Welcome to the family website of
Alan, Tara, Craig, Devin & Jude Stuttler!
We created this website to keep everyone informed of Devin's progress and what our family has been up to.
This is our story... Devin was born Oct. 29, 2007 weighing 7lbs 11oz with a severe heart condition known as Hypoplastic Left Heart Syndrome (HLHS) which most consider as having half of a heart. He was diagnosed Oct. 30, 2007 after being transferred from Wilson Memorial Hospital in Sidney, OH to Children's Hospital in Dayton, OH. (Thank goodness the nurses at Wilson Memorial noticed his color was not right and used pulse oximeter to screen before we were sent home!) They did the first echocardiogram at Dayton Children's Hospital that revealed his condition. Upon our request, he was then transferred to Nationwide Children's Hospital in Columbus, OH on Oct. 31, 2007. We chose Nationwide Children's from information provided to us by our cousin, Laura, who is a nurse there. She made sure we were aware that we had more options for Devin's heart surgery in Columbus than we would in Cincinnati (where Dayton wanted to send him). At Nationwide in Columbus we were offered the Norwood or the Hybrid procedures. After much consideration we chose the Hybrid procedure since it is less invasive for his first surgery as a newborn. This three-stage option is surgically performed by Dr. Mark Galantowicz. The caths are done by Dr. Cheatham. These two doctors actually pioneered the Hybrid procedure and work as a team in the Hybrid suites at Nationwide Children's Hospital. (See below for more information.) Devin had his first procedure done when he was just one week of age. He recovered beautifully and we were finally able to take our baby home on Nov. 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 and echo done. He was also visited in our home weekly by a home health nurse from St. Rita's (Nancy) for regular check-ups the first few weeks home, then just monthly for his Synagis shots. (Synagis helps protect against RSV which as a heart baby, Devin is at high risk for.) Toward the end of January we had to start traveling to Columbus once a week to keep a closer eye on Devin since his second 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 and 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, but we were released from the hospital 3/19/08. Thank goodness they didn’t go ahead with the surgery at that point!
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 1-2 days. He ended up staying in CICU until 4/14/08 when he was moved to a regular room. He recovered very well and was sent home on 4/17/08. 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. However, after being home a couple days we noticed he was getting puffy and his torso was bulging, so we went to a local hospital (St. Rita's) and had an emergency x-ray that revealed re-accumulation of fluids. We were re-admitted into C5 at Nationwide Childrens in Columbus that same day, October 24th. 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 :( But they did 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 Nov. 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 did well. It's nice to have this all behind us! Devin does still have the 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.
Ronald McDonald House of Central Ohio
DON'T FORGET TO VISIT OUR BLOG!
Hypoplastic Left Heart Syndrome:
Hybrid Approach
This picture illustrates what is done for the Hybrid procedure.
For more information on the Hybrid procedures please click HERE
It's My Heart. (2011). Hypoplastic Left Heart Syndrome (HLHS). Retrieved from http://www.itsmyheart.org /chd-information/chd-heart-diagram/hypoplastic-left-heart-syndrome/
