A St ry
1 Peter 3:15
Thr ugh
Pictures
Born at Magee &
Transferred to CHP’s CICU
Abby Joy was born August 19, 2021 at Magee Women’s Hospital of Pittsburgh in the middle of a worldwide pandemic. During pregnancy she was found to have a heart condition and possibly some brain issues, so she was immediately transferred to Children’s Hospital of Pittsburgh’s Cardiac ICU.
Abby Joy was born August 19, 2021 at Magee Women’s Hospital of Pittsburgh in the middle of a worldwide pandemic. During pregnancy she was found to have a heart condition and possibly some brain issues, so she was immediately transferred to Children’s Hospital of Pittsburgh’s Cardiac ICU.
Even though her Mama (and Papa) were in the room at the time of the emergency, God gave her mom a sense of peace that God wouldn’t save her from heart surgery only to have her pass away from a cardiac arrest. Receiving peace from the Lord during unbelievable circumstances is a theme that would happen many times throughout her life. The next day she was transferred up to the Level 4 NICU to work through other issues.
There is a beautiful program called ‘Beads of Courage’ that children with long hospital stays or complex conditions can participate in. A bead can be earned through every needle poke, scan, surgery, etc. It is a visual way a child can later remember and retell the details of their bravery. Please share about this program with families you may know that would have a child who is eligible.
Abby Joy’s bead journey has three phases: NICU, Oncology, and final ICU stay which can be viewed in detail in the image. She only collected beads during in-patient stays (not clinic visits, scan days, etc.) The length of her combined strands is over 25 feet (and each glass bead is less than 1 cm). Abby Joy’s beads have been used to tell her testimony, to decorate a Christmas tree and were displayed at her celebration of life service.
Beads of Courage
Abby Joy & her strands of many beads
After layers of genetic testing the team determined she had Osteopathia Striata with Cranial Sclerosis. This meant her bones were incredibly hard (could chip diamond instruments in the OR), and many of her unique features and symptoms could finally be linked. This included a cleft pallet, finger syndactyly, double bone in a curved finger, low set ears with partial hearing loss in one, holes in the heart, higher disposition to certain types of cancer, etc. Her genetic condition originated mosaically (meaning it didn’t necessarily come from either parent) and this diagnosis helped everyone know how to best plan her care moving forward.
But in your hearts revere Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.
3+ Months in NICU
Trials & Triumphs
Abby Joy continued to baffle the medical team with why she could not be successfully extubated after subsequent tries. She had a heart catheterization to close the PDA (stopped blood from flowing between the sides of the heart), but that wasn’t enough. After exhausting all the other options, it was determined a tracheostomy would be needed as well as a g-tube for nutritional needs. Many nasal-gastric feeding tubes moved out of place, and the day before the other planned surgery it was discovered she had an intestinal malrotation that would also need to be addressed while her abdomen was open. This ‘three for the price of one,’ was her major intervention while in the NICU.
She would be moving forward with a long list of specialists as well as the need for in-home nursing care to be established so she could be monitored 24 hours a day. In Pittsburgh, complex trach/vent babies are often transferred to The Children’s Home before going home so the family can learn the unique care needed and to build a home nursing team. She left the NICU with her own graduation ceremony of nurses and staff cheering for her as she was wheeled to the ambulance for transport.
Abby Joy’s Graduation &
Transfer to Children’s Home
The Children’s Home
Arrival & Family Meeting
Upon arrival at The Children’s Home it was a flurry of new faces and new equipment. During this time she began labored breathing and her parents had to jump in and bag with oxygen while determining what was wrong with the new ventilator they hadn’t seen before. God intervened once again to save her brain or heart from damage in the midst of an emergency situation.
Abby Joy finally got to meet her big siblings on Thanksgiving Day. (They weren’t allowed at CHP due to covid guidelines, though they Facetimed their sister and received pictures). Their meeting was beautiful, and they loved her fully from the beginning. It was clear that God had given her the perfect compassionate siblings to help her thrive in the future. They would later become a major part of her therapy success and overall development since they were up for modeling things for her and making it fun. It was a blessing for the family to have this transitional location before being HOME for Christmas.
Her parents worked diligently through the parent education program while reaching out to nursing agencies and interviewing nurses. Since this was still pandemic time, this task was particularly challenging. God provided the perfect day nurse and a variety of night nurses who would help the family when they got home. For the family, keeping nursing staff proved to be one of the most difficult parts of parenting a medically complex child (as there was constant turnover).
