The girl
behind the light
When it was time to begin preschool, Layla was ready and eager. Her light shone in school. She loved to learn, made friends easily and was always a great student. We also enrolled Layla in various activities at a young age.
She tried everything from dance and gymnastics to basketball and soccer. While she enjoyed everything she participated in, it was soccer that stood the test of time. Layla played on her first soccer team at the age of 4 and continued to play right up until college. She was a natural; a player with a high game IQ, a hard worker, a leader and very coachable kid. Layla loved being part of a team and her light always shined bright on that field.
When covid hit, Layla was in her last year of middle school (8th grade). It was then that we noticed a change. Learning online was an adjustment for many kids and Layla was one of them. Layla was very much like me, enjoyed being social, being active and busy. When covid took all that away, we saw the light in Layla dim a bit.
Layla's Light
Noticing changes...
It was in 2020, that we first noticed evidence of self harm (cutting). We immediately questioned “Why would you do that to yourself?”. We were upset, frustrated and most importantly concerned. Layla never really shared the reasons behind it, she was private and rarely shared any of her emotions with us, other than happiness. We got Layla into counseling and hoped that this was just a phase or bump in her road.
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When Layla was in high school and things started to return to “normal”, so did Layla. That infectious light and smile returned. She was playing soccer again and was back to her social self. The cutting had seemed to stop and her counseling sessions decreased, as they did not seem as necessary. Or so we thought…
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In October of 2022, we had received a very alarming phone call and a message from two of Layla’s friends’ parents. Apparently, Layla had made a threat to end her life on a social media platform. We questioned Layla and called her therapist. Layla did not deny the validity of these accusations and because of her history of self-harm, it was recommended that we immediately bring her to the hospital. My husband and I checked her into the ER at a local hospital. We spent an agonizing 24 hours in the psychiatric holding room. I will never forget that night. Seeing your daughter being stripped of all her belongings, not allowed to use the bathroom without supervision and being held in a room that had nothing but one small bed and four concrete walls.
We did not leave Layla’s side. We took turns laying in bed with her, trying to distract her from the outside noise. Layla was not a crier but she did cry that night.
Layla - H.S Grad
After the 24 hours and a psych consultation, it was decided that we would check Layla into an inpatient facility for struggling teenagers. Layla spent a couple weeks at this facility. We drove there everyday to visit her during the limited allotted time. During family meetings, Layla seemed a bit better, but therapists expressed their concern with her lack of sharing. Layla tended to share more when in groups with the other teens and was very limited with her sharing when it came to individual adult therapists.
After 2 weeks, we checked Layla out with a plan in place. Layla was put on Lexapro and would return to weekly therapy. We met with her school counselors and had a return to school plan as well.
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The next two years of Layla’s life appeared to be wonderful. Layla seemed happy and healthy and her light returned. We started to think about college and did many college tours. Layla also did several soccer ID clinics and was excited with the possibility of continuing her playing career in college. One of those visits and clinics was at St. Michael’s College near Burlington, VT. Layla loved it there! It was small, quaint, woodsy and 5 minutes outside the unique town of Burlington.
When Layla found out that she did not make the St. Michael’s soccer team, she appeared ok with it and decided that she would attend the school regardless. We visited the school several times before committing. It really did seem like the perfect place for Layla. She was excited and we were hopeful for her future. When Layla moved into school, she hit the ground running. I think she was ready for us to leave sooner than we hoped.
At the end of September, we (myself, my husband, my son and our dog) all went out to visit her for parent’s weekend. In typical Layla fashion, she appeared happy and well adjusted to college life. She talked about new friends, joining the rugby team and her social life. During the third week of October, Layla came home for a long weekend while her school had fall break. We went out for pizza at her favorite pizza place and shopped for Halloween costumes as she had planned to go to several Halloween parties! Once again, Layla seemed happy, adjusted and excited for her future plans. Layla returned to school and that following week, we got a bill from the University of Vermont medical center. The bill was for the treatment (stitching) of an incision. I immediately called Layla and questioned her about this incident. She withheld any information and claimed “it was nothing”. I was once again frustrated, confused and most importantly worried.
Little did I know, that would be one of the last conversations I would have with her. It still bothers me today to know that I was angry and frustrated with her and would give anything in the world to be able to have a redo.
On Monday, October 21, 2024, our lives changed forever.
We woke up to a missed call from UVM Medical Center. When we finally spoke to someone, we were told that Layla was at the ER due to an intentional overdose/suicide attempt. We were not informed of the details of her condition, but were told to drive up as soon as possible.
We quickly woke our son, grabbed a few things and made the drive from Connecticut to Vermont. I do not think any of us spoke on the 4 hour trip there. It was the longest drive of my life. When we were about 45 minutes away from the hospital, they called to check on our proximity. That’s when I knew this was very serious. I will never forget walking into that hospital room. Our daughter was hardly recognizable. She was hooked up to life support machines and barely awake. It was then we were informed that she had taken some of her friend’s prescribed ADHD medication along with a toxic amount of over the counter iron pills. Layla had brought those vitamins with her to college because she had suffered from anemia. We were told that Layla had made the call to 911 and was found in the woods of her college campus. We were also told that the iron had damaged the majority of her internal organs including her stomach, esophagus and most importantly her liver. The doctors told us that she may not make it but they were trying everything they could to save her.
