Name: Caitlin and Jeff Lakdawala
Location: Georgia, United States
Child’s Birth Year: 2020
Keywords: HIE Dad, Navigating Sibling Relationships, New to HIE, Supporting Your Partner
Caitlin and Jeff live in Georgia with their three children, Liam, Charlotte, and Caroline. When Caitlin found out she was pregnant at the start of the pandemic, the entire family was overwhelmed with joy. Liam and Charlotte were so excited that they would have a baby sister to play with, and Caitlin and Jeff looked forward to reliving the experience of parenting a newborn. Caitlin had previously been a NICU nurse, so she had witnessed the potential complications that could occur during the labor and delivery process. To be on the safe side, she decided she would give birth at a hospital with a level four NICU, even if it meant driving the hour to Atlanta. Even so, she never fathomed anything would actually go wrong.
Then, when Caitlin was thirty-six weeks pregnant, she couldn’t feel Caroline moving. The entire family made the trip to the hospital so that Caitlin could be checked out. At the hospital, Caroline’s heartbeat was strong, but she still wasn’t moving. When Caitlin went downstairs for an ultrasound, a sonogram technician realized that Caroline wasn’t breathing because the cord was wrapped around her neck twice. After the technician told Caitlin she needed to get back upstairs immediately, the panic started to sink in.
Before she knew it, she was taken to a private room to be prepped for a potential emergency C-section. As the nurse finished explaining they needed to wait for a doctor to know for sure whether the baby was coming today, a resident ran into the room, consent forms in hand. Caitlin’s worst fears were confirmed. The resident told her Caroline would certainly not survive a natural birth. There was also a chance that Caroline wouldn’t survive an emergency C-section, but it was her best shot. Because they didn’t want Caitlin to have to wake up after surgery to find out if her baby made it or not, the doctors kept her awake during the procedure.
Once Caroline came out, she never cried, and she was limp and blue. It was clear she had been in distress, as her fluid was stained heavily with meconium. Fortunately, she didn’t require CPR—after receiving a little oxygen, she perked right up. The doctors weren’t overly alarmed, but Caroline was still taken to the NICU because she required extra oxygen. Caitlin and Jeff assumed it was because Caroline was four weeks early and that, after this little nudge of support, she would go home healthy.
The following day, however, after Caroline tried to drink from a bottle, her stats plummeted. A team of doctors quickly rushed in to stabilize Caroline, and, from that point forward, it became evident to Caitlin and Jeff that this was much more serious than they initially thought. Caroline also started having movements, such as bicycling, which doctors thought were indicative of seizure activity. Although the EEG didn’t indicate seizures, it did show abnormal activity and brain waves in the background.
An MRI was done and results indicated Caroline had endured an HIE event due to the hypercoiled umbilical cord that had wrapped around her neck twice and which had a true knot in it. The hypoxic event led to damage in Caroline’s thalamus and corticospinal tract. Finding out this news was overwhelming enough. But, to make matters worse, the strict visitor policies due to COVID-19 meant that only one parent could be in the NICU at a time. Since Caitlin had been discharged from the hospital by that point, she had to hear this devastating information over the phone, while Jeff was in the conference room with the neonatologist.
Due to sheer luck of a bed opening up, Caroline was soon able to be transferred to a nearby children’s hospital, where Jeff and Caitlin could both be at the bedside. To be there together was a godsend, for they needed each other for support during such a difficult time. Moreover, the difference in atmospheres between the two hospitals was like night and day. The new hospital, with its colorful walls and warm, welcoming staff, felt as close to home as a place with sick children could get.
Two days after she was transferred, Jeff and Caitlin met with a neonatologist. The neonatologist told them Caroline would likely never be able to move anything from the neck down. It was still unclear whether she was able to see or hear anything. As horrible as this was to hear, Jeff and Caitlin appreciated that the neonatologist managed to infuse hope into the conversation, despite a seemingly grim prognosis. Instead of ending the meeting on a negative note, when Jeff and Caitlin felt at their lowest, the neonatologist said this: “Your best hope is to start Caroline in intensive therapy as soon as possible.” Even though the neonatologist may not have recognized how great of an impact his word choice had, Caitlin held onto the phrase “your best hope” for a long time afterward. It opened the door to possibility, to the concept that, perhaps, one day, Caroline would be able to respond to more stimuli. And, in all those days of feeling powerless as parents, Caitlin and Jeff now had a tangible way they could help Caroline reach her full potential—by ensuring that Caroline had all the therapists she needed on her team.
The very next day, Caroline started intensive therapy. Eventually, they landed upon a hospital routine where Caroline received physical therapy two to three days a week, occupational therapy three to four days a week, and speech therapy five days a week. Caroline’s therapists quickly became the biggest support system for Caitlin and Jeff in the hospital, especially since they were the people seeing Caroline most consistently. Caitlin and Jeff genuinely don’t think Caroline would have progressed to the point she has had it not been for starting therapy so early on. They feel extremely fortunate that the hospital was so encouraging about beginning right away, for they know this is not the experience for many HIE families. Even if a hospital doesn’t bring up early intervention as an option, Caitlin and Jeff would tell parents to actively look for different avenues to bring therapists on board.
