Gabriel’s Hero Heart
Gabriel was born on March 12, 2014 a perfectly healthy newborn, or so we thought. When Gabriel was just 24 hours old the nurse was doing routine tests and the Pulse Oximetry Test results were not good. He was taken to the nursery for monitoring and additional testing and eventually was transferred to UVA Medical Hospital. We were told he almost didn’t make it, luckily he did!
After arriving at UVA where more tests were performed it was determined he has a congenital heart defect called, Hypoplastic Left Heart Syndrome. Hypoplastic Left Heart Syndrome, or HLHS is a heart defect where the left side of the heart is so underdeveloped it practically does not exist, nor function.
We were informed Gabriel would need open heart surgery, and not just one but 3. This was a complete shock to us, just a few hours before we thought we had a healthy newborn. Then we were being told our baby needed heart surgery. Parents today often find out during pregnancy if their child has HLHS – yet we were not aware of Gabriel’s diagnosis, which made it that much harder to comprehend.
He had his 1st surgery “The Norwood” on Tuesday, March 18, 2014. This was the hardest and longest day of our lives. Gabriel’s recovery was amazing and he was able to come home on Friday, March 28, 2014 just a week and a half after having major open heart surgery!
Gabriel received his 2nd surgery “The Glenn” on August 1st, 2014. He was discharged on August 9, 2014. After his 2nd open heart surgery, Gabriel just never made any advancements. He stayed little in size (not gaining any weight) and he wasn’t making any progress in physical therapy. On January 20, 2015, he was admitted to the hospital to have a NG Tube put in to help him with his weight issues. What was suppose to be a 2 day stay turned into over 2 weeks. He was finally discharged home, but, was only home for 1 week before we rushed him to the ER at UVA where they admitted him on 2/9/15. On Thursday, February 12, 2015 he went to the heart cath lab where they proved without a doubt that Gabriel needed a new heart (he coded and they had to use shockers on him).
The doctors started the process that day to have him officially listed for a heart transplant. On Thursday, February 18, 2015 he was officially listed on the National Heart Transplant waiting list. On February 20, 2015 he took a turn for the worse and had to be intubated and closely monitored in the PICU.
On Tuesday, March 3, 2015 Gabriel had surgery to have a tracheotomy, gtube, and new PICC Line put in. He did extremely well during surgery and later that day his cardiologist informed us that they had accepted a heart for Gabriel! He received his new “hero heart” on Wednesday, March 4, 2015!!
Gabriel has had many many additional surgeries, and hospitalizations. After one of his heart cath procedures he developed a staph infection which caused him to have many strokes and resulted in permanent brain damage.
Despite their circumstances, Gabriel’s family celebrated Gabriel’s 3rd birthday in true monster truck fashion! His cake was provided by Sugar Angel Tiffany Belk with Tiffany’s Sweets N’ Treats in Locust Grove, Virginia. The family shared, “We can’t express in words how so very appreciative we are. Tiffany truly blessed our son and our family with her generosity!”
Today young Gabriel is now in Speech Therapy and will have an upcoming MRI at the Children’s National Hospital in DC. This will be his one year follow up visit with his neurosurgeon. If his MRI looks similar or better than last year’s the doctor stated he will no longer have to be seen, so his family asks for prayers that all goes well.
Good Luck Gabriel from your Icing Smiles family! To keep up with his progress, follow his Facebook page.