For many couples across the world, the birth of their children marks some of the happiest moments of their lives. Indeed, from the trip to the hospital to the delivery itself, those precious few hours are cherished by the parents. Lesa and Brennan Brackbill can certainly attest to that, having welcomed two new faces to their family. Yet their moment of joy was tinged with sadness, too.
Residents of Hershey, Pennsylvania, Lesa gave birth to twins in April 2018, with her husband watching on. Following the arrival of their sons Caleb and Isaiah, Brennan then had a request for the nurses in the delivery room. He was determined to get closer to his baby boys.
So with that in mind, Brennan asked if he could have skin-to-skin contact with the newborn twins. Initially, the hospital staff were a little skeptical, as they didn’t know if the dad would be able to handle it. Before long, though, he managed to convince them otherwise, leading to a heartwarming moment.
To begin with, Brennan was handed Isaiah for a few minutes, before Caleb took his place. From there, the twins then returned to Lesa, resting upon her chest in the delivery room. However, that brief period proved somewhat bittersweet for the mom and dad, as past memories started to flood back.
Over the course of a person’s life, they will celebrate a number of memorable landmarks. Whether it’s their high school graduation or the time they earned their first job, these moments can be cherished forever. In addition to that, there are some other special occasions that are just as significant.
If a person is fortunate enough to strike up a romantic relationship with someone else, they might experience some incredible periods. For a lot of couples, the biggest moment is arguably their wedding day, as the ceremony marks the next stage in their journey together. But for others, though, the birth of their children trumps that.
In April 2018, married couple Lesa and Brennan Brackbill prepared for that particular step, as the former was pregnant with twins. At the back-end of the month, she finally delivered her sons Caleb and Isaiah, much to the delight of both parents. However, this wasn’t the first time that the pair had welcomed a new face into their family.
Indeed, Brennan and Lesa had been eager to experience parenthood some years before the twins’ arrival, which led to a life-changing moment in July 2014. At that time, the new mom had given birth to their first child, a little girl named Victoria. Unfortunately, it hadn’t been the easiest of deliveries.
Ultimately, Victoria finally entered the world via a cesarean at the hospital. Following that lengthy process, Brennan then recalled what happened next on the lifestyle website Love What Matters. According to the Hershey resident, he needed to step up just a few moments after the procedure was completed.
“Our firstborn, Victoria (or Tori), was born on July 30, 2014, and quickly won our hearts,” Brennan wrote on the website. “Our plan had been to deliver her naturally (unmedicated with no intervention), but that is not how it happened. Lesa ended up having a c-section after 20 hours of labor.”
On that note, Brennan detailed the important role he had to play following Victoria’s arrival. The dad continued, “Because of the epidural, [Lesa’s] arms were numb and she was unable to move them. So when it came time for skin-to-skin [contact] the doctors said she couldn’t do it.”
Brennan added, “I quickly volunteered and held our precious daughter for over an hour until Lesa joined us in recovery. I still tear up a bit here and there thinking about how amazing that experience was! [Victoria] was so calm the entire time as I sang and talked to her.”
With that in mind, this short period proved to be invaluable for Brennan, as he felt an immediate connection to Victoria. “It helped us bond from the very beginning!” Lesa’s husband explained on Love What Matters. “Right then I decided if we had any more kids, skin-to-skin was a MUST!”
Over the next few months, Brennan and Lesa spent a lot more time with their baby daughter, noting her happiness at home. By the start of 2015, Victoria still appeared to be in a good place, as she continued to develop alongside her parents. However, their lives changed forever that January.
“Fast forward five months to January 2015,” Brennan recalled. “Tori became a completely different baby overnight. She was irritable and sounded like she was in pain, she stopped smiling, playing, laughing, etc. It was as if a switch had flipped.” Due to that sudden change, Victoria’s mom and dad then visited their doctor, hoping to find some answers.
Sadly, no one could have predicted what happened next. “Six weeks later [Victoria] was handed a diagnosis that was a death sentence,” Brennan wrote on the lifestyle website. “[She had] Krabbe Leukodystrophy, a terminal genetic disease that Lesa and I unknowingly both carry. She was given a life expectancy of two years or less.”
In the span of a few weeks, Brennan and Lesa’s lives were turned upside down, as they faced an unimaginable situation. But the heartbreak didn’t end there, though. Following Victoria’s diagnosis, her parents went on to receive some more devastating news from the doctors, who revealed something could have been done in the first few weeks of her existence.
Brennan continued, “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 [Victoria] had been screened for Krabbe at birth we could have tried to save her life. Krabbe is treatable if caught early!”
As Brennan previously noted, Krabbe disease is an innate condition that’s passed down to children through their parents. It’s generally true that youngsters start to develop the symptoms of the disorder before they turn six months old, just like Victoria had. The signs can include agitation, uncontrolled twitching of certain muscles and regurgitating.
On that note, Minnesota-based nonprofit academic medical center The Mayo Clinic offered a more detailed description of the condition via a post on its website. “Krabbe disease is an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system,” it read. “There’s no cure for Krabbe disease, and treatment focuses on supportive care.”
