Tara Stuttler Ohio
On October 29, 2007, at Wilson Memorial Hospital in Sidney, Ohio, a new life joined our family. We named him Devin and fell in love with him instantly. Unlike when his older brother Craig was born, Devin did not want to eat and just seemed too tired. We thought it was due to the long, exhausting labor and just continued to attempt nursing here and there. The doctors, pediatricians, and nurses all thought he looked well each time they checked him. The next morning, about 18 hours after birth, he was taken from our room to have his picture taken and my doctor said I could go home later that afternoon. So I started packing my bags while Devin was in the nursery posing for his newborn photos. An hour went by and I started to worry because he should have been done a while ago. So I made the short walk just outside my suite to the nursery. I walked in to find my beautiful newborn baby boy inside an infant incubator. My heart sank. I immediately panicked and started asking what seemed like a million questions a minute. I tried to soak up as much information as possible while trying to comfort my baby from the outside of his tiny little capsule-like environment. I heard the nurse tell me that his color was “off” during his photo session and that the pulse oximeter reading was below normal. An emergency mobile unit from Dayton Children’s Hospital was on its way to pick him up. They thought he may have something wrong with his heart, but were hoping it was a false alarm. They assured me that though some cases are serious problems, sometimes they turn out to be nothing. I prayed and prayed and prayed like there was no tomorrow that my baby was just fine. I embraced the nurse that was taking care of me that day as tears streamed down my face. I asked my family to help me grab my bags so we could follow the ambulance.
Once we arrived at Dayton Children’s Hospital, the day seemed to turn from sunshine to dark and dreary. I felt like I was living a nightmare, I just wanted to wake up—I didn’t want this to be happening. We make it up to cardiology and we have to wait to enter. When we get in to see Devin, they wheel in a machine to perform an echocardiogram. The technician takes plenty of pictures and pauses several times in one area. No, no, no this cannot be good, is all I could think. The cardiologist on staff approached us shortly after and asked us to join him in another room. I dreaded what he had to say but couldn’t wait to know exactly what was going on with our baby. He grabbed a piece of paper and a pen and started to draw a normal heart. Then he drew another object about half the size that he referred to as Devin’s heart. He explained to us that Devin had Hypoplastic Left Heart Syndrome, a somewhat rare and very severe heart defect that required immediate surgery, a transplant, or the option of sending him home as is to let it “run its course.” We were appalled at his third option and told him we wanted to look into surgical options. The cardiologist insisted that we go to Cincinnati, which is just south of Dayton, because Dayton was not equipped to operate on him. We said we needed a few minutes to talk to our family in the waiting area.
Our family of parents, grandparents, and siblings were anxiously awaiting news of Devin’s condition. After we informed them and everyone had time to soak it in and react to it, we said it was time to make a plan. We had little time and desperately needed someone with more knowledge in the medical field to give us some guidance other than just the doctors at Dayton. My mother suggested we call my cousin, Laura. She was a nurse at Nationwide Children’s Hospital in Columbus. As soon as my mother told Laura about Devin’s heart defect, Laura told us to make arrangements to have Devin sent to Columbus immediately. She had us write down a few names: Dr. Mark Galantowicz and Dr. Cheatham. Those names were foreign to us and we didn’t even know how to pronounce them. Little did we know then just how significant those names would be to us in the future. Laura said these doctors specialize in babies born with Devin’s complex defect and that people travel from all over the nation, even the world, to see these exceptional doctors. We knew Laura would not guide us wrong, so we took her advice and went to the nurse’s station to have Devin’s care be transferred to Columbus as soon as possible. The nurse called the cardiologist over to help assist in our request. The cardiologist tried to convince us to go to Cincinnati instead of Columbus and that our son was a good as dead if we didn’t take his advice. We were offended by his inappropriate remark, but focused on what was important by responding that Columbus was our choice and we were sticking to it! So they scheduled the mobile unit to transport him to Columbus first thing the next morning. That evening, an A-line was inserted into Devin where his umbilical cord once was, wire leads ran all over him, and monitors beeped around us. We were in a strange and scary place but knew we needed to familiarize ourselves with it so we spent the night asking questions and holding our baby’s hands trying to comfort him as much as we could.