In addition to the therapists, the NICU nurses were wonderful at making the hospital feel a little more like home. They were quick to hang up the pictures that Liam and Charlotte made for Caroline around her private room, and they made sure the entire family felt included, even when not everyone was physically there. It was hard for Liam and Charlotte not to see their baby sister for the thirty-three days she was in the NICU, and Caitlin and Jeff stressed about how the two older kids would transition to them suddenly coming home with Caroline and all her equipment. To help them prepare, a child life specialist talked them through how to explain everything that was going on to Liam and Charlotte. The child life specialist even gave them books and made specialized toys, so that Caitlin and Jeff could show the kids the reality of Caroline’s extra needs in a digestible, unintimidating manner. For instance, she made teddy bears that had the same equipment as Caroline, such as a G-tube. Caitlin and Jeff were able to bring the teddy bears home ahead of Caroline’s discharge, so that Liam and Charlotte could visualize what the G-tube would look like, as well as practice taking it in and out.
Because Caitlin and Jeff engaged the kids in Caroline’s care and were so honest with them whenever they asked questions, Liam and Charlotte were very prepared when their baby sister came home. Charlotte was so excited to act as a “mini mom” to Caroline, wanting to help out as much as possible. Even though there were times where Caitlin held her breath out of fear, she always let Charlotte assist in changing Caroline’s G-tube. Now, Charlotte refers to Caroline’s equipment as her “accessories”—different, but not scary. Caitlin and Jeff would reiterate, if you treat your HIE child as someone fragile and not to be interacted with, older siblings will sense that fear. But if you’re open with them, and include them in the HIE experience, they will see that maybe it isn’t so scary after all.
As brilliant as the hospital staff was, one unfortunate consequence of being in the hospital during the pandemic was that the NICU support groups that usually met were no longer running. Caitlin and Jeff didn’t get to connect with many parents around them, so they felt alone in all of this. Fortunately, a few weeks into their stay, a NICU nurse directed them to Hope for HIE and another family she knew whose son had HIE. Early on, the doctors told Caitlin and Jeff about the resilience of babies and how their brains are incredibly adaptable. At the time, Jeff was so scared to believe them, wanting to protect his heart from potential disappointment. But, after being directed to Hope for HIE, it felt safer for Jeff to have faith in neuroplasticity. There are so many children in the HIE community who are doing things no one ever thought they would be able to do, based on their MRI results.
For a long time, Caitlin felt like she had failed to protect the tiny human that had been growing inside of her. And while she was grateful the people in her life—Jeff, her friends, family members, her therapist, and the staff at the hospital—were willing to listen to her, none of them had lived through the trauma of feeling like their body had betrayed them. Jeff was always very supportive, holding that space for Caitlin to vent, and acknowledging that it might take time for her to work through all those complicated layers of guilt. Yet, to him, the situation was cut and dried—Caitlin indisputably could not have done anything differently. In fact, it was because of all the extra precautions Caitlin took that the situation wasn’t as dire as it could have been. So, for Caitlin, it was also comforting to see there were other moms in Hope for HIE who resonated with the immense guilt she felt in the aftermath of Caroline’s birth.
Now, Caroline’s therapy schedule continues to remain intense, with PT, OT, feeding therapy, and aquatic therapy every week. But, as important as it is for Caitlin and Jeff to make sure Caroline has the best future possible, it’s also equally important for them to enjoy the day-to-day moments with her. At the end of the day, Caroline is a baby, and she’s only going to be a baby for a short time. This whole journey has highlighted what is most important in life—spending time together and living in the present moment with family. Caitlin and Jeff find the wonder and joy in each of Caroline’s smiles. It’s truly amazing to see that, despite all Caroline has been through, and continues to go through, she is the happiest, sweetest, most easygoing baby.
Though they are still new in their journey, Caroline has truly been the biggest light in their lives, enlightening their hearts to what unconditional love looks like and their minds to so many different lessons. For both Caitlin and Jeff, bringing Caroline into this world has strengthened their faith, family, and their voices as advocates. They aren’t afraid to speak up to insurance companies or to seek second opinions. Caroline has proven to them that, with hope and support from the community, anything really is possible.
Eight months after Caitlin and Jeff were told that Caroline might never move anything from the neck down, she was already rolling from her belly to her back. She’s the youngest patient at the aquatic therapy clinic, learning how to move around in water. Caroline has shown them that differences are not inherently bad or something to be feared. As parents, Caitlin and Jeff are proud to see how accepting Liam and Charlotte have become of people with disabilities. In the future, they hope to instill this same sense of acceptance in other families and children outside of the HIE community. Most of all, Caitlin and Jeff hope to serve as a source of support for families thrown into this overwhelming, complicated world of HIE. By telling the hospital about Hope for HIE’s printable resources, and by giving NICU nurses their contact information to pass along to new HIE families, Caitlin and Jeff aim to show parents that there is at least one constant amidst so much uncertainty—the global village of people on this path alongside them.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