Her Favorite Things
Cancer
Chemo-Surgery-Cured
The genetic diagnosis given to Abby Joy had various levels of severity. She ‘checked every box’ in both the male and female presentations, except cancer…and we told her to try to avoid the oncology floor at the hospital. Just a few months after being home she was back in-patient with a variety of weird symptoms. It was during this February stay that she was diagnosed with a malignant Wilms tumor on her left kidney. As a ventilator dependent baby with a severe medical condition, her case would be very difficult and tumor boards from around the country spoke about her case. Her wonderful oncologist guided her through six months of chemotherapy.
At the midpoint check, the scan showed the tumor had not shrunk so she had surgery to remove a portion of her left kidney and adrenal gland. For any family, sitting in a waiting room on days like this can be excruciating. God gave peace that passed understanding again. The surgeon came out and reported that he was able to get the entire tumor. She finished her course of chemotherapy and rang the bell being declared cancer free the week of her first birthday! Soon thereafter, she had surgery to remove her Broviak (preferred port style for young kids) as well as repairing her cleft palate.
The moments leading to that miraculous day were filled with much uncertainty and challenge. Transporting a trach/vent baby to and from the hospital weekly, watching growth and development stop completely during that time, doing sterile procedures to change out Broviak dressings on an infected wound and flushing the line with saline and heparin became regular tasks. It is only through the strength of Jesus that the whole family survived that season. It was in celebration of this milestone that ‘Laps of Love’ began with her siblings to honor their sister and bring blessings to other kids battling the same disease.
Clinic Visits, Scans
& Procedures
Children’s Hospital of Pittsburgh at this point was a ‘second home’ to Abby Joy. She regularly met with specialists, had scans, went to the OR for airway scopes, and more. During this time Abby Joy worked to get off her ventilator fully during the day and eventually even at night (using a CPAP machine for humidification). As her airway strengthened the doctors regularly discussed the possibility of decannulation in the future.
The feeding team helped guide oral motor skills, along with swallow studies looking for aspiration, to continue the goal to eventually get nutrition orally rather than through the g-tube. Regular scans followed the kidneys to make sure the cancer didn’t return. This brave girl went to almost every clinic that exists at Pittsburgh Children’s Hospital. Between appointments we would name the colors of the wall in sign language, practice getting neck control or whatever PT strategy we were working on, watch the trains in the waiting room, or just wheel around in the stroller. a
The transition from emergency room visits to scheduled appointments was a much needed relief, and we had rewards at Starbucks on the way to the parking garage, including a special cup for the brave girl. With her joyful spirit it never mattered to her that her cup was actually empty, because she always had a full heart of gratitude. She constantly amazed her providers with physical, emotional and social development that was far beyond what any of them would have expected for her.
At age three Abby Joy began preschool with her homeschooled siblings. Along with academics with mom, she worked faithfully with her amazing home nurse to gain strength and mobility. She always had in-home therapy, but out-patient therapy with Capable Kids was also added. Everyone collaborated together to create the best plan of care and therapy goals for Abby Joy. Her work ethic was unlike anything those experienced therapists had ever seen. They were always impressed with her progress (with siblings by her side to encourage and challenge her also).
Therapy was truly a family affair. At home, Abby Joy learned her letters and numbers verbally and in ASL, worked on fine motor skills, learned Bible verses and much more to be a well-rounded preschooler. She particularly loved rewatching the worship portion of Sunday morning church on a phone so she could listen to music while she practiced her therapy goals. She truly loved her music and riding her balance bike around the house to keep up with her siblings wherever they were.
In her first year, Abby Joy had to live in a ‘bubble’ at home due to being immunosuppressed by chemotherapy and being ventilator dependent. When she finally got to come with the family to church it felt like the biggest milestone. Church became Abby Joy’s favorite place to visit. She would do the ASL sign for church even if the family was just driving past the building. She connected with the worship music in such a pure way and slowly got well enough and strong enough to sit near the front of the sanctuary in the sign language section. She progressed from being pushed in a stroller, to a balance bike to cruise the halls, to a purple walker that she walked independently from one side of the church to the other. Everyone knew and loved her there, and it was like she was a celebrity with how many people would tell her hello in awe of her progress each week. God was allowing the miracle of her life to be seen by many.
On a final appointment at the clinic one of
the experienced nurses on the floor shared
that, to her knowledge, Abby Joy was the first
baby in the hospital’s history who had beaten
cancer while being ventilator dependent.
Her wonderful oncologist even presented her case at a
conference that fall. She was truly a miracle once again!
