Caroline is a happy and curious girl from Peachtree City, GA, who continues to climb hills big and small every day with determination, even when the roads are difficult. Our August 2023 “The hard roads are the ones worth choosing” design is inspired by Caroline and her family’s story.
In October 2020, Caitlin and Jeff Lakdawala eagerly awaited the birth of their third child, Caroline. Everything went smoothly until the 36-week mark when Caitlin could no longer feel Caroline moving. Concerned but hopeful, the couple took their two eldest kids and the dog to the hospital.
During the ultrasound, Caitlin’s intuition quickly told her that something was amiss – and she was right. The umbilical cord was wrapped around Caroline’s neck twice, and although the technician detected a heartbeat, they couldn’t detect anything else. While Jeff rushed to drop off the kids and the dog with some friends, Caitlin completed the ultrasound and returned to her room.
A nurse had been waiting and informed Caitlin that she needed to prepare for a c-section. The words “I don’t know if your baby will survive. If we induce you, she will not survive,” echoed in Caitlin’s ears as the room was being prepped.
“At this point, I was still alone. Given the circumstances, my husband was given permission to park anywhere and run to the OR so that they could begin the c-section as soon as possible,” Caitlin shares.
When Caroline arrived, she wasn’t crying, and the doctors promptly attended to her. They whisked her away to the warmer, ensured her breathing was stable, and set her up on oxygen before transferring her to the Neonatal Intensive Care Unit (NICU). Looking back on that time, Caitlin shares her experience:
“I was awake during the c-section, but they didn’t let me go to the NICU until I could get into a wheelchair by myself. Two hours went by, and I still couldn’t feel my legs, but nothing was going to stop me from seeing her.”
The following morning, Caitlin sat down with her newborn to bottle-feed her. It was during this moment that she discovered Caroline’s inability to suck, swallow, or have a gag reflex. The milk she ingested went straight to her lungs, causing Caroline’s color to change to black and blue, and she had to be swiftly resuscitated as her oxygen and heart rate dropped.
After stabilizing Caroline, the medical team began feeding her through an NG tube. However, she soon started experiencing seizure-like activity. That night, doctors set up a twenty-four-hour EEG to monitor her brain activity, which revealed abnormal patterns in the background but no actual seizure. Following this, Caroline underwent an MRI.
As the couple anxiously awaited the results, Caitlin continued to have fears that something might not be right.
“We had noticed she wasn’t calming down, had a lot of movements, and wasn’t reacting like our other kids. I was discharged from the hospital on Thursday. The Covid policy at the time stated that once I was discharged, only one of us could be at the hospital every 24 hours.”
During this time, the couple arranged for Caroline to be transferred to the local Children’s Hospital in Atlanta. Amid the whirlwind of hospital transfers, the MRI results arrived. Jeff was present at the hospital while Caitlin listened via speaker as the doctor read the results aloud.
The MRI revealed that Caroline had damage to two parts of her brain: the thalamus and cortical spinal tracts. The long-term implications of this condition remained uncertain, and doctors couldn’t predict what it would mean for her. She was diagnosed with a type of brain damage called Hypoxic-ischemic encephalopathy (HIE).
More testing was conducted at the Children’s Hospital, with Caroline being just six days old at that point.
“During one of the visits, the doctor asked me to look at Caroline and tell him what I thought. I felt like the worst mom for saying this, but I told him that it seems like the lights are on but nobody was home,” Caitlin shares.
The doctor, acknowledging Caitlin’s concerns, confirmed that Caroline wasn’t responding to painful stimuli or light. They cautioned she might never see, hear, or move below the neck, and recommended intensive therapy while she was in the NICU.
Adjusting to their new reality, the couple started incorporating intensive therapy into Caroline’s routine. She began attending occupational therapy three days a week, physical therapy twice a week, and speech therapy five days a week in the hospital.
Caitlin vividly remembers their first occupational therapy sessions, where they performed simple exercises. For instance, they would gently run a finger from the back of Caroline’s wrist to the back of her shoulder, hoping to see any signs of movement, like her bending her arm up. They patiently persevered with these exercises until one remarkable day when Caroline actually responded.
When Caroline was approximately ten days old, the couple met with their care team to explore potential homecare options, particularly due to concerns about her nutrition. After careful consideration, it was decided that a g-tube would be the most beneficial solution for Caroline.
Although the g-tube helped address the nutrition issues, Caroline began experiencing apnea problems. A sleep study revealed that she had over a hundred episodes of disrupted breathing, which was incredibly worrisome. Consequently, an immediate action plan was devised, including placing Caroline on high-flow oxygen, switching her feeds to continuous (twenty hours a day), and administering caffeine to her daily.
Remarkably, the very next day, the apnea monitor indicated that Caroline had zero episodes, bringing immense relief to the room and instilling hope that she might eventually overcome some of these challenges.
The next plan was to get her home.
Caroline spent a total of thirty-three days in the NICU, but the day came where she could return home and finally get to meet her siblings, Charlotte (8) and Liam (9).
“We were very open and honest with the big kids because we didn’t want them to be afraid when she came home with all these tubes, wires, and machines. We worked with a Child Life Specialist who gave us teddy bears fitted with g-tubes, oxygen cannulas, and pulse ox sensors to bring home to help the kids get accustomed to Caroline’s assistance,” Caitlin shares, “The day we brought Caroline home, it was a surprise for the big kids. They were so excited to meet her and not afraid of her. In fact, they even fought over who would get to hold her. Our oldest daughter, Charlotte, was super interested in all of Caroline’s medical supplies. Two months later, big sis would be by our side helping with all of Caroline’s care.”
Coming up on the year of Caroline’s first birthday, Caroline was diagnosed with cerebral palsy and dystonia in her arms. Caroline had also developed bilateral hip dysplasia and continues to get x-rays done to monitor the hip joint.
Today, Caroline is nearly three years old. She is known for her delightful and happy demeanor, thoroughly enjoying outdoor activities, reading books, rolling around, and watching her siblings play. Her favorite shows include “Bluey,” “Elmo,” and various PBS programs.
Caroline’s weekly routine includes attending PT, OT, Speech and Feeding therapy twice a week, totaling six hours. Additionally, her private special needs school provides her with a variety of therapeutic support. She is a diligent and determined child, as evidenced by her continued progression towards eating by mouth and her most recent achievements of pushing up through her arms and starting to army crawl. Currently, her primary goal is to achieve independent sitting, and she is diligently working towards it.
Caroline began attending outpatient intensive therapy programs at the age of fifteen months. These programs, which last for three weeks and include three hours of therapy, five days a week, have proven to be highly beneficial for her and the family. It’s worth noting that these intensive therapy sessions are a significant investment in time and are not covered by insurance. Often the family has to travel out of state to attend and spend weeks apart. Despite this, they are eagerly anticipating their upcoming three-week session of intensive therapy in August, which will take place in Tennessee. There are mountains ahead but they’re determined to climb them together.
Reflecting on their journey, Caitlin shares,
“We were told several times by medical professionals to give up and stop wasting our time and money. After not making any noise for the first twenty-eight days of life, every squeal, giggle and noise fills our hearts with joy and make us proud to be her parents. We didn’t give up on her then, and we won’t give up on her now.”
Time to get loud shouters!
Throughout the month of July we will be shouting loud for Caroline!
So click here to shop now where every purchase in August will go toward the cost of intensive therapy for Caroline that is not covered by insurance.
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