My family drove up from CT knowing this may be the last time they would be able to see Layla. After 2 days, it was determined that the only means to survival was for Layla to get a liver transplant. She was airlifted to NYU and placed as a high priority on the transplant list. Waiting for that available liver was a very difficult time. We knew that as each day passed, Layla’s survival rate decreased.
On October 27, 2024, we got the news that they had found a donor and Layla would be receiving the transplant. The transplant surgery lasted several hours but went surprisingly well. We were told that although Layla had a long road ahead, the transplant went according to plan. It took several days for Layla to “wake up” after the surgery. While this was unusual and somewhat concerning, we all thought it was because her body had been through so much. When Layla finally woke up and was taken off the respirator, we immediately learned that she had very limited movement on the right side of her body. While this was concerning, we were told that it happens when patients are critically ill or in the hospital for an extended period of time.
During the next week or so, Layla was still very sick and in the medical ICU. She suffered from kidney failure and was on continuous dialysis for quite some time. She ran high fevers, vomited regularly and her blood pressure was not stable. Layla was able to communicate with us but claimed that she did not remember the incidents leading up to her transplant. At that time, we were not sure if this was true or if this was a coping strategy so Layla would not need to share her feelings.
We probably could write a book just detailing our 134 day stay at NYU. During this time, our normal lives stopped and we did everything in our power so that at least one of us would be by Layla’s side 100% of the time. My husband and I worked out a 24 hour rotating schedule so that we could travel back and forth from CT to NYC. This meant taking a 2 ½ hour train ride everyday and just seeing each other as we passed by at Grand Central, for months at a time. This also meant keeping a detailed shared note file on our phones to update each other on every doctor that stopped in, as well as all lab and scan results. We didn’t care though.
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We did everything we could to be there for Layla while trying to keep my son’s life as normal as possible. As exhausting as those days were, I would do it all again in a heartbeat.
During her stay, Layla had a routine MRI and that is when we learned that Layla had several mini strokes. They could have happened during surgery but were very small and almost unnoticeable. We were concerned, still unsure of her complete prognosis, but we remained hopeful. Layla had blood drawn daily to check on her liver and kidney functions. The doctors also took cultures to determine the cause of the high fevers and vomiting. It was from these blood draws and cultures that we learned Layla had a fungal infection called aspergillus. The doctors are unsure of how Layla contracted the fungus (possibly from being in the woods) but they informed us that it spreads through the blood vessels and is serious to those with weakened immune systems. Layla was then put on several antibiotics and antifungal medications.
One main problem was she was also on anti-rejection medications due to her liver transplant. It was a tricky balance in deciding the dosage of each type of medication that would fight the infection while keeping Layla’s liver numbers stable. Luckily, we had the best teams of doctors working together to figure it out. During the first few weeks of November, we learned just how dangerous the aspergillus was. The infection traveled to her brain and caused several brain aneurysms. The doctors were quick to find these aneurysms and treat them. It was very scary but she kept fighting and survived all these procedures.
On November 18, Layla suffered from a brain bleed. The bleed was so severe that the only way to stop the swelling and save Layla’s life was to have a craniectomy. The neuro surgeons had to remove one-third of Layla’s skull. We were told that the part of her brain that was affected controlled her ability to produce and understand language, as well as control the right side of her body. A drain was put into her head to relieve pressure and fluid build up. It was one of the hardest nights of our lives. Layla was back on the respirator and unable to communicate. We had no idea how this procedure would affect the rest of her life.
Layla had a difficult time coming off the respirator and eventually it was decided that Layla should get a tracheostomy. Although there were still many complications over the next few weeks, Layla had shown some signs of progress. There was talk of getting her into an acute rehab facility and she was moved back down to the transplant floor.
Layla - College
Layla never made it to rehab.
Over the next few months, we watched the aspergillus take over our daughter’s body. We found the source was in her heart and the fungus was growing behind her eyes and towards her line of vision. This fungus caused blood clots in her lungs, her stomach and kidneys. Because of Layla’s brain bleed, blood thinners were not an option and there was nothing left to do. Layla had countless life saving procedures and surgeries, but it was ultimately blood clots in her legs that took her life.
Layla passed away on March 7, at 3:28 am.
My husband and I were with her, holding her hands until her last breath. Layla officially died from sepsis, but it was depression and anxiety that truly took her life. No one should ever have those feelings so deep inside them and feel the way she did. No one should ever feel that they can not share those feelings if they do. No one should have to had felt the pain that Layla did (physically and mentally). No parent should have to worry and feel hopeless when their child is struggling with mental illness. No parent should have to watch their child suffer in a hospital every day for five months. No one should ever feel the heartache that we feel every day without Layla here.
Remaining strong and getting through the funeral services of your 19 year old daughter is unimaginable. We were so very lucky to have the support of our family, friends and community to help us. The outpouring of love was incredible and we are forever grateful for that. When reading our messages and condolences, several words about Layla consistently stood out:
Those words were “smile”, “kind” , “sunshine”, and “light”.
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NYU Terrace - Outside
Our lives will never be the same and I hope that by sharing her story we can remember those words and keep her light alive.