Holidays in the Hospital
One of the by-products of severe illness is that children often are in the hospital on days that are special. Abby Joy spent her first Halloween, Thanksgiving, (visited clinics around Christmas) and Valentine’s Day in-patient. Any baby’s firsts are extra special to a parent, so the family had to find a way to celebrate in more unique ways. Receiving a duck costume, a turkey headband, a Valentine’s day craft or other small gestures of love meant the world. It was often the little things that got you through the day as a parent living at the hospital or the attached Ronald McDonald building. The foundation hopes to bless families in this way so others can experience joy even in difficult moments.
“Silent Night, holy night, all is calm, all is bright...Sleep in heavenly peace”
Adapted Adventures
A kid is a kid no matter what their physical or cognitive limitations are. This means they want to run around and explore their environment to learn. If a child can’t physically move around their space, this can severely limit their cognitive abilities early on. Her homeschool Mama included Abby Joy in as much as possible and made it her goal to develop her daughter’s cognitive ability while the physical skills were catching up. To this end, Abby Joy was taught ASL and used an AAC device. A group from Chatham University even made a switch-adapted jeep just for her that she took pride in driving around the yard (while a parent steered remotely). The home was filled with standers, walkers, therapy balls, oral stimulation tools, adaptive scissors, and anything else special Abby Joy would need to be successful. When Abby Joy was finally able to join siblings on fun field trips for homeschool, it was a developmental milestone that all celebrated. This included her amazing day nurse who was always up for doing the extra work with mom to make it possible for Abby Joy to join in the fun.
Final Day
Abby Joy had made it ‘out of the woods’ with most of her most severe medical challenges. She would have a lifetime of specialists, but she was truly thriving in every capacity. She was incredibly happy and finally able to enjoy family field trips to the zoo, the theatre, the park, etc. She was living life and loving it. That is why April 9, 2025 caught the whole family off guard. Abby Joy began running a fever that morning and then went into a blank stare and started into a seizure. (She had previous EEG’s and was cleared from neurology as not being a seizure risk child.) It was ‘all hands on deck’ as parents and her nurse all worked on her in her bed while calling 911 and getting siblings out of the house. She was life flighted to Pittsburgh with mom in the helicopter and dad driving behind. This would be her first and final helicopter ride, just like her favorite cartoon character Skye (from Paw Patrol) who flies a pink helicopter. Her mom had peace in the helicopter that Abby Joy was His child first and His will would be done. The seizure lasted for hours and eventually she went into septic shock.
Through the night her brain herniated, and she became brain dead early in the morning of April 10th. When her parents realized she wouldn’t be coming home, her siblings and other family came to say goodbye. Organ donation was discussed (to try to optimize her body in the best way for the next child). Due to multiple infections that were found along with sepsis, she wasn’t able to save another in that way, though she is considered an honorary donor by CORE. After running the full course of neuro tests and scans, her ventilator was unhooked for the final time and her heart became fully healed as her favorite worship songs “I Believe” and “Run to the Father” played in the room. There was weeping, but there was also peace that this sweet girl’s body was finally whole and she was running into the arms of her Heavenly Father.
Celebration of Life
As the family prepared for the celebration of life, her mom was reminded of a prayer she prayed back when Abby Joy had cancer. She had released Abby Joy to Him and asked that if God wanted to take her that He would do it quickly so she wouldn’t have to suffer and that it wouldn’t take place in their home. Both of these prayers were answered, and the last thing doctors said she would have remembered was laying in her bed with all of her loved ones in the same area of the house. God works in mysterious ways sometimes, and we don’t always know why He allows certain things. Her family chooses to trust God’s constant character and know that “in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28
Salvation
Why is there such confidence she is in heaven? It says in Romans 10:9 “If you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.” Abby Joy had learned to speak and sing near the end of her life and she was even learning Bible verses verbally and in ASL. She had the chorus of “I Believe” by Charity Gayle memorized. She had declared with her mouth that Jesus was Lord and through many circumstances she showed a heart seeking Him through worship in a way rarely seen by a child. She always belonged to her Heavenly Father, and her earthly father and mother know that the time God gave them to spend with her has forever changed them. It is out of her joy and how she influenced so many lives that this foundation idea was announced the week of her celebration of life. Through the generosity of many and guidance from God, nonprofit status was obtained, and ministering to others began in August 2025 on what would have been Abby Joy’s 4th birthday. Her life verse truly was Nehemiah 8:10 which says “Do not grieve, for the joy of the Lord is your strength.” It is the foundation’s hope and prayer that you will know Jesus because of the faithful life of Abby Joy.