Adelyn is a feisty and tenacious three-and-a-half year from Dawsonville, Georgia, where she lives with her parents, Cat and Jeff, and big sis, Autumn. Adelyn loves getting tickled, light up toys, and music. This month’s “Bravery Knows No Size” t-shirt design is inspired by Adelyn who maintains a joyful spirit while facing each day with bravery.
Every purchase in September will go toward the cost of a screened in back porch that will allow Adelyn time to have time outside, something that is not currently possible because of her extreme sensitivity to light.
In 2019, Cat Leopard celebrated her fortieth birthday. Residing in Charleston, South Carolina, with her husband Jeff and their daughter Autumn, the family held hopes of giving their daughter a sibling. However, their hopes were dimmed when doctors told Cat that she was experiencing secondary infertility, making it unlikely for her to conceive.
Several months later, an unexpected surprise brightened their lives: Cat found herself pregnant! As time swiftly passed, the family found themselves in the midst of an anatomy scan appointment, the moment of revelation for their baby’s gender.
“I was excited to have a baby in ‘my old age’ and we were even more excited when we found out that Autumn would soon have a baby sister in her life. We were ecstatic as a family, but then the doctor came in with a sad look on her face,” Cat shares.
The medical team shared with the couple that three concerning indicators had emerged: the baby exhibited clenched fists, possessed a solitary umbilical artery (SUA), and displayed a choroid plexus cyst in the brain. Initially dismissing the significance, Cat later turned to the internet to search for these terms. Her search yielded a disconcerting result as the top entry read “Trisomy 18 – incompatible with life.”
Reflecting on that time, Cat shares, “I went into shock. We had a more advanced ultrasound scheduled and honestly, I was waiting for the worst. The ultrasound ended up confirming this fear and showed that our baby had multiple heart defects and was believed to have Trisomy 18. I lost it then. I didn’t think she was going to make it. To make it worse, the doctors immediately informed us that we had two more weeks to get an abortion. Terminate or comfort care if she was born alive; those are the options they gave us.”
For Cat and Jeff, terminating the pregnancy wasn’t an option so they ended up being transferred to the Medical University of South Carolina. Immediately, the family was met with a team of doctors and they started to come up with a birth plan.
On December 17th, 2019, baby Adelyn entered the world and she was full of life. But there was a problem – she had four heart defects that needed fixing for her to live. The family moved from the NICU to a cardiac unit and, after six days, they went back home with hospice care. Being at home made them even more determined to keep going, especially with all the support they received for taking care of Adelyn.
By the time January came around, Cat was given the green light to start teaching fitness classes again. The family was excited to get back to normal life until the unexpected arrival of COVID-19, which turned the family’s world upside down yet again. The regular appointments with the hospice doctors and cardiologist, scheduled every two weeks, came to an abrupt halt due to the pandemic’s impact. With COVID-19 sweeping through, their sources of assistance and support vanished, leaving the family isolated and anxious.
During this time, Cat started to notice a peculiar gurgling sound coming from Adelyn. Lacking medical background, Cat felt helpless in deciphering its meaning.
One night, Adelyn’s breathing became notably strained. As her breathing grew increasingly labored, a doctor on the phone advised Cat to dial 911. Acting swiftly, Cat and Jeff reached out to their closest friends, who kindly stepped in to care for Autumn.
The response was immediate; the paramedics arrived promptly on that morning. Once at the hospital, the medical team diagnosed Adelyn with a congenital diaphragmatic hernia (CDH), an unusual case where the condition doesn’t manifest until after birth, occurring in about 10% of instances. The unsettling sounds Cat had heard were attributed to Adelyn’s intestines migrating into her chest cavity. Surgical intervention was deemed necessary, a procedure that ultimately saved her life.
Adelyn proved herself a resilient fighter, demonstrating her worthiness and compatibility with life. It was during this time in the emergency room that the authorities issued a lockdown order due to the pandemic. Reflecting on that time, Cat shares,
“They did the shut-down order while we were in the ER. We were literally the only ones in the ER. It was a ghost town. We were there for a week without any human contact. That began my downward spiral. That’s when I started to fall apart mentally.”
In the summer of 2020, the family moved to Georgia to be closer to Cat’s family and regain their strength from the whirlwind of events they had experienced. In October 2020, Adelyn had open heart surgery. The cardiac surgeon informed the family that while he has done this several times, it is ultimately unknown how Adelyn will recover because of her Trisomy 18. Ultimately, as the doctor admitted, Adelyn showed everyone just how resilient she was. Eight days following the surgery, she returned home.
After Adelyn’s heart surgery, things were progressing smoothly. However, a recent development had brought pulmonology to the forefront as a concern. Over the past year, Adelyn kept getting sick with Rhinovirus, causing her to go into respiratory failure.
In January 2023, Adelyn was admitted to the hospital and was intubated for over a month. Several times, the family was informed that Adelyn had a difficult airway which meant in the case of an emergency, intubation would be complicated. Recognizing that this difficulty may increase as Adelyn grows older, doctors have advised that a jaw surgery be considered to enhance the accessibility of her airways.
Reflecting on their journey, Cat shares, “At one point, I never thought Adelyn would make it but here we are, on our way to celebrate her fourth birthday. She’s the sweetest little snuggle bug. She absolutely lights up a room. She’s full of life, joy and energy.”
This road hasn’t been easy. No rare journey is. While on the way, Cat and Jeff have fought endlessly to ensure that Adelyn is given every possible opportunity for a high quality of life.
“I have to advocate for her all the time. Unfortunately, some doctors don’t treat her with fair care. When she was three and half months old, we incidentally found hip dysplasia. Doctors told us that there was no need to put her in a brace because of her life expectancy. Wouldn’t they want to give her the best quality of life regardless of medical stats? In the face of pushback, I have found myself telling doctors that I don’t want their opinions, I want options. Having options have saved Adelyn’s life several times,” Cat shares.
Between the push-back and help of unsung heroes in the medical industry, Cat has been able to transform her grief to help others,
“To face my grief, it helps to talk about it. I’ve personally been able to help so many people walk this road because it is very scary and shocking. So many families who are given the same diagnosis are told to terminate. I believe that’s why we go through things, to help others. We may not have been ready for a week, month or year, but eventually, we found the strength to extend a helping hand to others who are on this road. Every human life matters.”
Today Adelyn is a joyful, feisty and tenacious three-and-a-half year old girl who loves getting tickled, snuggling, light up toys and music. With every person she comes into contact with, she exudes this light that reminds everyone that she is compatible with life. A beautiful reminder that yes, every life matters.
Time to get loud shouters!
Throughout the month of September we will be shouting loud for Adelyn!
So click here to shop now where every purchase in September will go toward the cost of a screened in back porch that will allow Adelyn time to have time outside, something that is not currently possible because of her extreme sensitivity to light.
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