We found out on September 11, 2004, that our unborn child had a congenital heart defect called Hypoplastic Right Heart Syndrome. Basically, this means that Gabe’s right ventricle never fully developed, so he only has 1 pumping chamber in his heart. This defect is corrected with a series of 3 open heart surgeries—one at birth, one at 6 months old & one between 2-5 years old. We immediately researched hospitals, surgeons & cardiologists & determined that we wanted our child to be born at the University of Iowa Children’s Hospital (now Stead Family Children’s Hospital) in Iowa City. We were living in Prairie City at the time so made many 1 ½ hour trips back & forth to Iowa City for prenatal visits. While we were very thankful to have time to prepare for what was ahead for our unborn child, knowing that your child is going to face some serious medical issues as a child really takes all the ‘fun’ out of being pregnant. We enjoyed the holidays as best we could & spent lots of time with our 18 month old son, Garrett. Our son, Gabe Benjamin, was born on January 1, 2005. We were blessed that Gabe did not need to have the first surgery as expected. We spent a week in the hospital making sure that Gabe was stable enough to go home & learned all that we could about watching for signs that our son needed extra medical care.
Thankfully the next 6 months were relatively uneventful. We cared for Gabe as we did our other son & really got to enjoy all the ‘regular’ newborn milestones. We had weekly & monthly cardiology appointments & prepared for the surgery ahead. Gabe had a heart catheterization in mid-June to give the doctors all of the necessary information to prepare for surgery. When Gabe was 6 months old on July 7, 2005, he underwent his first open heart surgery, the bi-directional Glenn. We were again fortunate to have only a 5 day hospital stay & again were able to take our sweet boy home. Gabe was hospitalized for an infection in his incision in August 2005 for another week but other than that, we enjoyed a ‘normal’ life. Gabe continued to have regular cardiology appointments because we knew another surgery was in his future. Fortunately, he met all of the milestones expected of any healthy child. We were very blessed!
Gabe was ready for his next open heart surgery, the Fontan, when he was 2 ½ years old. We were living in Wayland at the time which is about an hour south of Iowa City. We had just welcomed our 3rd son, Riley, in February of that year so, needless to say, we had our hands full. Gabe had his 2nd open heart surgery on May 1, 2007. Gabe was recovering well until he suffered a stroke on May 8th that left him completely paralyzed on his left side. We spent the remainder of our time in the hospital undergoing several tests trying to determine the cause of the stroke so that we could keep it from happening again. We were lucky to have several family members stay with us during this time to help out with Garrett & Riley so we could stay with Gabe. After a month, we were able to go home & continue physical & occupational therapy to help Gabe fully recover.
This year will mark 11 years since Gabe’s stroke & open heart surgery! We can hardly believe how fast the time has gone & how far Gabe has come during that time. Gabe slowly regained the majority of the mobility in his left side & was walking again 2 months after the stroke. We have continued both physical & occupational therapy weekly since that time as Gabe still has a significant delay in his fine motor skills with his left hand & foot. We only see cardiology once a year & Gabe is considered very stable heart-wise. We hope that continued medical advancements will make another surgery in his future unlikely; however, most children born with similar congenital heart defects often need surgical intervention again in their teens or 20s. Time will tell & until then, we continue to pray for our amazing boy.
We moved back to Prairie City in 2009. When Gabe was just finishing up 4th grade, he experienced his first visible seizure on the playground after school. Fortunately, my husband & I were there to witness it (God’s hand for sure!), so we knew exactly what had happened & how to prepare for future seizures. After a short hospital stay to monitor him & determine where the seizures were coming from, we were able to go back home. Gabe’s seizures are a side effect of the brain injury he suffered at age 2 ½ & only originate in the right hemisphere of his brain (where the stroke affected him). After 2 years of trying different combinations of medication that would only control the seizures periodically, we were referred to Mayo Clinics for evaluation for a brain surgery to eliminate the seizures entirely.
As parents who have watched their young son endure so much, signing up for yet another surgery didn’t appeal to us. After a lot of praying, research & numerous questions asked of the medical team at Mayo, we agreed to the surgery. On March 20, 2017, Gabe had the 1st of 2 brain surgeries. The 1st surgery placed an internal EEG directly on his brain in hopes of pinpointing the exact area where the seizures were stemming from so that the medical team could do a resection of that area & keep the right hemisphere intact. The data collected showed that the seizures were too widespread, so the hemispherotomy was performed on March 22, 2017. Normally, this surgery would leave a healthy person totally paralyzed on the left side of their body, similar to what Gabe experienced after his stroke. Because Gabe’s stroke damaged much of that right hemisphere, he noticed some weakness especially in his left hand & foot, but was minimally affected. After only 9 days in the hospital, we were able to go home! This surgery does create a complete visual field cut on the left half of both of his fields of vision. After more physical & occupational therapy & getting glasses, Gabe has adapted beautifully to this limitation.
Gabe is now 13 years old & in the 7th grade at Prairie City-Monroe Middle School. He is truly an amazing boy with an incredibly happy personality & a wonderful zest for life. This year he has been the manager of both the football & basketball team & has a huge love of comics, puzzles & reading. He also loves hanging out with his siblings, Garrett (14), Riley (10), Selah (6) & Blakely (3). Last spring, Gabe chose to go to Disney World on a Make-A-Wish trip where our family made memories that we’ll cherish forever. While our son never chose to be a heart warrior, he chooses to embrace the special life he’s been given & for that we are incredibly blessed.