The Mayo Clinic post continued, “However, stem cell transplants have shown some success in infants who are treated before the onset of symptoms, and in some older children and adults. Krabbe disease affects about one in 100,000 people in the United States. It is also known as globoid cell leukodystrophy.”
Helpfully, the health website also addresses the cause of the disease. Incredibly, just one “mutant” gene from both a mom and dad can lead to the development of the condition. As a result of that, their child subsequently can’t produce a certain type of enzyme known as galactocerebrosidase, or GALC.
“Enzymes, such as GALC, are responsible for breaking down certain substances in a cell’s recycling center (lysosome),” read the Mayo Clinic post. “In Krabbe disease, the short supply of GALC enzymes results in the accumulation of certain types of fats called galactolipids.” The site explained that it’s these fats that are essential to providing the protective shield around the nerve cells.
However, the website went to explain that having too much of these special fats was actually poisonous for the nerve cells and caused them to break down. As for Brennan and Lesa, they were faced with a nightmarish situation back at home. After the diagnosis, the parents needed to decide how they would approach Victoria’s last few months.
Admirably, Brennan and his wife didn’t want to focus on the negatives, as they tried to remain positive for Victoria. “Given the news, we had a choice to make,” he wrote on Love What Matters. “We could live out the rest of her life in misery and grief, or we could choose joy. And we chose joy. Joy is a choice!”
At that point, Brennan lifted the lid on what transpired in the following months, as he and Lesa made the most of their time with Victoria. Alongside the Love What Matters post, the Hershey resident included some photographs of his daughter from that period as well. Despite her condition, the family continued to take her out on various excursions.
Brennan continued, “Tori’s life, even though cut short, was full of joy. We did 50 bucket list items with her, from simple things to extravagant trips, to make sure we lived as much life with her while we could. As you can see, we didn’t let medical equipment stop us.”
In addition to the family outings, Victoria’s mom also looked to keep a record of everything on social media. “Lesa blogged about every adventure and shared them on Tori’s Facebook page with her 14,000 followers,” Brennan revealed. “We did everything we could to give her the best possible life while we had her with us.”
Sadly, Victoria finally succumbed to her Krabbe disease in March 2016, over a year on from the diagnosis. Brennan and Lesa’s daughter was just 20 months old at the time of her passing. Unsurprisingly, the couple were devastated by the loss, with the father summing up their feelings during an interview with People magazine.
“The whole thing was terrible,” Brennan recalled to the publication in June 2018. “We were taking care of a little girl for 19 months. It was weird because she just wasn’t there any more. We wouldn’t be able to hold her any more or talk to her.” With that in mind, Victoria’s parents needed to make their next big decision.
Much like before, Lesa and Brennan could’ve allowed themselves to be consumed by grief. However, they refused to let that happen, as the former shared some words of wisdom with her husband. From there, he then relayed that message back in his Love What Matters post, before making a touching point.
Brennan wrote, “As Lesa said, ‘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!”
Going forward, Brennan and Lesa received some fantastic news in September 2017. During that period, the couple found out that they were expecting identical twins, but the positives didn’t end there. The dad-to-be confirmed, “We were overjoyed by the fact that they do not have Krabbe – they aren’t even carriers!”
In the spring of 2018, Lesa delivered her sons Caleb and Isaiah at the hospital. Following the birth, Brennan looked to replicate what he did with Victoria after her arrival. The Hershey resident was desperate to initiate skin-to-skin contact with the babies, but he faced a minor obstacle in the shape of the nurses.
After Brennan reassured them that he could handle the task, he was given the green light. The father wrote on Love What Matters, “Isaiah came out first. And as soon as they cleaned him up, I unzipped my gown to my waist and was given my very unhappy boy, but he immediately calmed down as I talked to him.”
Brennan continued, “I only had [Isaiah] for about ten minutes this time because it was Caleb’s turn, as they looked over Isaiah some more. Same deal with Caleb. Mad until I took him, and he calmed right down!” His work didn’t end there, though, as he and Lesa kept hold of the boys later that day.
From there, Brennan touched upon another important point in his Love What Matters post. As it turned out, Victoria’s death played a key role in his desire to hold the twins following their birth. Indeed, in keeping with the couple’s new mindset, they wanted to enjoy every minute they could with their kids.
“We can no longer hold our precious Tori, so holding our boys from the very beginning meant so much more,” Brennan explained on the lifestyle website. “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!”
Off the back of that, Brennan spoke about what he and Lesa are trying to do now. He wrote, “I wanted to add that our primary advocacy is for Newborn Screening for Krabbe, the disease which took our daughter’s life. If caught at birth it is treatable, but only six states screen for it… New York, Ohio, Kentucky, Tennessee, Illinois and Missouri.”
Following that bombshell, Brennan then had one more stat up his sleeve to conclude the post. He added, “We are fighting in our state for all babies to be screened equally, because in Pennsylvania only ten diseases are mandatory and the other 26 are left up to the hospital. Your zip code determines life or death [here] if born with one of these genetic diseases.”