Brennan Brackbill and his beloved wife Lesa from Pensylvania became parents for the first time back in 2014. Their adorable daughter Victoria was welcomed to the world after no less than twenty hours of labor via a c-section.
During the birth, Lesa’s arms were completely numb because of the epidural, but doctors told the parents that skin-to-skin contact was necessary. With mom unable to fulfill the obligation, dad Brennan was more than happy to volunteer.
He held Tori on his bare chest for over an hour until mom Lesa was able to join them.
The parent says that the skin-to-skin experience was definitely something special and will always hold a special place in his heart.
“I still tear up a bit here and there thinking about how amazing that experience was! She was so calm the entire time as I sang and talked to her. It helped us bond from the very beginning! Right then I decided if we had any more kids, skin to skin was a MUST!” he wrote.
Tragically, the Brackbill family received terrible news five months later.
From one day to the next, Victoria was in constant and severe pain. The infant no longer smiled or wanted to play. A couple of weeks later after plenty of doctor’s consultations, the heartbreaking diagnosis came.
Victoria suffered from Krabbe’s, a rare and fatal genetic disease. Both Brennan and Lesa then learned that they were carriers of the disease. The doctors at the hospital gave her two years to live, at most. There are no words to describe how devastated and heartbroken they were.
“To say we were devastated was an understatement. Dying is not a word that should describe anyone’s six-month-old baby. Even worse was the news that if she had been screened for Krabbe at birth we could have tried to save her life. Krabbe is treatable if caught early!”
Brennan and Lesa decided to make the most of out Victoria’s life and wanted her to have a joyful life for whatever time she had left. They compiled a bucket list of fifty things that they’d absolutely wanted to do. They lived their lives to the fullest and made both small and large trips together.
In March 2016, Victoria passed away.
‘The depth of my love for my daughter is not measured by the number of tears I have cried, but rather by the life I choose to live in her absence.’ We choose a joyful life knowing that we will see her again in Heaven someday!” mom Lesa said.
In September of 2018, the couple was expecting identical twins.
They immediately screened for Krabbe’s and luckily, the kids weren’t even carriers of the disease. Isaiah and Caleb were born without complications, and dad made a promise to himself years ago that he now wanted to keep.
He wanted to have skin-to-skin contact with his newborn boys to honor Victoria.
Brennan was afraid that the staff would find his suggestion somewhat weird, but he explained why this was so important to him and everybody in the room thought it was absolutely heartwarming.
“‘Look, I don’t wanna be pushy. It’s your OR,” he told the medical staff. “However, this is very important to us because of our daughter. I got a big wing span and I’ll go shirtless under my OR garb if I have to.’ They quickly agreed that would work.”
Dad held Isaiah for ten minutes and immediately managed to calm him down. Both parents were having skin-to-skin contact with their newborn babies and a photographer was present to capture and immortalize this beautiful moment. After a while, it was Caleb’s turn.
Having these skin-to-skin moments means so much to Brennan and Lesa after they treasured every single moment with Victoria.
“We can no longer hold our precious Tori (short for Victoria) so holding our boys from the very beginning meant so much more. We treasure every moment with them because of her. Tori’s loss taught us to find good in everything and it has certainly amplified our joy!”
The couple now wants to raise awareness of Krabbe’s disease and is advocating for newborn screening because the condition is treatable if caught early.
Currently, only six states in the US are screening for Krabbe’s and it depends on the hospital whether or not screening takes place.
“I wanted to add that our primary advocacy is for Newborn Screening for Krabbe, the disease which took our daughter’s life. Your zip code determines life or death in PA (and in the U.S., really, since each state screens for different things) if born with one of these genetic diseases. It’s our passion and mission.” the couple concluded.
What a heartfelt and warm story!
Please SHARE this with your friends and family.