The next morning we said good-bye to Devin so we could get a head start on the road to meet him in Columbus. We exit the cardiology unit and press the down arrow on the elevator. As we wait for it to approach our floor, my emotions get the best of me. I drop my luggage right where I stood. All I remember saying through my gushing tears was, “This isn’t right! We should not be walking out of a hospital without our baby!” We ignored the elevator and continued to comfort each other. We knew we could do this--whatever it takes.
We make it to Nationwide Children’s Hospital in Columbus and realize that it is Halloween. It is usually one of our favorite holidays and we were a bit disappointed that Devin wouldn’t be able to wear costume I bought for him. However, we were more concerned about getting him settled in at the hospital we would soon come to know as our second home. We beat Devin to the hospital, so we took advantage of that extra time to register, become acquainted with where the NICU was, and contact family. When Devin arrived and we were able to see him in the NICU, a weight seemed to lift off our shoulders. We knew this is exactly where we were supposed to be. The clouds of the previous day’s dreariness seemed to lift away as the sun shone through. I knew we made the right choice.
The staff at Nationwide Children’s Hospital was amazing. They helped us become familiar with all the resources that were available to us, including the Ronald McDonald House. Before we knew it, it was time to meet Dr. Mark Galantowicz, the cardiac surgeon we chose for Devin. He recommended either the Hybrid procedure or the Norwood procedure. Though the Norwood was more well-known because it had been around for so long, the Hybrid was less invasive on the newborn as the first surgery, and the doctors that pioneered the procedure were Dr. Galantowicz and Dr. Cheatham. They had special Hybrid suites right there inside the hospital where we were. After about 48 hours of research, we chose what our guts initially told us to—the Hybrid.
On November 5, 2007, Devin had his first staged surgery and it went smoothly. He recovered quickly and we were sent home on November 14, 2007. Once we were home we had bi-weekly visits to Columbus to see his wonderful cardiologist, Dr. Pamela Ro. At each visit Devin had to have an EKG & echo done. He was also visited in our home weekly by one of St. Rita's home health nurses for regular check-ups the first few weeks home then just monthly for his Synagis shots. Toward the end of January we had to start traveling to Columbus once a week to keep a closer eye on Devin since his 2nd procedure was probably going to take place in the near future.
The 2nd (Glenn) surgery was scheduled for March 7, 2008, but they ended up doing another echo that revealed it was better to do a cath procedure to place another stent where there was significant narrowing. So the stent was placed & the 2nd stage surgery was postponed until Devin's heart could show better numbers. Devin’s heart was very sick and he had a rough time recovering from the cath. There were a few times we were afraid we would lose him, but we kept our faith and lifted our baby up in prayer continuously. We were released from the hospital March 18, 2008. That hospital stay was by far the worst we had ever seen Devin have to fight for his life.
We had pre-admission testing for the 2nd stage on April 8, 2008. His surgery was first thing in the morning on April 9, 2008. This 2nd stage was a combination of the Glenn & Norwood. They removed all hardware from previous procedures and re-routed his blood flow. His heart was on the bypass for about five hours. The surgery went well and his heart started right back up. He was quite swollen for a couple days. He ended up staying in CICU until April 14, 2008 when he was moved to a regular room. He recovered very well and was sent home on April 17, 2008. How amazing to say our baby had full, blown-out open heart surgery and was only hospitalized for eight days!!! We have a little fighter and he makes us so proud! All of the prayers everyone sent his way were answered!
