Summer’s story begins with two parents overjoyed to have a little girl. A brother who adores animals, but thought a sister might be fun too, and a sweet Chocolate lab that would love her forever.
But soon, that joy had to compete with so much sadness as we began to discover Summer had several things that were concerning. The primary, a Congenital Heart Defect (CHD), Truncus Arteriosis, that required surgery soon after birth at MUSC in Charleston, along with more throughout her life. She and I were monitored closely throughout her pregnancy. And a couple weeks prior to her due date, our family moved down to Charleston to live with my best friend and her family as we prepared for her arrival!
On August 8th Summer was born. She was quickly taken to the Pediatric Cardiac ICU to be closely monitored and cared for by some of the most amazing people in this world. And at just 5 days old, we sent our little baby off for her 1st open heart surgery. Summer did amazing throughout the 8 hour surgery, but as they came off the bypass machine she suffered a severe anaphylaxis reaction to one of the medicines administered. She was in critical condition.
After a few weeks, the doctors told us she was in severe heart failure. Our options were palliative care or attempt a surgery to repair a valve that is the thickness of tissue paper. We chose the latter because of how much faith we had in her care team and knew she was in God’s hands. But to test our faith even more, a hurricane was also coming through Charleston the week of her surgery. So, at around 1 month old, we sent our little girl to have her 2nd open heart surgery during a hurricane praying desperately for good news. After one of the longest days of our lives, that prayer was answered. And after that surgery, she finally began to heal and recover! She was able to come off the vent and we were finally able to hold her. She was a miracle.
Things were going well, but she started struggling with arrhythmias and feeding so it wasn’t until she was about 2 1/2 months old, lots of med changes and a G-Tube surgery, that we were able to come home. I remember feeling so inadequate after all of the care she had received. We were overwhelmed, but joyful all at the same time.
Summer was also diagnosed with club feet, so once we were home, we began that process. Weekly casting for 10 weeks, and a surgery in January, followed by more casting. But that February, we had to pause. Summer got the flu and ended up in the ICU. She was discharged a month later, but came home on oxygen. We had nursing, hospice care, and home therapies that year to support us but it was extremely rough on our family. Summer struggled to come off oxygen, and her lungs were just not able to fight viruses well and the rest of that spring and summer, she was admitted dozens of times to the ICU here in Greenville.
That September, she went unresponsive. I quickly took her to the ER and the team tirelessly worked to save her. She was septic and suffered a brain bleed. And after hours of interventions they were finally able to get her stable. But after a month of being intubated in the ICU, she was sent via Life Flight back to Charleston for another heart intervention.
Our family moved back in with my best friend, we put Aiden into a preschool there so he could stay with us and not be separated again. We worshiped every Sunday and our family began healing. Summer began healing too. Her heart ICU besties were so excited to see our family and they loved on Summer every chance they got! Her heart team did a heart cath once they felt she was stable and were able to put in two stents, which was exactly what she needed to get her off the vent. She was followed by Neuro and they were able to rule out any seizures thankfully, but they would continue to follow her to make sure the bleeding had subsided. After about a month, we were able to come home.
Once we were home again we picked back up on what I like to call her “extra curricular” diagnosis. She still had the casting and would need 2 more ortho surgeries, more casting, plus a few months of her in boots and bars to get her feet corrected. She had also been diagnosed with a Cleft Palate after birth so she needed a major surgery for that along with tubes for her ears. However it would take us a couple of years to complete all of this because of Covid.
Summer is also physically disabled, she is not able to sit or stand on her own (yet) and her developmental range is anywhere from a 3mo old to a 4 year old. So, once we finally got her to a healthier state and checked off the extra surgeries, we really started focusing full-time on her therapies!
Summer gets weekly OT, Feeding, Swim, PT, and Speech. Summer was also diagnosed with a cortical vision impairment (CVI). So we moved her early intervention therapies to the SC School for the Deaf and Blind and have been seeing some amazing improvements in her vision!
She just had another heart cath and stent this fall, and we will travel back to Charleston this month for another ENT/Dental surgery.
Summer continues to be monitored by Cardiology, Neurology, Pulmonology, GI, Dietician, Orthopedics, ENT, Pediatrician, Ophthalmology, Nephrology, Dental and a partridge in a pear tree. But this year we’ve added in more fun for our family, and adapted ways to help get our medically complex and disabled little girl out so she can explore the world! She loves hiking, swimming and trips to the aquarium to see her favorite Hammerhead Sharks! Summer works so hard to do things we take for granted. Luckily she is super stubborn like her momma! Her smile reminds me daily what a gift each day really is.
Thank you so much for reading her story! I post more on her IG page: @theheartofsummerjane