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Young family faces daughter’s diagnosis with faith: ‘In God, there’s hope’

by | Jul 31, 2023

By Lisa Bast 

Kali Jackson always knew she’d attend college. Her goal was to study nursing and eventually embark on a career as a pediatrician. Since the sixth grade, Jackson had been enrolled in The Young Scholars Program with the promise of a full scholarship to Ohio State University. She never saw herself in the role of a mother, but at the age of 16, Jackson became pregnant.

Jackson told Live Action News, “At first, I didn’t think much would change because of my pregnancy. I could enroll in Kent State University and be closer to home.”

As a pro-life Christian, Jackson never considered abortion.

“I made the choice to have unprotected relations with my boyfriend, Caleb, so I needed to take responsibility for the consequences,” Jackson said. “Fortunately, both sets of parents were supportive as was Caleb during this time.”

For the first seven months, the pregnancy progressed normally, but then an ultrasound showed the baby was abnormally small. Doctors told Jackson the umbilical cord was not providing adequate blood flow to the baby.

Jackson said, “I was advised to have an amniocentesis so doctors could gather more information, but I declined. I didn’t want to do anything that might harm the baby.”

Two weeks later, Jackson was admitted to the hospital suffering from pre-eclampsia. She was given injections to help mature the baby’s lungs and was told she’d most likely have to undergo a cesarian section. A fetal heart ultrasound revealed a tiny hole in the baby’s heart that doctors told Jackson would close once her daughter was born.

“I was so confused,” Jackson said. “How could this happen so suddenly? I was very scared and feeling overwhelmed.”

Her surgery date was scheduled for December 9, but in late November, while still in the hospital, the baby’s heart rate started to dip. Jackson was told she’d have the surgery in 30 minutes to save her baby’s life.

Jackson said, “The epidural didn’t work, so I was put under anesthesia. I’m so glad Caleb was able to be with me. Our baby, Kelsi was born on November 27 and weighed just one pound, six ounces. She was so tiny they had to put her in what looked like a plastic bag to keep her body temperature regulated and inserted a breathing tube. I was terrified but so happy she made it through the birth.”

Couple fights for severely disabled baby’s life

But the story wasn’t yet over. Doctors told Jackson her daughter did not have a promising outcome.

“They told us she may never walk, talk or breathe on her own,” Jackson said. “Her liver, eyesight, and hearing were affected by what we were now told was the CMV virus, which I apparently contracted early in my pregnancy. This was devastating news.”

When Kelsi was two months old, she was switched to the nose cannula, but the breathing tube was re-inserted when she turned blue as she struggled to breathe. Doctors advised a tracheotomy to improve her breathing but cautioned Jackson her child’s life expectancy was low.

Jackson said, “The doctors told us that if all this was just too much to handle, we should just let her go. I couldn’t believe those words were said in her hospital room. Caleb and I prayed together after eight minutes of silence and told the doctors we were committed to doing everything to save our daughter.”

The couple believed that because of their young age, their capability to care for the daughter was being callously disregarded.

“I appreciate getting the worst-case scenario, and we understood there would be a lot of sacrifice, but we refused to believe there was no hope for her,” Jackson said. “We weren’t going to accept that diagnosis.”

When Kelsi was one year old, she started showing improvement and Kali enrolled in Kent State, commuting to school while working part-time. Kelsi was still on a ventilator and oxygen, but doctors believed she was ready to go home.

Jackson said, “Caleb and I had to be trained on how to change and clean the trach tube and undergo 12-hour stays so we were proficient in her care. Later we were told she couldn’t come home because of lack of available nursing care. We were so frustrated at this point.”

Overcoming adversity with faith

But in July 2020, Kelsi, now 20 months, was weaned off the ventilator, and though still on oxygen, was finally ready to come home.

“It was like bringing home a newborn, we all had to adjust to a new way of life,” Jackson said. “By now, I was working in daycare full-time, so Caleb quit his job to care for Kelsi. We didn’t want to infringe on our parents because we knew how hard it was to care for a child with so many disabilities.”

They struggled with getting in-home nursing care, as nurses didn’t want to travel to their neighborhood. Eventually, the couple moved in with Caleb’s family for short-term assistance.

Fortunately, the nursing agency ultimately found a qualified nurse to help during the day and Kelsi, still severely behind in development, started to progress steadily.

Jackson said, “Kelsi’s eyesight has improved though she wears glasses but now she only needs a hearing aid in the left ear. Her trach tube was removed on July 7.”

Kelsi, now four years old, doesn’t yet talk but does use a speech device, though she is starting to emit natural sounds on her own.

“Every day we hear new sounds,” Jackson said. “I think her vocal cords are just weak. We had her tested; there’s no medical reason she can’t speak, but I do think her voice is strengthening.”

Jackson is grateful for the miracle of Kelsi. She credits her strong faith and Christian support network for walking alongside her in difficult times. Currently serving as a director of a daycare center, Jackson loves her job. While it’s not what she envisioned, she knows her life is in God’s hands.

Jackson said, “In God, there’s hope. In those moments when you don’t know what to do, pray. I always believed Kelsi’s life mattered even if she wasn’t a typical baby. Going through this journey has taught me patience and strengthened my relationship with Christ. Don’t ever give up; let God lead you through it.”

Editor’s note. This appeared at Live Action News and reposted with permission.