Devin had his fontan (the third & final stage) surgery on October 9, 2009. He was 23 months old. He did very well during the surgery and was only on bypass for two very short periods of time. Devin did have a lot of drainage which is what kept us in the hospital so long. He had a chest tube hooked to a drainage box that was a nuisance, but he was able to move around as long as an adult was following him with the box. We were discharged October 21, 2009. But after being home a couple days we noticed he was getting puffy and his torso was bulging so we went to a local hospital and had an emergency x-ray that revealed re-accumulation of fluids. So we were re-admitted into C5 at Nationwide Children’s in Columbus that same day. The chest tube was put back in and he drained the rest of the fluid. He had to spend his 2nd Birthday in the hospital. They did, however, let us go home for two days over the Halloween weekend with the tube in place and a small drainage box. When we returned, they scheduled a cath to be done on November 3rd. They didn't have to place a stent and his pressures looked good. Dr. Cheatham did decide to go ahead and coil off some collaterals while he was in there. We were discharged for good on November 4, 2009. We had a few issues getting him off of the Diuril but adjustments were made and he was eventually taken off of it. It's nice to have the staged surgeries behind us!
The year 2010 flew by and only consisted of a few cardiologist appointments usually six months apart and a simple procedure to complete his circumcision. Though we say “simple” it is anything but that for a heart child. It involved a trip to Columbus’s surgical unit, a cardiac anesthesiologist, and much preparation. Any simple procedure in Devin’s future will have to be handled with care. This is something we are already accustomed to.
2011 came and introduced a new member to the Stuttler family on March 31st—another baby boy named Jude. Devin was thrilled to now have a big brother and a little brother and laughed at our jokes calling Devin the monkey in the middle. We had a regular cardiologist check-up scheduled for May 24, 2011. Devin's father took him because I was not able to leave work that day. I was upset because I have never missed one of Devin’s appointments and felt terrible that I could not be there. Later that afternoon, I received a call at work. They found something in his fontan circuit that they believe to be a blood clot. It is not affecting his flow or any numbers, but they ordered a CT scan for a later date to get a better look to confirm exactly what it is.
In June we took Devin back to Columbus for a CT scan. It ended up revealing a calcified blood clot. The doctors feel it could have been there since shortly after his 2009 fontan surgery almost two years prior. To be safe, they take him off of his aspirin and prescribe warfarin. This required a blood draw to find his base line rate at which his blood naturally clots to determine the amount of warfarin he should take daily. Once the base line rate is found, the medicine is prescribed then he only needs a finger *** to monitor his numbers once a month. It took about a month to get his prescription right, but we made it and he only has to brave a short finger *** monthly. However, his diet must avoid any foods high in vitamin K. Foods such as leafy greens, mayonnaise, canola oil, many green vegetables, and several others are included, and Devin is the type of kid that actually loves those foods. This has been rough for him in that aspect. Devin's follow-up appointments have all revealed no change in the blood clot, which is good.
Devin also still has a moderate-severe leaky tricuspid valve which they will keep an eye on. He's had this since birth so we're hoping it will last him many more years before a repair or replacement surgery is required. So presently, we are watching his blood clot and tricuspid valve. Though future procedures for Devin are guaranteed, we hope they are farther into the future so Devin has a few more years to be a normal kid. We do not like our family torn apart during hospital stays and seeing Devin suffering or trying to painfully recover from yet another surgery. We always have to prepare for the worst and pray for the best! We never know when Devin’s heart will require medical attention, so we thank God for every day that he is with us and functioning well.
Devin has inspired me to make more of an effort to make a difference. I continually reach out to other heart families and offer information and updates on Devin through our family website. In support of the American Heart Association, our team has walked at the Start! Heart Walk in Columbus each year since 2008 as team Devin & The Heartbreakers and I recently became Co-Coordinator/Media Coordinator for Mended Little Hearts of Columbus and have become a contact as a parent advocate for pulse oximetry advocacy for the state of Ohio. This advocacy has put me in touch with some amazing people, and I hope I can be a part of making pulse oximetry screening on newborns mandatory in Ohio. There are many others in support of this and it looks like we could see this happening soon for our state!