story
Born: September 2006
Heart Condition: Transposition of the Greater Arteries
Parents: Troy & Sherry Long
Unlike other parents who discovered their child’s heart condition after they were born, we had time to prepare before Gabe’s birth. We went in for our standard first ultrasound kind of excited because my husband wanted to find out what we were going to have. This time it seemed to take a long time. When the doctor came in, we knew something was up.
Our cardiologist, Dr. Stamato, confirmed our doctor’s diagnosis—transposition of the greater arteries. They also saw a large hole in the heart, which was actually a good thing in light of the other problem. It was a shock, and we had to let it all sink in. But Dr. Stamato reassured us that the healthiest the baby would be, would be inside me, so we had time to get ready.
I went online and learned about the condition. I had also been referred to another mom who had gone through the same thing two years before. Our cardiologist suggested we go to the University of Michigan, because they have a lot of experience with these surgeries.
Gabe was born a week early. Everything went very well and he was a healthy 8 lbs 10 oz. We stayed in the hospital for four days, then flew out to Ann Arbor. The next morning, we had surgery.
The surgery went wonderfully well. One thing about transposition—it’s one of the most complicated conditions, but also one of the most fixable. We expected to be there four weeks, and we were headed home by the middle of week three. Now, he’s so healthy that I can barely remember how concerned we were about keeping Gabe isolated after he came home. Sometimes, I almost feel badly because I really don’t think about his condition.
carepage name: gabriellong
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